– Hide quoted text — Show quoted text ->>> much (but can still spot the difference between a maybe-idea and >>> forget-it idea). >< Snip, oh, nothing.  There was no response> >> "…forget-it ideal." > What ideal?  He said idea.  I realize that Zee the Journalist refuses > to learn the difference between obviate and vitiate, even after they > are pointed out to her, but idea and ideal are short words. >> But you missed it here boyo. I took my posts out because I’m ashamed >> alright; ashamed for having spent any time talking to you. >Excessively careful for an anonymous twat. > What gets me is that she can insult Steve in very childish and > content-free ways like this, and like implying that his opinions are of > no value because of his sex, race and physical appearance, then turn > around a few hours later and tell him she respects him and his opinions > and knowledge when she wants some medical information about her own > health.  Then a few hours later, she’ll insult him again for helping > her out, if she doesn’t like what she reads, or thinks she reads. > She does this to other knowledgable posters in this group, including > the other medical doctors who generally don’t have a political axe to > grind like Steve does. I find this rather bizarre. > Btw, moo, do you think she’s really Canadian?  I mean, Canadians are > noted for their civility, y’know.  Maybe she’s part of a giant CIA > plot to convince Americans that we are scum, so it’s okay to invade > us and steal all our petroleum?

I must admit, and take blame in falling victim for some of what she says and the way she portrays Canadians. I agree that there is a mental component to her personality that others have  mentioned like the narcissistic aspects of only talking to "scientists and doctors" who relay their concerns to her. She also threatened me by stating she would contact my professional organization and exposing where I work if I did not shut-up. One sick puppy and now she’s deleting her posts.

Response:

- Hide quoted text — Show quoted text ->> But you missed it here boyo. I took my posts out because I’m ashamed >> alright; ashamed for having spent any time talking to you. >Excessively careful for an anonymous twat. > What gets me is that she can insult Steve in very childish and > content-free ways like this, and like implying that his opinions are of > no value because of his sex, race and physical appearance, then turn > around a few hours later and tell him she respects him and his opinions > and knowledge when she wants some medical information about her own > health.  Then a few hours later, she’ll insult him again for helping > her out, if she doesn’t like what she reads, or thinks she reads. > She does this to other knowledgable posters in this group, including > the other medical doctors who generally don’t have a political axe to > grind like Steve does. I find this rather bizarre.

That and, has the gift of shamelessly asking for help from them directly. That ability is common among those who think that their oppression grants them the right to use others, especially ones they deem to be unfairly in possession of anything they want, as they see fit. > Btw, moo, do you think she’s really Canadian?  I mean, Canadians are > noted for their civility, y’know.  Maybe she’s part of a giant CIA > plot to convince Americans that we are scum, so it’s okay to invade > us and steal all our petroleum?

She is an Officially Certified whiner first and a Canadian second.  What’s yours should be hers, via your government. moo

Response:

> She also threatened me by stating she would contact my professional > organization and exposing where I work if I did not shut-up.

Did she do that here or via email?  I suspect that she did a similar thing to me.  Can’t prove it since she’s anonymous.  And, even then it would be hard.  But I could make the situation uncomfortable for somebody if I knew their name.  When losing an argument badly, as she does so often with zeal, she claimed her trump card was access to inside information not legally available to the public that proved her idiotic point.  Then she posted information about me that I suspect she illegally obtained from a government source to verify her superior knowledge.  I don’t believe she was threatening me.  Just being an asshole. > One sick puppy and now she’s deleting her posts.

Narcissism is incurable.  She’s a menace.  I don’t know why the MDs here take the risk of talking to her. moo

Response:

– Hide quoted text — Show quoted text ->>> much (but can still spot the difference between a maybe-idea and >>> forget-it idea). >< Snip, oh, nothing.  There was no response> >> "…forget-it ideal." >What ideal?  He said idea.  I realize that Zee the Journalist refuses >to learn the difference between obviate and vitiate, even after they >are pointed out to her, but idea and ideal are short words. >> But you missed it here boyo. I took my posts out because I’m ashamed >> alright; ashamed for having spent any time talking to you. >Excessively careful for an anonymous twat. >What gets me is that she can insult Steve in very childish and >content-free ways like this, and like implying that his opinions are of >no value because of his sex, race and physical appearance, then turn >around a few hours later and tell him she respects him and his opinions >and knowledge when she wants some medical information about her own >health.  Then a few hours later, she’ll insult him again for helping >her out, if she doesn’t like what she reads, or thinks she reads. >She does this to other knowledgable posters in this group, including >the other medical doctors who generally don’t have a political axe to >grind like Steve does. I find this rather bizarre. >Btw, moo, do you think she’s really Canadian?  I mean, Canadians are >noted for their civility, y’know.  Maybe she’s part of a giant CIA >plot to convince Americans that we are scum, so it’s okay to invade >us and steal all our petroleum?

You mean it’s not?  Hmm.  I must have misunderstood all these new political ideas.  I thought anything the US wanted to do was OK. How disillusioning.   — David Wright :: alphabeta at prodigy.net      These are my opinions only, but they’re almost always correct.      "If you can’t say something nice, then sit next to me."                                  – Alice Roosevelt Longworth

Response:

- Hide quoted text — Show quoted text -> >> COMMENT: > >> They’re not all disadvantaged. Beta-thal major (the big one with the > >> transfusion iron overload) affects Africans, Mediterranians, and South > >> East Asians. It’s one of these genes selected for by malarial areas, > >> you know, like sickle. > >Yes. Malarial areas; like parts of Africa. > Cripes.  Thalassemia research and treatment are important in Toronto > because Toronto (and Ontario) has a large population of Italian, Greek > and Portuguese origin.  At one point there were more people living in > Toronto who were born in Italy than there were in Milan. > These people came to Canada after WWII and mostly worked in the construction > trades.  Their children and grandchildren are far from disadvantaged — > they are ordinary middle class and professional people, like Dr. Olivieri. > COMMENT: > Exactly so. Duh. Dr. Olivieri is an Italian-Canadian working on a > common disease of Italian-Canadians.  It’s middle-class Italians who > need iron overload treatment, because poor Africans who have > beta-thal-major don’t get enough transfusions to worry about the > problem in the first place. Instead, they simply die. Those that do get > a few transfusions, get HIV with them, so they don’t have to worry much > about long term effects like iron, either. > >> As for Olivieri putting loyalty to patients first, did she do them any > >> good thereby?  She’s probabaly single handedly responsible for keeping > >> deferiprone off the market in Canada and the US. Okay. But most of the > >> people who need it are in Europe and Africa. Where it has been > >> approved, and is in use. The "disadvantaged" in Canada can’t have it. > >This is my opinion: The drug is harmful. Like statins. Like Vioxx. And > >pharma has found ways and means to slip through. It’s wrong. They’ve > >gone where poverty and hunber move people to do things that may hurt > >them. No doubt some similar drug is needed. Some "better" similar drug. > >Olivieri can’t stop them from what they’ve done now, although I think > >she tried. > COMMENT: > Ah, the martyrdom of the lady doctor, risking her career at the > university (yeah right– like they’re going to fire a female physician > professor), for the sake of the disadvantaged of the world! Such opera! > And I see Zee has graced us with her medical opinion on this issue of > liver problems, which divides the European drug safety reviewers from > the reviewers in North America. She should write them a letter, like > she proposed I do: "(signed) Zee, from Usenet…" > Alas, as for "poverty and hunger" Zee talks about, I think you and I > have both touched on that, albeit not in a way that has penetrated > Zee’s noggin. If you’re getting regular transfusions for your > thal-major so that you need an iron chelator, you’re not IN the > "poverty-and-hunger" class! So QED that’s simply NOT the people the > (almost)martyred Dr. Olivieri was developing deferiprone FOR. Okay? Oh, > how shabby our fairytales look, when exposed to the light of reality. > I also see Zee has erased most of her messages in this thread, probably > out of embarrassment. And rightly so. I’d be embarrassed to have writen > them, too. For the reasons that you amply set out below, and which are > worth everybody reading one more time. > Well, is this drug better or worse than other treatments?  Is it better > than doing nothing?  How would you find out?  How would you find out if > a "better similar drug" is better or worse, if it’s not ethical to test it? > It isn’t ethical to enroll people in drug trials because the drugs > might harm them.  It isn’t ethical to put them in the placebo group, > because the drugs might benefit them.  Is it ethical to tell people > they’ll just have to suffer and die because it isn’t ethical to > research and test new treatments? > And sorry, poverty and hunger aren’t driving Canadians to take their > children to the Hospital for Sick Children to get the best care they > can find for beta thalassemia.  It’s a disease.  It causes harm.  The > current treatments aren’t ideal.  New treatments may be better.  You > don’t want new treatments to be tested, on poor people or non-poor > people.  You don’t want them to be used without testing.  So how do you > propose we determine whether the new treatment is better than the > current ones?  Is it better to just stick to current treatments, which > also cause harm?  Or not treat at all, and let all the harm be natural? > Statins have been tested, and as Steve says, they can cut stroke risk > by 30% for some people at risk.  If I had a high risk of stroke, a 30% > lowered risk would sound good to me, and I’d try them to see if i could > tolerate the side effects.  If the side effects were hard to bear, I’d > have to weigh that against the benefit, the reduced stroke risk.  I’d > have to do that in absence of perfect knowledge, because nobody has > done a double-blind controlled study on 100,000 clones of me.  Even > that wouldn’t give me perfect knowledge, because I’d have no way of > determining which clones I’d most resemble in response to the drug. > I’m in my mid-fifties, and I know I’m not as sharp mentally as I was in > my prime.  I can’t sustain intense intellectual effort for hour after > hour as I could thirty years ago.  I get tired.  I get absent minded, > and I miss or forget details, especially when there are a lot of > details to keep in mind.  I have to count on experience and intuition > developed from experience because I can no longer count on flashes of > brilliance.  Why do you think people in technical professions go into > management when they get older?  They can’t keep up with those hotshot > kids on the front line any more. > Now, if I were taking statins, I’d be delighted to blame my cognitive > deficits on drug damage.  However, I lucked out in the genetic lottery > and have great blood lipid levels, so I have to admit that people at 55 > are not as sharp as they were at 25.  I wonder how many people are > blaming the cognitive effects of aging on statin use?  It would be a > lot more comforting to feel like a victim of Evil Venal Pharma or the > Arrogant Greedy Misogynistic Medical Establishment than of the natural > process of deterioration with age.  Righteous anger is a very enjoyable > emotion, you know, much more pleasurable than resignation. > COMMENT: > You know, as an aside, I don’t have those "out of the box" flashes as > often anymore, either. I, too, could blame them on statins (which I > have taken off and on, having borderline high lipids but no other risk > factors besides gender). However, I’m a geriatrician, and a realist > about brain-aging. As we age, we trade creativity for wisdom, at best. > The best teams are composed of young turks who don’t know enough to > know what’s supposedly not possible, and the old farts who know too > much (but can still spot the difference between a maybe-idea and > forget-it idea). > SBH

"…forget-it ideal." But you missed it here boyo. I took my posts out because I’m ashamed alright; ashamed for having spent any time talking to you. B’s snore was well-written? <<LOL>>

Response:

> For anyone out there how do you take posts out? I have laid a few eggs in > my > time.

Accept responsibility.  Move on.  Of all the things you might wish to be able to edit, Usenet musings are among the most benign. moo

Response:

>>> much (but can still spot the difference between a maybe-idea and >> forget-it idea). >< Snip, oh, nothing.  There was no response> > "…forget-it ideal."

What ideal?  He said idea.  I realize that Zee the Journalist refuses to learn the difference between obviate and vitiate, even after they are pointed out to her, but idea and ideal are short words. > But you missed it here boyo. I took my posts out because I’m ashamed > alright; ashamed for having spent any time talking to you. >Excessively careful for an anonymous twat.

What gets me is that she can insult Steve in very childish and content-free ways like this, and like implying that his opinions are of no value because of his sex, race and physical appearance, then turn around a few hours later and tell him she respects him and his opinions and knowledge when she wants some medical information about her own health.  Then a few hours later, she’ll insult him again for helping her out, if she doesn’t like what she reads, or thinks she reads. She does this to other knowledgable posters in this group, including the other medical doctors who generally don’t have a political axe to grind like Steve does. I find this rather bizarre. Btw, moo, do you think she’s really Canadian?  I mean, Canadians are noted for their civility, y’know.  Maybe she’s part of a giant CIA plot to convince Americans that we are scum, so it’s okay to invade us and steal all our petroleum?

Response:

For anyone out there how do you take posts out? I have laid a few eggs in my time.

Response:

>> You know, as an aside, I don’t have those "out of the box" flashes as > often anymore, either. I, too, could blame them on statins (which I > have taken off and on, having borderline high lipids but no other risk > factors besides gender). However, I’m a geriatrician, and a realist > about brain-aging. As we age, we trade creativity for wisdom, at best. > The best teams are composed of young turks who don’t know enough to > know what’s supposedly not possible, and the old farts who know too > much (but can still spot the difference between a maybe-idea and > forget-it idea).

< Snip, oh, nothing.  There was no response> > "…forget-it ideal." > But you missed it here boyo. I took my posts out because I’m ashamed > alright; ashamed for having spent any time talking to you.

Excessively careful for an anonymous twat.  If you directed some shame at your reliance on the tax dollars squandered in your favour, that would be something.  The OP is unknowingly spared by virtue that you have no buddies in any branch of the US Government that regulates any of his concerns.  The job you do of misdirecting resources is impressive.  But your narcissistic pride is misplaced.  Nobody, save those feeding at the same trough, gives shit one about you.  You might be able to get a real job if you had to.  But you don’t. moo

Response:

> Many people have no concept of risk vs benefit, although it affects every > aspect of life, medical or otherwise.  Everything has risks.  Risks and > benefits are not easy to quantify, never completely known, but you have > to keep on going, making the best decisions you can with the limited > information available.  What’s more, even with good data, a one in a > million risk is not zero risk.  You might be that one in a million. > That’s > reality.

Not for wards of the state and professional whiners like Zee.  As long as there is someone with power (government) or money (big business) to support and accept blame, there is no need for addressing risk vs. reward.  Life is a continuum of peace disturbed only by the witch burning and necessary visible whining necessary to maintain the correct flow of public resources. Hypocrisy is a side effect that’s easily ignored. moo

Response:

Well written and I agree totally with all of that. I think other people really haven’t thought out completely how they think things should be. There would be no progress for fear of hurting anyone.

Response:

- Hide quoted text — Show quoted text ->> COMMENT: >> They’re not all disadvantaged. Beta-thal major (the big one with the >> transfusion iron overload) affects Africans, Mediterranians, and South >> East Asians. It’s one of these genes selected for by malarial areas, >> you know, like sickle. >Yes. Malarial areas; like parts of Africa. > Cripes.  Thalassemia research and treatment are important in Toronto > because Toronto (and Ontario) has a large population of Italian, Greek > and Portuguese origin.  At one point there were more people living in > Toronto who were born in Italy than there were in Milan. > These people came to Canada after WWII and mostly worked in the construction > trades.  Their children and grandchildren are far from disadvantaged — > they are ordinary middle class and professional people, like Dr. Olivieri.

COMMENT: Exactly so. Duh. Dr. Olivieri is an Italian-Canadian working on a common disease of Italian-Canadians.  It’s middle-class Italians who need iron overload treatment, because poor Africans who have beta-thal-major don’t get enough transfusions to worry about the problem in the first place. Instead, they simply die. Those that do get a few transfusions, get HIV with them, so they don’t have to worry much about long term effects like iron, either. >> As for Olivieri putting loyalty to patients first, did she do them any >> good thereby?  She’s probabaly single handedly responsible for keeping >> deferiprone off the market in Canada and the US. Okay. But most of the >> people who need it are in Europe and Africa. Where it has been >> approved, and is in use. The "disadvantaged" in Canada can’t have it. >This is my opinion: The drug is harmful. Like statins. Like Vioxx. And >pharma has found ways and means to slip through. It’s wrong. They’ve >gone where poverty and hunber move people to do things that may hurt >them. No doubt some similar drug is needed. Some "better" similar drug. >Olivieri can’t stop them from what they’ve done now, although I think >she tried.

COMMENT: Ah, the martyrdom of the lady doctor, risking her career at the university (yeah right– like they’re going to fire a female physician professor), for the sake of the disadvantaged of the world! Such opera! And I see Zee has graced us with her medical opinion on this issue of liver problems, which divides the European drug safety reviewers from the reviewers in North America. She should write them a letter, like she proposed I do: "(signed) Zee, from Usenet…" Alas, as for "poverty and hunger" Zee talks about, I think you and I have both touched on that, albeit not in a way that has penetrated Zee’s noggin. If you’re getting regular transfusions for your thal-major so that you need an iron chelator, you’re not IN the "poverty-and-hunger" class! So QED that’s simply NOT the people the (almost)martyred Dr. Olivieri was developing deferiprone FOR. Okay? Oh, how shabby our fairytales look, when exposed to the light of reality. I also see Zee has erased most of her messages in this thread, probably out of embarrassment. And rightly so. I’d be embarrassed to have writen them, too. For the reasons that you amply set out below, and which are worth everybody reading one more time. – Hide quoted text — Show quoted text -> Well, is this drug better or worse than other treatments?  Is it better > than doing nothing?  How would you find out?  How would you find out if > a "better similar drug" is better or worse, if it’s not ethical to test it? > It isn’t ethical to enroll people in drug trials because the drugs > might harm them.  It isn’t ethical to put them in the placebo group, > because the drugs might benefit them.  Is it ethical to tell people > they’ll just have to suffer and die because it isn’t ethical to > research and test new treatments? > And sorry, poverty and hunger aren’t driving Canadians to take their > children to the Hospital for Sick Children to get the best care they > can find for beta thalassemia.  It’s a disease.  It causes harm.  The > current treatments aren’t ideal.  New treatments may be better.  You > don’t want new treatments to be tested, on poor people or non-poor > people.  You don’t want them to be used without testing.  So how do you > propose we determine whether the new treatment is better than the > current ones?  Is it better to just stick to current treatments, which > also cause harm?  Or not treat at all, and let all the harm be natural? > Statins have been tested, and as Steve says, they can cut stroke risk > by 30% for some people at risk.  If I had a high risk of stroke, a 30% > lowered risk would sound good to me, and I’d try them to see if i could > tolerate the side effects.  If the side effects were hard to bear, I’d > have to weigh that against the benefit, the reduced stroke risk.  I’d > have to do that in absence of perfect knowledge, because nobody has > done a double-blind controlled study on 100,000 clones of me.  Even > that wouldn’t give me perfect knowledge, because I’d have no way of > determining which clones I’d most resemble in response to the drug. > I’m in my mid-fifties, and I know I’m not as sharp mentally as I was in > my prime.  I can’t sustain intense intellectual effort for hour after > hour as I could thirty years ago.  I get tired.  I get absent minded, > and I miss or forget details, especially when there are a lot of > details to keep in mind.  I have to count on experience and intuition > developed from experience because I can no longer count on flashes of > brilliance.  Why do you think people in technical professions go into > management when they get older?  They can’t keep up with those hotshot > kids on the front line any more. > Now, if I were taking statins, I’d be delighted to blame my cognitive > deficits on drug damage.  However, I lucked out in the genetic lottery > and have great blood lipid levels, so I have to admit that people at 55 > are not as sharp as they were at 25.  I wonder how many people are > blaming the cognitive effects of aging on statin use?  It would be a > lot more comforting to feel like a victim of Evil Venal Pharma or the > Arrogant Greedy Misogynistic Medical Establishment than of the natural > process of deterioration with age.  Righteous anger is a very enjoyable > emotion, you know, much more pleasurable than resignation.

COMMENT: You know, as an aside, I don’t have those "out of the box" flashes as often anymore, either. I, too, could blame them on statins (which I have taken off and on, having borderline high lipids but no other risk factors besides gender). However, I’m a geriatrician, and a realist about brain-aging. As we age, we trade creativity for wisdom, at best. The best teams are composed of young turks who don’t know enough to know what’s supposedly not possible, and the old farts who know too much (but can still spot the difference between a maybe-idea and forget-it idea). SBH

Response:

- Hide quoted text — Show quoted text – > I have a different take. The stories involved highlight the > difficulties and politics of medical research… . Yes. > So far so good….but there we part company. > In the Olivieri case, as I understand it, she found the medication was > dangerous, moved to protect her patients, was told to shut-up, refused, > her employers the university and university medical school turned their > backs on her and co-operated with pharma, but not openly, and she and > her associates were hounded, sued, and harrassed by the pharma. > It’s ongoing. > The book and the movie are based on Olivieri. > Zee

As I pointed out, the irony is the arguments used against Olivieri by The Big Establishment are all the same ones you’re using against African drug research. (I guess Leftist rhetoric is all that CAN be used in academic fights). She was in the drug company’s pocket. She did keep using the drug after beginning to suspect it had dangers (but not using it had dangers too, since the disease itself had dangers). She did subject her patients to biospies (not a zero risk thing) to look for these drug dangers, even while continuing the drug. (First, do no harm?  Did any patient fully understand what was happenning? Maybe, maybe not). Eventually she stopped giving the drug. I didn’t see anything dreadfully wrong with anything she did, but then I’m pro-research. Most of what she did was looking for truth. She got hounded. She kept her job. In academia, that’s a yawner. Meanwhile, the drug’s been through a couple of other studies and looks good. It’s not exactly Thalidomide. As I said, time will tell. Liver fibrosis is caused by iron overload, too, and that’s what the drug is given for. Perhaps some patients get fibrosis from it, and some never do, as with alcohol. The world is complex. Drugs are neither wholely good nor bad either, just like people. My (admittedly quick) reading of the whole thing didn’t really turn up anything that smacked of gross incompetence by *anybody.* No patients were killed. Nobody died. Nobody even got fired. Mainly, the biggest mistake was a problem of people shooting off their mouths to the press before all the thinking had been done. Witchhunting vs. Science with Olivieri as this month’s witch. If you have a more cogent analysis, feel free. Again, the relevence of all this to testing lifestyle drugs in Africa is just not there for me. I don’t care how La Carrie got started. SBH

Response:

> > > > http://www.caut.ca/en/issues/academicfreedom/Olivieri_CPSO.pdf > > > Nothing to do with Africa or lifestyle drugs, that’s for sure. > To do with a drug that affects a certain disadvantaged population, a > researcher who put loyalty to her patients first.

COMMENT: They’re not all disadvantaged. Beta-thal major (the big one with the transfusion iron overload) affects Africans, Mediterranians, and South East Asians. It’s one of these genes selected for by malarial areas, you know, like sickle. As for Olivieri putting loyalty to patients first, did she do them any good thereby?  She’s probabaly single handedly responsible for keeping deferiprone off the market in Canada and the US. Okay. But most of the people who need it are in Europe and Africa. Where it has been approved, and is in use. The "disadvantaged" in Canada can’t have it. Riddle me that, Batman.  Where are the bad-guys in this tale?  The Dark Side were we seeking. Clearly find it, we did not. Y.

Response:

>> COMMENT: > They’re not all disadvantaged. Beta-thal major (the big one with the > transfusion iron overload) affects Africans, Mediterranians, and South > East Asians. It’s one of these genes selected for by malarial areas, > you know, like sickle. >Yes. Malarial areas; like parts of Africa.

Cripes.  Thalassemia research and treatment are important in Toronto because Toronto (and Ontario) has a large population of Italian, Greek and Portuguese origin.  At one point there were more people living in Toronto who were born in Italy than there were in Milan. These people came to Canada after WWII and mostly worked in the construction trades.  Their children and grandchildren are far from disadvantaged — they are ordinary middle class and professional people, like Dr. Olivieri. I live in a working class area and many of my neighbours are retired construction workers whose children come in from the suburbs to visit on weekends.  I could tell you some hilarious stories about my Italian neighbour who made his living pouring concrete for 50 years, and his son and son-in-law, stockbrokers, who keep trying to get him to live a higher class lifestyle instead of continuing to grow vegetables in his backyard and make his own wine. People are getting state-of-the-art medical treatment for thalassemia at places like the Hospital for Sick Children, where Olivieri works, a major teaching and research hospital of the University of Toronto, with a world-wide reputation. So how many different ways can you have it?  It’s bad to research drugs on poor people in Africa.  It’s bad to research drugs on well-to-do people in Canada.  It’s bad to research "lifestyle drugs": they should be developing drugs that help people in poor countries.  So here’s a drug that can help people in Africa, Canada and Europe, and it’s bad to research it, too? So who do you test drugs on?  Zee doesn’t think drugs are tested enough, especially enough on women, but she also thinks that testing drugs is exploitive, especially of women.  So if testing is bad, and using without testing is bad, what’s good?  The only conclusion is that only harmless drugs should be tested and used, and let’s ignore that not much is both harmless and effective and the only way to determine how harmless something is is by testing it. Many people have no concept of risk vs benefit, although it affects every aspect of life, medical or otherwise.  Everything has risks.  Risks and benefits are not easy to quantify, never completely known, but you have to keep on going, making the best decisions you can with the limited information available.  What’s more, even with good data, a one in a million risk is not zero risk.  You might be that one in a million.  That’s reality. > As for Olivieri putting loyalty to patients first, did she do them any > good thereby?  She’s probabaly single handedly responsible for keeping > deferiprone off the market in Canada and the US. Okay. But most of the > people who need it are in Europe and Africa. Where it has been > approved, and is in use. The "disadvantaged" in Canada can’t have it. >This is my opinion: The drug is harmful. Like statins. Like Vioxx. And >pharma has found ways and means to slip through. It’s wrong. They’ve >gone where poverty and hunber move people to do things that may hurt >them. No doubt some similar drug is needed. Some "better" similar drug. >Olivieri can’t stop them from what they’ve done now, although I think >she tried.

Well, is this drug better or worse than other treatments?  Is it better than doing nothing?  How would you find out?  How would you find out if a "better similar drug" is better or worse, if it’s not ethical to test it? It isn’t ethical to enroll people in drug trials because the drugs might harm them.  It isn’t ethical to put them in the placebo group, because the drugs might benefit them.  Is it ethical to tell people they’ll just have to suffer and die because it isn’t ethical to research and test new treatments? And sorry, poverty and hunger aren’t driving Canadians to take their children to the Hospital for Sick Children to get the best care they can find for beta thalassemia.  It’s a disease.  It causes harm.  The current treatments aren’t ideal.  New treatments may be better.  You don’t want new treatments to be tested, on poor people or non-poor people.  You don’t want them to be used without testing.  So how do you propose we determine whether the new treatment is better than the current ones?  Is it better to just stick to current treatments, which also cause harm?  Or not treat at all, and let all the harm be natural? Statins have been tested, and as Steve says, they can cut stroke risk by 30% for some people at risk.  If I had a high risk of stroke, a 30% lowered risk would sound good to me, and I’d try them to see if i could tolerate the side effects.  If the side effects were hard to bear, I’d have to weigh that against the benefit, the reduced stroke risk.  I’d have to do that in absence of perfect knowledge, because nobody has done a double-blind controlled study on 100,000 clones of me.  Even that wouldn’t give me perfect knowledge, because I’d have no way of determining which clones I’d most resemble in response to the drug. I’m in my mid-fifties, and I know I’m not as sharp mentally as I was in my prime.  I can’t sustain intense intellectual effort for hour after hour as I could thirty years ago.  I get tired.  I get absent minded, and I miss or forget details, especially when there are a lot of details to keep in mind.  I have to count on experience and intuition developed from experience because I can no longer count on flashes of brilliance.  Why do you think people in technical professions go into management when they get older?  They can’t keep up with those hotshot kids on the front line any more. Now, if I were taking statins, I’d be delighted to blame my cognitive deficits on drug damage.  However, I lucked out in the genetic lottery and have great blood lipid levels, so I have to admit that people at 55 are not as sharp as they were at 25.  I wonder how many people are blaming the cognitive effects of aging on statin use?  It would be a lot more comforting to feel like a victim of Evil Venal Pharma or the Arrogant Greedy Misogynistic Medical Establishment than of the natural process of deterioration with age.  Righteous anger is a very enjoyable emotion, you know, much more pleasurable than resignation.

Response:

> > > As Le Care’s book, the movie and the reviewer point out, third-world > > people are being used to test lifestyle drugs for the west. > The fact that they all say that in promoting their book and movie, > means nothing. I’ve heard the same about the DaVinci Code. This is > called media hype. > I have no idea who Da Vinci is. Did I read his book? You don’t mean THE > Da Vinci I think.

I do. You don’t get out much, do you? http://www.danbrown.com/novels/davinci_code/reviews.html > The Constant Gardener is based on fact. I know the fact it’s based on.

And what would those be? This Dr. Olivieri wasn’t murdered. She wasn’t testing drugs on Africans, but Americans with a fatal disease. I’m not even sure her concerns will turn out to be justified. She seems to have acted with integrity. But she also may have been wrong. The people who went after her seem to have been doing the drug company’s dirty work, but they were using leftist arguments (lack of informed consent, experimental procedures not in patient’s interests, administration of drugs even after safety concerns were raised, yada.)  So again, what is your point? If Ferriprox turns out to be new Canadian drug, then woo hoo for you-all. If it turns out to cause liver fibrosis then Health Canada’s gunna be embarrassed. But time will tell. Sometimes there are no good or bad guys in these tales. You try something new; it works or it doesn’t. > Say, do you read anything into the fact that the Harrison Ford remake > of the old Fugitive series featured the new fact that the one-armed man > actually turned out to work for the pharm companies?  Consider it. > Might be true. Had to have a jumping off point, there, too. And a > train. > Having a night in with the dogs are we?

Looks like it.  :)))  Say woof. > What’s a "lifestyle drug?" Are these modern Mengeles torturing > Tanzanians with poisonous baldness and acne cures? What? I need > examples. > They’re the ones you’re horking.

Is that the best you can do? > You know, I once heard Viagra mentioned as a "lifestyle drug." But > since you yourself did a certain amount of complaining about > misogynistic male doctors being inappropriately unconcerned about the > thought of women possibly losing their sexual function, I’m sure I > won’t hear any of THAT coming from you, when it comes to same > happenning to the opposite sex. > I wouldn’t use such drugs. They’re not safe; carcinogenic. There are > other ways and means. Beginning with not removing healthy organs.

Sometimes you need to, for maximum safety. It’s a lifestyle choice, I suppose. Do you want your future style to include "life"? As in breathing? > Far different to do sparring surgeries where possible (and there are > some just not usually used for post-menopausal women–yet) than to > eviscerate and then think a lifestyle drug will fill in. > Viagra is a lifestyle drug.

None of these surgeries are perfect. And if I said the same about urinary incontience drugs (used mainly by women) I think you’d get the point. Lifestyle drugs they are. You can wear a diaper. > Tell me Steve which came first; the Statin or the Viagra?

Gunna suggest statins are lifestyle drugs?  30% stroke reduction?  I guess the wheelchair is a lifestyle too. – Hide quoted text — Show quoted text -> > Your scenario ain’t what’s goin’ down. > > There’s a real life story that Le Carre’s used as jumping off point for > > his book.  Ever heard of Nancy Olivieri? > No. Had to Google her: > http://www.caut.ca/en/issues/academicfreedom/Olivieri_CPSO.pdf > Nothing to do with Africa or lifestyle drugs, that’s for sure. The > stuff with liver biopsies and nasty drug companies did remind me of the > Fugitive Movie, though. Though no murders or one-armed men. > I think the drug itself, Ferriprox, might fly. God knows we need a good > oral iron chelator. > http://www.news.utoronto.ca/bin3/020910f.asp > The stories involved highlight the difficulties and politics of medical > research, where two alternative treatments are being compared, in the > treatment of an otherwise fatal problem when not treated (transfuion > iron overload in thal major). > You brought up the cse. Would you like to make your point, here? Cause > after going through all this, it wasn’t obvious. > SBH

Response:

> As Le Caree’s book, the movie and the reviewer point out, third-world > people are being used to test lifestyle drugs for the west.

The fact that they all say that in promoting their book and movie, means nothing. I’ve heard the same about the DaVinci Code. This is called media hype. Say, do you read anything into the fact that the Harrison Ford remake of the old Fugitive series featured the new fact that the one-armed man actually turned out to work for the pharm companies?  Consider it. Might be true. Had to have a jumping off point, there, too. And a train. What’s a "lifestyle drug?" Are these modern Mengeles torturing Tanzanians with poisonous baldness and acne cures? What? I need examples. You know, I once heard Viagra mentioned as a "lifestyle drug." But since you yourself did a certain amount of complaining about misogynistic male doctors being inappropriately unconcerned about the thought of women possibly losing their sexual function, I’m sure I won’t hear any of THAT coming from you, when it comes to same happenning to the opposite sex. We’d have to send you to mandatory gender-issues sensitivity training. > Essential drugs: > http://www.essentialdrugs.org/index.php > Rational use of essential medicines: > http://www.haiweb.org/01_about_a.htm

Terrible lack of information. The point? > Your scenario ain’t what’s goin’ down. > There’s a real life story that Le Carre’s used as jumping off point for > his book.  Ever heard of Nancy Olivieri?

No. Had to Google her: http://www.caut.ca/en/issues/academicfreedom/Olivieri_CPSO.pdf Nothing to do with Africa or lifestyle drugs, that’s for sure. The stuff with liver biopsies and nasty drug companies did remind me of the Fugitive Movie, though. Though no murders or one-armed men. I think the drug itself, Ferriprox, might fly. God knows we need a good oral iron chelator. http://www.news.utoronto.ca/bin3/020910f.asp The stories involved highlight the difficulties and politics of medical research, where two alternative treatments are being compared, in the treatment of an otherwise fatal problem when not treated (transfuion iron overload in thal major). You brought up the cse. Would you like to make your point, here? Cause after going through all this, it wasn’t obvious. SBH

Response:

> > I’m not sure that would work well. Many of the diseases in the Western world > are caused by lifestyle – e.g. obesity. So, for example, a statin trial might > detect side effects but could not tell how well it works. Also genetic > differences might be an issue. > Bill > Well whether it would work very well or not is now beside the point, > because this is being done. So that means some not very good science is > going on. Eh?

COMMENT: Non. What’s the point of testing a drug if you can’t show an effect on the disease it’s supposed to treat, because the disease wasn’t present? What’s the drug company going to do with THAT data? Again, one must distinguish small pilot trials looking for toxic effects and at kinetics, from the larger trials where the drugs really are being used against a disease, and will generally be compared against the best existing standard treatment. The first kind of trial, for not-very-toxic drugs, was in the past often done in healthy people, who were paid, or who volunteered. Or got some benefit half-way in between, like days-off-with pay from work. Example: You don’t want to do your first small trials of an antidepressant in people who are actually depressed!  Depressed people have more of every kind of complaint, they don’t take their pills, they don’t show up for check visits, they overdose, they’re generally very difficult. If you really want to know the actual side effects caused by the anti-depressant pill itself, not the disease it’s used to treat, you give it to some perfectly happy people (along with placebo) and see what happens to THEM. But those people could be in the US or Africa— from the ethical view it makes no difference. Those healthy happy people don’t get any benefit, unless it’s serice to mankind, or your money. Would you deny them either? SBH SBH

Response:

- Hide quoted text — Show quoted text – > ‘The Constant Gardener’: What the Movie Missed > "…drug companies {to} shift the burden of experimentation away from > Western consumers and onto the world’s poor–with all the moral > quandaries, ethical lapses and egregious violations that inevitably > follow." > "…90 percent of the global medical research budget takes aim at > illnesses that cause just 10 percent of the world’s disease burden. > by SONIA SHAH > As I found while researching a book on the topic, experimental > protocols that would be condemned as unethical in the West–including > placebo trials among ailing AIDS patients–are frequently described in > the medical press; when the subjects are poor Africans or Asians, nary > an eye is batted.

COMMENT: There is some debate about whether or not placebo controlled trials are ethical in places were, without the trial, ALL of the patients would get no treatment (instead of just half of them). In Africa, the politically correct way to put it is that the placebo group are given a sugar pill and returned to the usual standard of medical are for their culture. Including all those "traditional medicines and remedies" and healing ceremonies which we’re all supposed to be so respectful of. Except when it suits us to be polemical about them. And they DON’T get the dangerous drug that we’re all so concerned about here. But they do get paid for being in the trial. So where now, the ethics? There is also a difference in expectation for placebo between small (phase I and II) trials in which the drug is being tested for side effects (and sometimes initial effect), and the larger phase III trials in which it is almost always compared with the best standard medical treatment, if an active one exists. If phase III trials are being done in Africa without providing the best standard treatment as alternative, the drug companies are being stupid, because they’ll need to do this eventually. Are they being accused of frank stupidity, here? > As the film makes all too clear, Big Pharma’s new experimental bodies > in the developing world only rarely enjoy the benefits of the research > they participate in. Sometimes the new drugs are unlicensed in their > countries or priced out of reach, but more often the drugs are > irrelevant to the medical needs of their communities. After all, 90 > percent of the global medical research budget takes aim at illnesses > that cause just 10 percent of the world’s disease burden. And so, while > 500 million cases of malaria rage across the developing world, the > working poor of India, South Africa and elsewhere, desperate for the > kind of high-tech care available to them almost solely through clinical > research, line up for experimental doses of the latest arthritis, heart > disease and obesity drugs.

COMMENT: Perhaps in small phase I trials (looking for tox and side effects, and doing pharmakinetics). But that’s the same anywhere– they often aren’t expected to be of use to the population trying them (especially if it’s a drug of low toxicity being tested). That’s where the money come in, and Africans can use it more than anyone. Nobody in their right mind would do a major phase III trial of obestity drugs in a population without obesity, or a heart disease drug in a population without much heart disease. Again, the drug companies aren’t that dumb. So this reporter needs to differentiate types of trials. Again, for the small lead-in phase I trials, often nobody is expected to benefit anyway, and that’s why they’re often paid (both in the US and Africa). In the larger trials, done on diseased patients, you have to have patients with the proper disease, so by definition what the author is talking about cannot happen. > That the film makes no allowance for this reality is more than a > problem of accuracy. Our reluctance to acknowledge the risks of drug > development is the single biggest reason why drug companies have fled > the empty test clinics of the United States and Western Europe to set > up shop in Africa, Asia, Eastern Europe and Latin America in the first > place. On average, every American buys more than ten prescription drugs > every year, and yet most are loath to participate in the clinical > trials that make new drugs possible. Less than one in twenty Americans > take part in experimental trials, with half the American public > maligning test subjects as "guinea pigs," according to a June 2004 > Harris poll.

COMMENT: The fact that fewer than 1 in 20 has done it, does NOT mean "most are loathe" to do it. That’s nonsense. The reason is nobody ever asked them to. The reason more clinical studies of drugs aren’t done in the US has nothing to do with risk to the patient, and everything to do with risk to the company in our local legal climate. > The logical outcome of this "all gain, no pain" attitude toward modern > drugs is for drug companies to shift the burden of experimentation away > from Western consumers and onto the world’s poor–with all the moral > quandaries, ethical lapses and egregious violations that inevitably > follow. To paraphrase the rousing finale of The Constant Gardener, we > enjoy the benefits of civilization so affordably because their lives > are bought so cheaply. To end the cycle, we must own up to the risks of > developing new drugs, and decide together how much we are willing to > take on and who shall pay the price.

COMMENT: We know who will pay the economic price— and it’s not Africa. As for risks, that’s not the issue. In the US, the most litigious country on the planet, where you can be found liable civilly for 400 million dollars if one of your study subjects drops dead of a heart attack the jury thinks he shouldn’t have had, nobody is going to do clinical medical research any more. Nobody can AFFORD it. Human research is outsourced because of legal costs and regulatory burden, not for lack of people with courage to take risks. It wasn’t always this way. The first dose of the first anit-HIV drug AZT ever to be taken by a human being, was taken by a perfectly healthy Burroughs Wellcome senior executive, in 1985. In North Carolina. That was phase I. It took 16 months to get that drug from that moment, to market. But it’s all gone down-hill from there. SBH

Response:

> the Tuskegee Syphilis Study, in which >government doctors denied treatment to black syphilitics, regularly >appeared in the medical press from the 1930s onward. That study wasn’t >terminated until 1972.)

Shortly after I joined the USAF early in 1963, one of the med techs that was processing us at Lackland AFB in Texas shot me with one of those trans-dermal injectors saying that "…. this is some kind of test and you’re gonna be really sick for awhile…". Sure enough, I was really, *really*, REALLY sick for about two weeks. No idea what it was – but in more cynical moments, it occurs to me maybe they experiment on GI’s before wasting the money on animals… — PeteCresswell

Response:

I’m not sure that would work well. Many of the diseases in the Western world are caused by lifestyle – e.g. obesity. So, for example, a statin trial might detect side effects but could not tell how well it works. Also genetic differences might be an issue. Bill

‘The Constant Gardener’: What the Movie Missed "…drug companies {to} shift the burden of experimentation away from Western consumers and onto the world’s poor–with all the moral quandaries, ethical lapses and egregious violations that inevitably follow." "…90 percent of the global medical research budget takes aim at illnesses that cause just 10 percent of the world’s disease burden. by SONIA SHAH A lush, atmospheric drama, The Constant Gardener brings unprecedented exposure to crucial issues facing the Western pharmaceutical industry and all those who partake of it. Set mostly in a sun-dappled Kenya and based on a John le Carr

]]> http://arthritis-wiki.org/rheumatoid-arthritis/wheelies-501318.html/feed 0 http://arthritis-wiki.org/joint-arthritis/knuckle-cracking-193734.html http://arthritis-wiki.org/joint-arthritis/knuckle-cracking-193734.html#comments Thu, 27 Jan 2005 00:00:00 +0000 admin http://arthritis-wiki.com/uncategorized/knuckle-cracking-193734.html Question:

Done that all my life. No side-effects yet. (42). db

Response:

Hello all.  I was wondering if there are fellow knuckle crackers out there, and if it effects there playing at all.  I haven’t seen much of an effect in mine…but my hand have been getting slightly sore the past couple days…but it might be the subzero temps here in PA.  But, did anyone hear of any effects of cracking knuckles and effects it had on playing the bass or guitar?  Later.

Response:

> Hello all.  I was wondering if there are fellow knuckle crackers out there, > and if it effects there playing at all.  I haven’t seen much of an effect in > mine…but my hand have been getting slightly sore the past couple > days…but it might be the subzero temps here in PA.  But, did anyone hear > of any effects of cracking knuckles and effects it had on playing the bass > or guitar?  Later.

It can lead to joint pain and inflamation, which I think folks can agree wouldn’t be good for you.   This is is a fairly detailed answer…. Q: Is it good or bad to crack your knuckles?           http://answers.google.com/answers/threadview?id=121033 Lots of other discussions that are googleable too.  It does not lead to arthritis though…that’s been flagged as an old wive’s tale.   Best Regards, —   /"  ASCII Ribbon Campaign                | Todd H   /                                       | http://www.toddh.net/    X   Promoting good netiquette            | http://triplethreatband.com/   /  http://www.toddh.net/netiquette/     | "4 lines suffice."

Response:

I crack my knuckles, and I play fine (if not better) afterward.

– Hide quoted text — Show quoted text -> Hello all.  I was wondering if there are fellow knuckle crackers out > there, and if it effects there playing at all.  I haven’t seen much of an > effect in mine…but my hand have been getting slightly sore the past > couple days…but it might be the subzero temps here in PA.  But, did > anyone hear of any effects of cracking knuckles and effects it had on > playing the bass or guitar?  Later.

Response:

makes me play better, ~Mo Fo

: Hello all.  I was wondering if there are fellow knuckle crackers out there, : and if it effects there playing at all.  I haven’t seen much of an effect in : mine…but my hand have been getting slightly sore the past couple : days…but it might be the subzero temps here in PA.  But, did anyone hear : of any effects of cracking knuckles and effects it had on playing the bass : or guitar?  Later. : :

Response:

> Hello all.  I was wondering if there are fellow knuckle crackers out there, > and if it effects there playing at all.  I haven’t seen much of an effect in > mine…but my hand have been getting slightly sore the past couple > days…but it might be the subzero temps here in PA.  But, did anyone hear > of any effects of cracking knuckles and effects it had on playing the bass > or guitar?  Later.

Yes, I’ve been cracking my knuckles since I was in my teens.  My hands get a little stiff sometimes, but I think that ’cause I’ve abused them in other ways over the years and I’m getting old.  If I remember to do it I usually wiggle my fingers for 20 or 30 seconds before I play.  That helps loosen things up a lot. Bud

Response:

LOL, I was wondering about that subject line! I spoke to my GI’s Fellow since I was taking Vioxx.  I see my GI next week and will discuss it with him further.  Most likely I will be switched to Celebrex, which is also a Cox 2 inhibitor.  I have heard that there can be more GI problems with Celebrex, which is an individual reaction (the story of an IBD patient’s life so it seems).  Good luck!  mgbio – Hide quoted text — Show quoted text – > I can’t type (or read apparently)…I meant IBD! >Hi everyone. >I am 29.  I have been diagnosed with Chrohn’s/Colitis for about 4 years >now. Currently on Remicade, Imuran and Asacol, I have been in remision for >about 1 year. >I suffered a pretty good 2nd degree ankle sprain a couple weeks back.  Now >I have some tendonitis in my foot that is causing a lot of discomfort.  My >GI prescribed my 100mg/day of Celebrex at the request of my orthopedic. >The GI told me that I *might* experience problems with it…but mostly >likely not. >So, I was wondering if any of you with similar conditions have taken >Celebrex and how it went?  Did you have any negative side effects?  I >really don’t want to jeopardize how well I have been feeling lately unless >others have been ok with it. >Thanks >— >JD

Response:

thanks Susan… Mary

– Hide quoted text — Show quoted text -> I am on Celebrex and have been for years after having the gi remove me from > it and keeping me off for a miserable two months or so (don’t remember > exactly) to see if anything changed with me.  The only thing that changed > was the joint pain from arthritis.  I have been on them now a straight 2+ > years with no problems.  HTH! UM MOM Susan > I’d like to know this also.  Jeff is going on this for his arthritis. >> Hi everyone. >> I am 29.  I have been diagnosed with Chrohn’s/Colitis for about 4 years > now. >> Currently on Remicade, Imuran and Asacol, I have been in remision for > about >> 1 year. >> I suffered a pretty good 2nd degree ankle sprain a couple weeks back. >> Now > I >> have some tendonitis in my foot that is causing a lot of discomfort. My > GI >> prescribed my 100mg/day of Celebrex at the request of my orthopedic. The > GI >> told me that I *might* experience problems with it…but mostly likely > not. >> So, I was wondering if any of you with similar conditions have taken >> Celebrex and how it went?  Did you have any negative side effects?  I > really >> don’t want to jeopardize how well I have been feeling lately unless >> others >> have been ok with it. >> Thanks >> — >> JD

Response:

I am on Celebrex and have been for years after having the gi remove me from it and keeping me off for a miserable two months or so (don’t remember exactly) to see if anything changed with me.  The only thing that changed was the joint pain from arthritis.  I have been on them now a straight 2+ years with no problems.  HTH! UM MOM Susan – Hide quoted text — Show quoted text -> I’d like to know this also.  Jeff is going on this for his arthritis. > Hi everyone. > I am 29.  I have been diagnosed with Chrohn’s/Colitis for about 4 years > now. > Currently on Remicade, Imuran and Asacol, I have been in remision for > about > 1 year. > I suffered a pretty good 2nd degree ankle sprain a couple weeks back. > Now > I > have some tendonitis in my foot that is causing a lot of discomfort.  My > GI > prescribed my 100mg/day of Celebrex at the request of my orthopedic.  The > GI > told me that I *might* experience problems with it…but mostly likely > not. > So, I was wondering if any of you with similar conditions have taken > Celebrex and how it went?  Did you have any negative side effects?  I > really > don’t want to jeopardize how well I have been feeling lately unless > others > have been ok with it. > Thanks > — > JD

Response:

http://arthritis.about.com/od/analgesic/a/palladone.htm  This is also on the FDA site which is the new Palladone for pain control.  Thought this might help with something new that your body hasn’t taken before.  UM MOM Susan

– Hide quoted text — Show quoted text -> You are no longer what the call "opiate niave" this is a normal status for > someone who has been on narcotics for an extended period of time.  This is > not something that you should be emarrassed about or even worried about. > As long as you are taking narcotics for a purpose you will not  become an > addict.  I am on a program of oxycontin, a slow reelease form of oxycodone > and when the pain gets too bad I take straight oxycodone.  I also take > dexedrine aat breakfast and lunch so that I won’t be groggy.  I had a > flaare and noticed that I was taking  oxycodone much more frequently, the > Dr increased my oxycontin and my consumption of  straight oxycodone went > down.  This scheme was developed by two anesthetists and a psychiatrist, I > have been on it for a year and it works great. > My GI is a firm believer in providing as much comfort as possible for her > IBD patients she says we have a right to it  and any doctor who does not > provide  adequate pain control the physician in question is not doing > his/her duty. > I don’t know if the tolerance will go down  as long as you are on pain > control medication.   By the was Demerol 75 isn’t bad, I usually get > 100-125.  For additional comparison, a Percocet 10 contains 10 mg of > oxycodone, caffiene, and aceteminophen. > As long as you are taking you medication for pain control and for the high > you are not doing anything wrong. > I hope that I was able to help.  I have been through this discussion with > my GI many times because Of an intrinsic fear of over using my meds.  She > always puts my mind to rest over it. > Good luck, be comfortable – Paul >Im 24 and have been diagnosed with crohns for 11 years now and i have a >extremely high tolerance to pain medication. While in the hospital >anything >lower than demerol 75, or Diuldad 4, doesn’t affect me at all. At home im >on >percocet 10’s. I’ve tried the fentanul patches but i dont care for them >much. Any idea’s or thoughts where i should go from here. >PS:How long does it take for a tolerance to go down?

Response:

> My GI is a firm believer in providing as much comfort as possible for > her   IBD patients she says we have a right to it  and any doctor who > does not provide  adequate pain control the physician in question is not > doing his/her duty.

My GI has been pretty good with my pain medicatin, but lately he said he didn’t want to be my drug dealer. I normally run out of my pain meds before before my next refill. Like with the oxycodone, im suppose to take 6 a day, but i have to take 6 just to get any effect. > I don’t know if the tolerance will go down  as long as you are on pain > control medication.   By the was Demerol 75 isn’t bad, I usually get > 100-125.  For additional comparison, a Percocet 10 contains 10 mg of > oxycodone, caffiene, and aceteminophen.

75 of demerol wasn’t really that effective, well it was but only for like a hour or so. They refused to increase my dosage.  The most i was on was 150, which i think is the max. > As long as you are taking you medication for pain control and for the > high you are not doing anything wrong. > I hope that I was able to help.  I have been through this discussion > with my GI many times because Of an intrinsic fear of over using my > meds.  She always puts my mind to rest over it.

I normally go out of town to hospitals, at the local hospital here they treat me like im some kind of drug addict, So ill drive for an rather than deal with the ebarressment and frustration > Good luck, be comfortable – Paul

Thank you for you help paul – Hide quoted text — Show quoted text ->Im 24 and have been diagnosed with crohns for 11 years now and i have a >extremely high tolerance to pain medication. While in the hospital anything >lower than demerol 75, or Diuldad 4, doesn’t affect me at all. At home im on >percocet 10’s. I’ve tried the fentanul patches but i dont care for them >much. Any idea’s or thoughts where i should go from here. >PS:How long does it take for a tolerance to go down?

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You are no longer what the call "opiate niave" this is a normal status for someone who has been on narcotics for an extended period of time.   This is not something that you should be emarrassed about or even worried about.  As long as you are taking narcotics for a purpose you will not  become an addict.  I am on a program of oxycontin, a slow reelease form of oxycodone and when the pain gets too bad I take straight oxycodone.  I also take dexedrine aat breakfast and lunch so that I won’t be groggy.  I had a flaare and noticed that I was taking   oxycodone much more frequently, the Dr increased my oxycontin and my consumption of  straight oxycodone went down.  This scheme was developed by two anesthetists and a psychiatrist, I have been on it for a year and it works great. My GI is a firm believer in providing as much comfort as possible for her   IBD patients she says we have a right to it  and any doctor who does not provide  adequate pain control the physician in question is not doing his/her duty. I don’t know if the tolerance will go down  as long as you are on pain control medication.   By the was Demerol 75 isn’t bad, I usually get 100-125.  For additional comparison, a Percocet 10 contains 10 mg of oxycodone, caffiene, and aceteminophen. As long as you are taking you medication for pain control and for the high you are not doing anything wrong. I hope that I was able to help.  I have been through this discussion with my GI many times because Of an intrinsic fear of over using my meds.  She always puts my mind to rest over it. Good luck, be comfortable – Paul – Hide quoted text — Show quoted text – >Im 24 and have been diagnosed with crohns for 11 years now and i have a >extremely high tolerance to pain medication. While in the hospital anything >lower than demerol 75, or Diuldad 4, doesn’t affect me at all. At home im on >percocet 10’s. I’ve tried the fentanul patches but i dont care for them >much. Any idea’s or thoughts where i should go from here. >PS:How long does it take for a tolerance to go down?

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Im 24 and have been diagnosed with crohns for 11 years now and i have a extremely high tolerance to pain medication. While in the hospital anything lower than demerol 75, or Diuldad 4, doesn’t affect me at all. At home im on percocet 10’s. I’ve tried the fentanul patches but i dont care for them much. Any idea’s or thoughts where i should go from here. PS:How long does it take for a tolerance to go down?

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All I can say is that I do take Elavil (brand name of your med that I cannot spell!!  LOL) I take 10 mg every night at bedtime for sleep.  Any time I have ever been given this medication, it has always been either for sleep or for use as a muscle relaxant.  I don’t know how it would be used for OT but I guess I can sort of see a slight connection.  Give it a shot. What have you got to loose except maybe some pain.  By the way, I also take about 16 other medications every day throughout the day, (no lie) and it does not conflict with any of my other medications.  Just thought I would pass this on.     Margie CD Class of 67 UC Class of 96

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I was prescribed it because, at low doses, it helps alleviate gut pain. My GI told me about it and prescribed it for me. Debs – Hide quoted text — Show quoted text – > In the early days CD Amitriptyline was prescribed to me by my Doc. It gave > me the best Pain relief I’d had in Months. > John H(I) >I have crohns and Osteoarthritis. I have 4×500mg Pentasa a >day for Crohns but have been offered Amitriptyline 10mg >increasing if required to 40mg/day  for my OA. Anyone have >any experience or comments on the Amitriptyline and possible >effects on my crohns, or on these medications together? Very >concerned about possible side effects! >Also, I’ve been using tramadol hydrochloride for a couple of >days and noticed some reduction in OA pain, but so weird >side effects too – confusion, shaking, sleeplessness, >strange eye moments. Not often but worrying. Any thoughts on >this?? Thanks.

– remove YOURFOOT before responding

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In the early days CD Amitriptyline was prescribed to me by my Doc. It gave me the best Pain relief I’d had in Months. John H(I)

– Hide quoted text — Show quoted text -> I have crohns and Osteoarthritis. I have 4×500mg Pentasa a > day for Crohns but have been offered Amitriptyline 10mg > increasing if required to 40mg/day  for my OA. Anyone have > any experience or comments on the Amitriptyline and possible > effects on my crohns, or on these medications together? Very > concerned about possible side effects! > Also, I’ve been using tramadol hydrochloride for a couple of > days and noticed some reduction in OA pain, but so weird > side effects too – confusion, shaking, sleeplessness, > strange eye moments. Not often but worrying. Any thoughts on > this?? Thanks.

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I remember when i used to take amitripilines they use to make me sleep for like 2-3 days straight.

– Hide quoted text — Show quoted text -> I have crohns and Osteoarthritis. I have 4×500mg Pentasa a > day for Crohns but have been offered Amitriptyline 10mg > increasing if required to 40mg/day  for my OA. Anyone have > any experience or comments on the Amitriptyline and possible > effects on my crohns, or on these medications together? Very > concerned about possible side effects! > Also, I’ve been using tramadol hydrochloride for a couple of > days and noticed some reduction in OA pain, but so weird > side effects too – confusion, shaking, sleeplessness, > strange eye moments. Not often but worrying. Any thoughts on > this?? Thanks.

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I was on Amitriptyline, 50mg at bedtime with no effects other than sleeping. No drowsiness upon waking and no belly problems.  I no longer take them now though.  I also tried tramadol long ago, I guess it was around 2000 but I got nothing from them at all, no difference with the pain but no side effects either.  You need to tell your dr about these side effects because either of these meds could be the culprit of a reaction.  UM MOM Susan

– Hide quoted text — Show quoted text ->I have crohns and Osteoarthritis. I have 4×500mg Pentasa a > day for Crohns but have been offered Amitriptyline 10mg > increasing if required to 40mg/day  for my OA. Anyone have > any experience or comments on the Amitriptyline and possible > effects on my crohns, or on these medications together? Very > concerned about possible side effects! > Also, I’ve been using tramadol hydrochloride for a couple of > days and noticed some reduction in OA pain, but so weird > side effects too – confusion, shaking, sleeplessness, > strange eye moments. Not often but worrying. Any thoughts on > this?? Thanks.

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That is why, after reading the material, you need to discuss your concerns with your doctor so he/she can advise you and more specifically taylor the discussion to your medical condition. Knowing me, my doctors will give me concrete facts from studies that have been done.  They do this because they know that because of my own science background I will accept nothing less than actual data on which I can base my decisions.  mgbio – Hide quoted text — Show quoted text – > Thanks for that – I’ll check that site. I have looked at a > couple of others but it’s all rather confusing, and tends to > deal with quite general statements about side effects and so > on – for example, these two medications taken together, one > site says, greatly increases the chances of seizure. I beg > your pardon!!! I mean just how a chance is this? > As I live in the UK I see my GP as a first line doctor, who > can then refer me to a specialist, rather than by my > contacting the specialist directly in the first instance > (although I can do this if something seemed seriously > amiss). The GP who prescribed tramadol did so about a month > ago, while the GP prescribing Amitriptyline was a different > one who nevertheless know of my Crohns and of the tramadol. > All very confusing! To many doctors around here … ! > I’ve been back at work the last couple of days after a brief > holiday but after taking tramadol twice in one day (2×2x50mg > tablets), noticed myself showing several of the net listed > side effects of tramadol – sweating, mind confusion, mild > loss of balance, strange eye movements, sleeplessness and > even mild anxiety attacks related to the medication and > dying! Call me a wimp but I’m not usually like that, > which is why I tried the net and asked here in case anyone > else had experience of these. > I am due to see my GP in a week, and think that I might ease > off on the tramadol, or stop completely and move to the > amitryptyline as suggested by the second doc. Another part > of me wants to stop the damn medications completely and just > put up with the pain without the worry! > *sigh* Oh for the simple life.. >Hi Jim, >You can do some research on your own on the various drugs through such websites as http://www.rx.com (they gave a nice overview of the drug uses, side effects and interactions) as well as other pharmaceutical and health sites.  Then, take what you have learned and speak to your GI, discussing your concerns about these meds.  If he/she was not the one to offer you the medications who was and are they working in consultation with your GI?  If not, they should be.  I can tell you that Amitriptyline has been used by some people quite successfully to relieve chronic pain, for which OA would quality as well as CD.  The side effects you are experiencing are disturbing and should be discussed with your doctor immediately. >Good luck! >:)  mgbio >>I have crohns and Osteoarthritis. I have 4×500mg Pentasa a >>day for Crohns but have been offered Amitriptyline 10mg >>increasing if required to 40mg/day  for my OA. Anyone have >>any experience or comments on the Amitriptyline and possible >>effects on my crohns, or on these medications together? Very >>concerned about possible side effects! >>Also, I’ve been using tramadol hydrochloride for a couple of >>days and noticed some reduction in OA pain, but so weird >>side effects too – confusion, shaking, sleeplessness, >>strange eye moments. Not often but worrying. Any thoughts on >>this?? Thanks.

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Hi Jim, You can do some research on your own on the various drugs through such websites as http://www.rx.com (they gave a nice overview of the drug uses, side effects and interactions) as well as other pharmaceutical and health sites.  Then, take what you have learned and speak to your GI, discussing your concerns about these meds.  If he/she was not the one to offer you the medications who was and are they working in consultation with your GI?  If not, they should be.  I can tell you that Amitriptyline has been used by some people quite successfully to relieve chronic pain, for which OA would quality as well as CD.  The side effects you are experiencing are disturbing and should be discussed with your doctor immediately. Good luck!  mgbio – Hide quoted text — Show quoted text – > I have crohns and Osteoarthritis. I have 4×500mg Pentasa a > day for Crohns but have been offered Amitriptyline 10mg > increasing if required to 40mg/day  for my OA. Anyone have > any experience or comments on the Amitriptyline and possible > effects on my crohns, or on these medications together? Very > concerned about possible side effects! > Also, I’ve been using tramadol hydrochloride for a couple of > days and noticed some reduction in OA pain, but so weird > side effects too – confusion, shaking, sleeplessness, > strange eye moments. Not often but worrying. Any thoughts on > this?? Thanks.

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(Drill Sgt. voice) Well, maggot, since I see yer still awake & posting now, I just thought you’d like to know that:  not only does Charo run circles around you on the six string – she looks 10x better than you, too! And she’s 63!!!!   hahhahahahha "Put that in yer Bell cell phone & smoke it" LOL http://www.imdb.com/name/nm0004819/

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>(Drill Sgt. voice) >Well, maggot, since I see yer still awake & posting now, I just >thought you’d like to know that:  not only does Charo run circles >around you on the six string – she looks 10x better than you, too! >And she’s 63!!!!   hahhahahahha >"Put that in yer Bell cell phone & smoke it" >LOL >http://www.imdb.com/name/nm0004819/

Mulish better not be dissing Charo, that would be a serious escalation. Charo rocks. Andres Segovia had few bad students. Charo’s not one. Marc should stick to his kind of woman[1] http://www.dumpstersluts.com/dump/ Claude [1] Parental Advisory: Don’t look at this site if you are under 18, prudish, or squeamish.

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<< Marc should stick to his kind of woman[1] http://www.dumpstersluts.com/dump/ Claude  >> He already has one! ROTFL

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– Hide quoted text — Show quoted text ->(Drill Sgt. voice) >Well, maggot, since I see yer still awake & posting now, I just >thought you’d like to know that:  not only does Charo run circles >around you on the six string – she looks 10x better than you, too! >And she’s 63!!!!   hahhahahahha >"Put that in yer Bell cell phone & smoke it" >LOL >http://www.imdb.com/name/nm0004819/ > Mulish better not be dissing Charo, that would be a serious escalation. > Charo rocks. Andres Segovia had few bad students. Charo’s not one. > Marc should stick to his kind of woman[1] > http://www.dumpstersluts.com/dump/

Shouldn’t this be under the thread about photos from LV’s shop?

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> (Drill Sgt. voice) > Well, maggot, since I see yer still awake & posting now, I just > thought you’d like to know that:  not only does Charo run circles > around you on the six string – she looks 10x better than you, too! > And she’s 63!!!!   hahhahahahha > "Put that in yer Bell cell phone & smoke it" > LOL > http://www.imdb.com/name/nm0004819/

Ah cuddent figger iote wha M’lay hattent ’sponded to this poast, then ah ‘memberd – last naht ah keel-fahled cox.net. Werks lahk a charm id dus! Jerry

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– Hide quoted text — Show quoted text -> (Drill Sgt. voice) > Well, maggot, since I see yer still awake & posting now, I just > thought you’d like to know that:  not only does Charo run circles > around you on the six string – she looks 10x better than you, too! > And she’s 63!!!!   hahhahahahha > "Put that in yer Bell cell phone & smoke it" > LOL > http://www.imdb.com/name/nm0004819/ > Ah cuddent figger iote wha M’lay hattent ’sponded to this poast, then ah > ‘memberd – last naht ah keel-fahled cox.net. Werks lahk a charm id dus! > Jerry

Wha’d ah tail ya? Jeff

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Shop?! They’re from LV’s recent memory! Seriously, whoever wrote the copy beneath the pics has a GITTERDUNNN!!! sense of humor God, those poor souls… what sad Earth angels. Their very existence provides a platform for >90% of aga typists to feel better about themselves. "The man with no shoes pitied himself until he met the man with no feet". – Hide quoted text — Show quoted text – > http://www.dumpstersluts.com/dump/ > Shouldn’t this be under the thread about photos > from LV’s shop?

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– Hide quoted text — Show quoted text -> > (Drill Sgt. voice) > > Well, maggot, since I see yer still awake & posting now, I just > > thought you’d like to know that:  not only does Charo run circles > > around you on the six string – she looks 10x better than you, too! > > And she’s 63!!!!   hahhahahahha > > "Put that in yer Bell cell phone & smoke it" > > LOL > > http://www.imdb.com/name/nm0004819/ > Ah cuddent figger iote wha M’lay hattent ’sponded to this poast, then ah > ‘memberd – last naht ah keel-fahled cox.net. Werks lahk a charm id dus! > Jerry > Wha’d ah tail ya? > Jeff

Apologies to any legitimate poster on cox…I’ll just call it "justifiable collateral damage". Jerry

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: : > : > > : > > > (Drill Sgt. voice) : > > > : > > > Well, maggot, since I see yer still awake & posting now, I just : > > > thought you’d like to know that:  not only does Charo run circles : > > > around you on the six string – she looks 10x better than you, too! : > > > And she’s 63!!!!   hahhahahahha : > > > "Put that in yer Bell cell phone & smoke it" : > > > : > > > LOL : > > > : > > > http://www.imdb.com/name/nm0004819/ : > > > : > > > : > > Ah cuddent figger iote wha M’lay hattent ’sponded to this poast, then ah : > > ‘memberd – last naht ah keel-fahled cox.net. Werks lahk a charm id dus! : > > : > > Jerry : > > : > Wha’d ah tail ya? : > : > Jeff : : Apologies to any legitimate poster on cox…I’ll just call it "justifiable : collateral damage". : : Jerry  I’m sure they’re all just cryin crocodile tears over the tragic loss of you readin their post. : :

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: (Drill Sgt. voice) : : Well, maggot, since I see yer still awake & posting now, I just : thought you’d like to know that:  not only does Charo run circles : around you on the six string – she looks 10x better than you, too! : And she’s 63!!!!   hahhahahahha : "Put that in yer Bell cell phone & smoke it" : : LOL : : http://www.imdb.com/name/nm0004819/  I’ve seen Charo play,, wasn’t much impressed. If she was a student of segovia, then she musta been the teachers pet or something because she apparently didn’t spend very much time studying the guitar. : :

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@news.datasync.com: – Hide quoted text — Show quoted text – >: (Drill Sgt. voice) >: >: Well, maggot, since I see yer still awake & posting now, I just >: thought you’d like to know that:  not only does Charo run circles >: around you on the six string – she looks 10x better than you, too! >: And she’s 63!!!!   hahhahahahha >: "Put that in yer Bell cell phone & smoke it" >: >: LOL >: >: http://www.imdb.com/name/nm0004819/ >  I’ve seen Charo play,, wasn’t much impressed. > If she was a student of segovia, then she musta been the > teachers pet or something because she apparently > didn’t spend very much time studying the guitar. >: >:

And yet still…. She smokes Mulay.

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– Hide quoted text — Show quoted text ->: (Drill Sgt. voice) >: >: Well, maggot, since I see yer still awake & posting now, I just >: thought you’d like to know that:  not only does Charo run circles >: around you on the six string – she looks 10x better than you, too! >: And she’s 63!!!!   hahhahahahha >: "Put that in yer Bell cell phone & smoke it" >: >: LOL >: >: http://www.imdb.com/name/nm0004819/ >  I’ve seen Charo play,, wasn’t much impressed. > If she was a student of segovia, then she musta been the > teachers pet or something because she apparently > didn’t spend very much time studying the guitar. >: >: >And yet still…. She smokes Mulay.

I’m sure that Charo is crying crocodile tears over the lack of impression she made on a numbnuts like M00re as well. Claude

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Claude, your honesty is must appreciated. I know that wasn’t easy. Thank you. Marc > Look…I picked it up but like most of us I don’t know how to play the guitar solo, much less

 > jam in virtually any style. Moore and Mulay embarassed me too, because  > they posted their playing and all WE do is attempt criticism, yet fear  > is such a core aspect of our exisitence, that fear of peer ridicule,  > even on-line, paralyzes us, so we keep making Charo jokes etc. but NO  > WAY are one of us neoconservative critics going to post our playing.  > Scott posted some nice stuff, but he is not one with LV and US.  > I really am uncomfortable with this now. – Hide quoted text — Show quoted text -> Claude

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Another man finds his soul. Just play a lot fretwire, you’ll be amazed at the improvement! Marc

 > Claude, you’ve got guts man. OK. I see your point.

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This gifted intellectual has sold himself on some sort of aggressive omniscience on his part – Hide quoted text — Show quoted text – > Apologies to any legitimate poster on cox…I’ll just call it "justifiable > collateral damage". > Jerry

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: @news.datasync.com: : : > : >: (Drill Sgt. voice) : >: : >: Well, maggot, since I see yer still awake & posting now, I just : >: thought you’d like to know that:  not only does Charo run circles : >: around you on the six string – she looks 10x better than you, too! : >: And she’s 63!!!!   hahhahahahha : >: "Put that in yer Bell cell phone & smoke it" : >: : >: LOL : >: : >: http://www.imdb.com/name/nm0004819/ : > : > : >  I’ve seen Charo play,, wasn’t much impressed. : > If she was a student of segovia, then she musta been the : > teachers pet or something because she apparently : > didn’t spend very much time studying the guitar. : > : > : >: : >: : > : > : > : : And yet still…. She smokes Mulay.  is that some kind of special bud or something? no wonder she was a bit off

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: > : >> : >>: (Drill Sgt. voice) : >>: : >>: Well, maggot, since I see yer still awake & posting now, I just : >>: thought you’d like to know that:  not only does Charo run circles : >>: around you on the six string – she looks 10x better than you, too! : >>: And she’s 63!!!!   hahhahahahha : >>: "Put that in yer Bell cell phone & smoke it" : >>: : >>: LOL : >>: : >>: http://www.imdb.com/name/nm0004819/ : >> : >> : >>  I’ve seen Charo play,, wasn’t much impressed. : >> If she was a student of segovia, then she musta been the : >> teachers pet or something because she apparently : >> didn’t spend very much time studying the guitar. : >> : >> : >>: : >>: : >> : >> : >> : > : >And yet still…. She smokes Mulay. : : I’m sure that Charo is crying crocodile tears over the : lack of impression she made on a numbnuts like M00re as well. : : Claude   I guess I should expound upon my remarks about Charo a bit, lest it be perceived as negativity.  When I saw her it was on tv about 1 year ago, and she played Maleguena. She knew all of the notes, but the polish was lacking. The timing was a bit slow. So, I was impressed with her musical knowledge, but not much impressed with the delivery.  But hearing that she was a student of segovia makes her performance even less impressive as one would expect a bit more from somoene classically trained.    But then again, she coulda just been out of practice, or maybe  as is the case with me, arthritis is taking it’s toll.  After all, I spoze she is getting on in years.   However, it should be mentioned, that even though I wasn’t much impressed, it doesn’t mean that I view her as having no redeeming value as a human being just because she isn’t ( for whatever reason) *hot* on the guitar.  As for comparing Charo and Marc, it’s kind like comparing your head and your ass. The only thing they have in common is, they both occupy the same space.  So Clod, How about you post some of your guitar work, and we’ll see how *you* *measure up* against Charo ?  I’ll even give you a username and password if you want to post it at  soundergy.com

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Hey, thanks for all your responses.  I’ve decided to do the mtx, haven’t started yet though

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Good luck Donna!  Please let us know how the treatment goes for you.  mgbio – Hide quoted text — Show quoted text – > Hey, thanks for all your responses.  I’ve decided to do the mtx, haven’t > started yet though

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  donna~  glad to hear you felt informed enuf to decide to try the mtx.. i am hoping with you it works well & you are feeling better. be patient,it may take awhile  take care  carol

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I was on mtx for 4-5 weeks by weekly injection.  Then my liver tests came back abnormal and a liver biopsy  came baack and it was definetly abnormal so my GI had to stop it.  Yhey started it in the hospital and the pharmacy would prepare the syringes down stairs and then send them up to the ward, one at a time in yellow bucket with huge biohazard symbols on them. I hope that you have good luck with it, my mtx experience was in the pre-remicade era, which I have yet to try. Good luck may you find the magic potion that works – Paul – Hide quoted text — Show quoted text – > Hi Rebecca, > I definitely have to keep something in my stomach, otherwise it is > worse! It can be hard to make yourself eat when your stomach doesn’t > feel good, but I force myself because I know it will help. I must > admit I have been feeling better this week since I reduced my dose to > 15mg. > I hadn’t noticed feeling better by resting, although I have been off > work and taking it easy since March anyway! I suppose a low-level > seasickness is a good way to describe how my tummy feels. I was > actually going to try taking some ginger travel sickness tablets I > have in the cupboard instead of something like maxolon, but haven’t > needed to. > Take care, > Amy. > I told the doc my nausea feels more like being seasick — if I sit > down or > rest, I feel better. I also feel better right after I eat, which is NOT > helping my diet. . . . > Does that sound like what you get? > Rebecca

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Hi Rebecca, I definitely have to keep something in my stomach, otherwise it is worse! It can be hard to make yourself eat when your stomach doesn’t feel good, but I force myself because I know it will help. I must admit I have been feeling better this week since I reduced my dose to 15mg. I hadn’t noticed feeling better by resting, although I have been off work and taking it easy since March anyway! I suppose a low-level seasickness is a good way to describe how my tummy feels. I was actually going to try taking some ginger travel sickness tablets I have in the cupboard instead of something like maxolon, but haven’t needed to. Take care, Amy. – Hide quoted text — Show quoted text – > I told the doc my nausea feels more like being seasick — if I sit down or > rest, I feel better. I also feel better right after I eat, which is NOT > helping my diet. . . . > Does that sound like what you get? > Rebecca

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 btw my GI explained to me that the pill was a good match for me because my crohns is in the rectum and doesn’t really effect the absorbtion of the metx. for people with poor absorbtion the shot may be better because it is supposed to go directly to the blood stream and also have less side affects (?)  theory anyway. side effects can be: drowziness,dizziness,nausea, stomach pain,   the more serious ones are mouth sores, diarrhea,fever, fatigue,unusual bleeding, (so far sounds like a fairly accurate description of CD  )  bruising, persistant sore throat,enlarged glands/lymph nodes,chest pain,dry cough, trouble breathing, calf pain/swelling, vision changes, irregular heartbeat,,unusual bone pain, muscle weakness,mental/mood swings, seizures,temporary hair loss.    i have noticed a change of mood ,more irritable now when in pain.and even less hair than the already new and improved (??) trimmer version of hair.  also supposed to drink lots of water, and be careful of the sun.  and never drink when facing south on tuesdays… are you still with me?     carol  thanks Mary!

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I told the doc my nausea feels more like being seasick — if I sit down or rest, I feel better. I also feel better right after I eat, which is NOT helping my diet. . . . Does that sound like what you get? Rebecca

– Hide quoted text — Show quoted text -> Hi Donna, > I have been on mtx since late December, and I feel like it is helping > which is pretty miraculous for me as I tend to not respond well to > medication. I have been injecting 20mg every week, but last time reduced > it to 15mg because I was worried it might have been contributing to me > feeling unwell (abdo pain/nausea). I started off just having a funny > feeling in my tummy for an hour or two on the night of the injection, > but more recently have been feeling queasy (but not to the stage of > feeling like I was going to vomit). I also feel very tired the night of > the injection. As a definite positive, it cleared up my arthritis really > well > Good luck with your decision! > Amy. > Hey everyone, > Haven’t been around lately..but I need your help with a > decision I have to make.  Things are still not better with > me (been 7 months now).  Doc gave me a choice between mtx > and remi.  I am leaning towards mtx first, but not sure. > Can you guys share your success and horror stories about > mtx???  I would really really appreciate it.  Thanks > Donna

Response:

Just wondering…people in general feel as though mtx is a very harsh drug..what is it that makes it more toxic than any other drug out there.  They all have their side effects Am I missing something about the mtx..why are people so scared of it?  

Response:

I thought mtx was a infusion like remicade but sounds like it is a pill???? Hope it continues to work for you Carol and Rebecca without the side effects. Mary

– Hide quoted text — Show quoted text -> I’m on my 6th week of mtx right now — I’ve had a lot of trouble with nausea > for a few days after I take it, but by the end of the week (I take it on > Sundays) I feel really good. All of my joint pain is completely gone, and my > gut pain is significantly better. I am, however, really, really tired for > about 36 hours after I take it. So, I’m good half the week and bad half the > week. I’m still trying to decide if it is worth it. I do love being able to > sew and type again as I was having a lot of pain in my joints. > Good luck and let us know what you decide to do. > Rebecca > Hey everyone, > Haven’t been around lately..but I need your help with a > decision I have to make.  Things are still not better with > me (been 7 months now).  Doc gave me a choice between mtx > and remi.  I am leaning towards mtx first, but not sure. > Can you guys share your success and horror stories about > mtx???  I would really really appreciate it.  Thanks > Donna

Response:

You can take it either in pill form or as an injection. I’m on the pills. Thanks for the good thoughts. Rebecca

– Hide quoted text — Show quoted text -> I thought mtx was a infusion like remicade but sounds like it is a pill???? > Hope it continues to work for you Carol and Rebecca without the side > effects. > Mary > I’m on my 6th week of mtx right now — I’ve had a lot of trouble with > nausea > for a few days after I take it, but by the end of the week (I take it on > Sundays) I feel really good. All of my joint pain is completely gone, and > my > gut pain is significantly better. I am, however, really, really tired for > about 36 hours after I take it. So, I’m good half the week and bad half > the > week. I’m still trying to decide if it is worth it. I do love being able > to > sew and type again as I was having a lot of pain in my joints. > Good luck and let us know what you decide to do. > Rebecca > > Hey everyone, > > Haven’t been around lately..but I need your help with a > > decision I have to make.  Things are still not better with > > me (been 7 months now).  Doc gave me a choice between mtx > > and remi.  I am leaning towards mtx first, but not sure. > > Can you guys share your success and horror stories about > > mtx???  I would really really appreciate it.  Thanks > > Donna

Response:

Hi Donna, I have been on mtx since late December, and I feel like it is helping which is pretty miraculous for me as I tend to not respond well to medication. I have been injecting 20mg every week, but last time reduced it to 15mg because I was worried it might have been contributing to me feeling unwell (abdo pain/nausea). I started off just having a funny feeling in my tummy for an hour or two on the night of the injection, but more recently have been feeling queasy (but not to the stage of feeling like I was going to vomit). I also feel very tired the night of the injection. As a definite positive, it cleared up my arthritis really well Good luck with your decision! Amy. – Hide quoted text — Show quoted text – > Hey everyone, > Haven’t been around lately..but I need your help with a > decision I have to make.  Things are still not better with > me (been 7 months now).  Doc gave me a choice between mtx > and remi.  I am leaning towards mtx first, but not sure. > Can you guys share your success and horror stories about > mtx???  I would really really appreciate it.  Thanks > Donna

Response:

Hey everyone, Haven’t been around lately..but I need your help with a decision I have to make.  Things are still not better with me (been 7 months now).  Doc gave me a choice between mtx and remi.  I am leaning towards mtx first, but not sure. Can you guys share your success and horror stories about mtx???  I would really really appreciate it.  Thanks Donna

Response:

Been on remicade several months now and so far so good.  GI just added Entocort to the mix for a couple of months.  My Internist said I was on the strongest drug out there for Crohns. Mary

– Hide quoted text — Show quoted text -> Hey everyone, > Haven’t been around lately..but I need your help with a > decision I have to make.  Things are still not better with > me (been 7 months now).  Doc gave me a choice between mtx > and remi.  I am leaning towards mtx first, but not sure. > Can you guys share your success and horror stories about > mtx???  I would really really appreciate it.  Thanks > Donna

Response:

 donna~   i am now on my 5th week of mtx. i take it orally. for me i am still waiting for clear results.  i had one week that really was an improvement til PMS hit. pain for me is the worst symtom for me by far.  so i am hoping still for it to kick in & work for me. my dr. is going to start the remicade process going for insurance coverage very soon. in case this doesn’t work so i won’t have to wait for longer period to begin  the remicade.  i get very tired and need more sleep for at least one day after taking it. i am talking need to sleep like can bearly move i am so wiped out.  even that isn’t so pronounced for me now. last dose just needed 1 extra nap.  sorry to hear of your flare lasting so long.  take good care  carol

Response:

I’m on my 6th week of mtx right now — I’ve had a lot of trouble with nausea for a few days after I take it, but by the end of the week (I take it on Sundays) I feel really good. All of my joint pain is completely gone, and my gut pain is significantly better. I am, however, really, really tired for about 36 hours after I take it. So, I’m good half the week and bad half the week. I’m still trying to decide if it is worth it. I do love being able to sew and type again as I was having a lot of pain in my joints. Good luck and let us know what you decide to do. Rebecca

– Hide quoted text — Show quoted text -> Hey everyone, > Haven’t been around lately..but I need your help with a > decision I have to make.  Things are still not better with > me (been 7 months now).  Doc gave me a choice between mtx > and remi.  I am leaning towards mtx first, but not sure. > Can you guys share your success and horror stories about > mtx???  I would really really appreciate it.  Thanks > Donna

Response:

none  (just improvement in sx’s). jeff

– Hide quoted text — Show quoted text -> WHAT ARE THE WITHDRAWAL SYMPTOMS OF DECREASING THE USE OF THE STEROID > PREDNISONE? >  Via: Rosette Gazette, Owensboro, KY Ostomy Chapter >  Prednisone is a synthetic hormone. It belongs to a class of drugs called > corticosteroids. Prednisone reduces inflammation but also decreases your > body’s ability to fight infections. It’s used to treat many conditions, such > as severe allergies, asthma, lupus and arthritis. When you take prednisone, > your adrenal glands stop making cortisone like hormones (glucocorticoids). > After you stop taking steroids, your adrenal glands need time to resume this > function. The amount of time your adrenal glands need to fully recover > depends on how long you took steroids and how much you took. Your doctor > typically reduces your dosage of steroids gradually over several weeks or > months. One potential consequence of steroid withdrawal, is a flare-up of > the problem you were treating with the steroids. For example, people with > rheumatoid arthritis may have a recurrence of joint pain after they stop > taking steroids. By slowly reducing the dose of prednisone, any worsening of > the disease will be mild. Also, your doctor can adjust the rate of dose > reduction. If the dose is reduced too fast, you may have fatigue, body > aches, lightheadedness and difficulty recovering from minor illnesses. The > greatest risk to your health during steroid withdrawal is the inability of > your adrenal glands to respond to acute physical stress, such as serious > injury, surgery or general anesthesia. Normally in these situations, your > adrenal glands release large amounts of cortisol to help your body cope with > the acute stress. If the adrenal glands are impaired, the lack of needed > extra cortisol can cause shock and even death. For this reason, be sure to > tell medical personnel if you currently take or have taken within the last > year, prednisone or cortisol-like steroids. > L Trapp – Webmaster / Evansville Ostomy Chapter / > http://www.ostomy.evansville.net

Response:

WHAT ARE THE WITHDRAWAL SYMPTOMS OF DECREASING THE USE OF THE STEROID PREDNISONE?  Via: Rosette Gazette, Owensboro, KY Ostomy Chapter  Prednisone is a synthetic hormone. It belongs to a class of drugs called corticosteroids. Prednisone reduces inflammation but also decreases your body’s ability to fight infections. It’s used to treat many conditions, such as severe allergies, asthma, lupus and arthritis. When you take prednisone, your adrenal glands stop making cortisone like hormones (glucocorticoids). After you stop taking steroids, your adrenal glands need time to resume this function. The amount of time your adrenal glands need to fully recover depends on how long you took steroids and how much you took. Your doctor typically reduces your dosage of steroids gradually over several weeks or months. One potential consequence of steroid withdrawal, is a flare-up of the problem you were treating with the steroids. For example, people with rheumatoid arthritis may have a recurrence of joint pain after they stop taking steroids. By slowly reducing the dose of prednisone, any worsening of the disease will be mild. Also, your doctor can adjust the rate of dose reduction. If the dose is reduced too fast, you may have fatigue, body aches, lightheadedness and difficulty recovering from minor illnesses. The greatest risk to your health during steroid withdrawal is the inability of your adrenal glands to respond to acute physical stress, such as serious injury, surgery or general anesthesia. Normally in these situations, your adrenal glands release large amounts of cortisol to help your body cope with the acute stress. If the adrenal glands are impaired, the lack of needed extra cortisol can cause shock and even death. For this reason, be sure to tell medical personnel if you currently take or have taken within the last year, prednisone or cortisol-like steroids. L Trapp – Webmaster / Evansville Ostomy Chapter / http://www.ostomy.evansville.net

Response:

that is a myth.  mtx can be injected using insulin needles.  injecting in the muscle is not necessary. jeff – Hide quoted text — Show quoted text -> Greetings, Amy…I just read this thread from Google and thought > that I’d jump in with my opinion, as I’ve been on MTX for almost > 10 years, and have had to learn a lot about it, Remicade, and > many other drugs I take. > I’d recheck with your doctor about how you’re administering your > MTX, as this is the info I have…MTX is available as pills or as > an injectable. I couldn’t continue on the pills, due to > unacceptable side effects…many people report this and change > over to the injections. I’m taken care of by the VA Hospital in > Houston, which is now part of the Texas Medical Center and has > what are considered the finest Rheumatologists in the nation. As > you might imagine, with the large patient population of older > veterans, there is a huge and well-experienced Rheumatology > department. I’m also seen by private doctors and specialists > under Medicare. > To make a very long story shorter, when I first went on MTX, I > went down to the VA every Friday morning for routine labs, which > are mandatory when on MTX. Went to lunch, and if labs were okay, > then Pharmacy mixed MTX to order and delivered filled syringe to > nurses who then injected the MTX IM, (Intra-muscular) into a > buttock. We changed "cheeks" each week. They didn’t take any > special handling precautions with the MTX, other than the normal > stuff for injections. They do about a hundred of these a day. We > went through this routine for 2 years while establishing a > response and side-effect profile. > I then signed-up for home self-injecting, and they now send me > the standard manufacturer’s vials of MTX, 3ml BD syringes, and > needles. I went through a long series of discussions with the VA > Rheumatologists, nurses who specialize in injections, the Head of > Pharmacy at the Hospital, and my private doctors, along with > consulting the Monograph, (complete directions) that come with > the drug, and the manufacturer’s web site. > All of these sources advise that using a insulin needle and > injecting sub-q, ( just under the skin ), IS NOT CORRECT, and the > medication will either not be effective, or be overly reactive. > MTX is designed to be injected deep into a muscle, either a > buttock, or upper thigh. As I’m alone, I use the top of an upper > thigh, alternating each week. I inject 15mg with a 3ml BD > syringe, and a 27GA 1 1/4" needle. The needle must be at least 1 > 1/4" to get into the muscle. If you check the PDR, the > manufacturer’s web site, and the monograph enclosed with each > vial, you’ll see that IM injection is the only recommended route, > and sub-q is not mentioned. I’ve seen references to sub-q use of > MTX on several newsgroups, and have again asked the doctors and > nurses who KNOW about this, and they still advise that sub-q use > of MTX is wrong…it must be injected intra-muscularly. > As for the rest of your message, MTX is not dangerous, nor does > it require special handling or refrigeration. I get the standard > vial, syringe and needles from the VA shipped to me and I simply > keep the MTX vials beside the bed. Each week I take one needle > and pull the correct amount of MTX, then change to a new > needle…swab the site with alcohol wipe, let dry, jab straight > down, pull back slightly to make sure I’m not in a vein, then > inject slowly into the muscle. Wait for a few seconds, pull > needle out, then swab again. Check for bleeding at site, go on > about my business. Toss used syringe and needle, MTX vial goes > back on bedstand for next week. The bottle is sealed with a > rubber stopper and they recommend you swab the top of it with the > alcohol wipe after use, but that’s it. They simply do pre-mixes > at the Hospital because they do so many every day and want to > eliminate nurse error or liability in drawing the right dose for > each patient. I do get blood work done each month to monitor CBC, > Differential, Platelets, Liver and Kidney function. > Again, I’d check with my doctor or get another opinion. I’d be > happy to answer any questions that I can. > — > Regards, Jim > ALL POSTS SENT HAVE BEEN SCANNED! > I found out something interesting today – the way I have been > preparing > and injecting myself with methotrexate is considered dangerous! > Apparently the safe way is to have the pharmacy prepare the mtx > by > preloading the correct dose in syringes which you then keep in > the > fridge. They use a fume cupboard etc. But I was taught to just > get the > 50mg vials from the chemist, fill the syringe myself using the > appropriate amount (20mg in my case), then place the leftovers > in the > sharps container. But apparently because it is cytotoxic, this > can be > dangerous to myself and others if spillage occurs or if it is > breathed > in. I wasn’t even told to use gloves. > Am I the only one to be using these so-called unsafe practices, > or is it > standard procedure? > Take care, > Amy.

Response:

Thanks Dwight, I tend to agree – I do use a vial with a rubber stopper, clean the site, use a new syringe etc, so I think it sounds safe enough. I went and got my first pharmacist-prepared mtx, which is sealed in a syringe which I attach a needle too and inject. It doesn’t seem to be much different to what I do already. Plus it costs $25.80 for 3 weeks, versus $3.80 for 5 weeks using the vials – may not sound like a lot but when you are not working every little bit makes a difference. And it costs $2 for parking to pick up the mtx from the hospital. So I think next time I will bypass the whole strict hospital rules and just get my GP to write me a prescription I can get myself as I have been doing since December. Thanks for your response too Jeff. Take care, Amy. – Hide quoted text — Show quoted text – > Let me state that I’m not a doctor and not that familiar with mtx, but I > do have experience with self-injections.  If you’re using a vial and not > having to mix it yourself, I can’t imagine it being dangerous.  You’re > using a vial on a one-time basis, using a new syringe everytime, and > cleaning the injection site, there shouldn’t be anything to worry about. >  The vial should be sealed and spill-proof with the rubber stopper in it > and it shouldn’t allow any fumes to escape.  I’m a diabetic and I’ve > also got hep-c which I’m currently going through treatment for.  I give > myself four injections a day of insulin, two shots a week of Neupogen, > one shot of Procrit a week, and one shot of interferon a week.  I can’t > imagine going to the doctor for any of my injections anymore.  I used to > be one of the biggest babies in the world when it came to injections, it > was so bad I had trouble not passing out when the nurse had to give me a > shot.  Now I would rather do it myself. > Dwight

(The Human Pin Cushion) – Hide quoted text — Show quoted text –

Response:

I did interferon too, 5 million units daily for 56 weeks (I HBV besided cronh’s).  Hope your INF is showing progress with your HCV. brian

– Hide quoted text — Show quoted text -> Thanks Dwight, I tend to agree – I do use a vial with a rubber stopper, > clean the site, use a new syringe etc, so I think it sounds safe enough. I > went and got my first pharmacist-prepared mtx, which is sealed in a > syringe which I attach a needle too and inject. It doesn’t seem to be much > different to what I do already. Plus it costs $25.80 for 3 weeks, versus > $3.80 for 5 weeks using the vials – may not sound like a lot but when you > are not working every little bit makes a difference. And it costs $2 for > parking to pick up the mtx from the hospital. > So I think next time I will bypass the whole strict hospital rules and > just get my GP to write me a prescription I can get myself as I have been > doing since December. > Thanks for your response too Jeff. > Take care, > Amy. > Let me state that I’m not a doctor and not that familiar with mtx, but I > do have experience with self-injections.  If you’re using a vial and not > having to mix it yourself, I can’t imagine it being dangerous.  You’re > using a vial on a one-time basis, using a new syringe everytime, and > cleaning the injection site, there shouldn’t be anything to worry about. > The vial should be sealed and spill-proof with the rubber stopper in it > and it shouldn’t allow any fumes to escape.  I’m a diabetic and I’ve also > got hep-c which I’m currently going through treatment for.  I give myself > four injections a day of insulin, two shots a week of Neupogen, one shot > of Procrit a week, and one shot of interferon a week.  I can’t imagine > going to the doctor for any of my injections anymore.  I used to be one > of the biggest babies in the world when it came to injections, it was so > bad I had trouble not passing out when the nurse had to give me a shot. > Now I would rather do it myself. > Dwight > (The Human Pin Cushion)

Response:

For the difference in price, I would get the vials too. Dwight – Hide quoted text — Show quoted text – > Thanks Dwight, I tend to agree – I do use a vial with a rubber stopper, > clean the site, use a new syringe etc, so I think it sounds safe enough. > I went and got my first pharmacist-prepared mtx, which is sealed in a > syringe which I attach a needle too and inject. It doesn’t seem to be > much different to what I do already. Plus it costs $25.80 for 3 weeks, > versus $3.80 for 5 weeks using the vials – may not sound like a lot but > when you are not working every little bit makes a difference. And it > costs $2 for parking to pick up the mtx from the hospital. > So I think next time I will bypass the whole strict hospital rules and > just get my GP to write me a prescription I can get myself as I have > been doing since December. > Thanks for your response too Jeff. > Take care, > Amy. > Let me state that I’m not a doctor and not that familiar with mtx, but > I do have experience with self-injections.  If you’re using a vial and > not having to mix it yourself, I can’t imagine it being dangerous.   > You’re using a vial on a one-time basis, using a new syringe > everytime, and cleaning the injection site, there shouldn’t be > anything to worry about.  The vial should be sealed and spill-proof > with the rubber stopper in it and it shouldn’t allow any fumes to > escape.  I’m a diabetic and I’ve also got hep-c which I’m currently > going through treatment for.  I give myself four injections a day of > insulin, two shots a week of Neupogen, one shot of Procrit a week, and > one shot of interferon a week.  I can’t imagine going to the doctor > for any of my injections anymore.  I used to be one of the biggest > babies in the world when it came to injections, it was so bad I had > trouble not passing out when the nurse had to give me a shot.  Now I > would rather do it myself. > Dwight > (The Human Pin Cushion)

–

Response:

Greetings, Amy…I just read this thread from Google and thought that I’d jump in with my opinion, as I’ve been on MTX for almost 10 years, and have had to learn a lot about it, Remicade, and many other drugs I take. I’d recheck with your doctor about how you’re administering your MTX, as this is the info I have…MTX is available as pills or as an injectable. I couldn’t continue on the pills, due to unacceptable side effects…many people report this and change over to the injections. I’m taken care of by the VA Hospital in Houston, which is now part of the Texas Medical Center and has what are considered the finest Rheumatologists in the nation. As you might imagine, with the large patient population of older veterans, there is a huge and well-experienced Rheumatology department. I’m also seen by private doctors and specialists under Medicare. To make a very long story shorter, when I first went on MTX, I went down to the VA every Friday morning for routine labs, which are mandatory when on MTX. Went to lunch, and if labs were okay, then Pharmacy mixed MTX to order and delivered filled syringe to nurses who then injected the MTX IM, (Intra-muscular) into a buttock. We changed "cheeks" each week. They didn’t take any special handling precautions with the MTX, other than the normal stuff for injections. They do about a hundred of these a day. We went through this routine for 2 years while establishing a response and side-effect profile. I then signed-up for home self-injecting, and they now send me the standard manufacturer’s vials of MTX, 3ml BD syringes, and needles. I went through a long series of discussions with the VA Rheumatologists, nurses who specialize in injections, the Head of Pharmacy at the Hospital, and my private doctors, along with consulting the Monograph, (complete directions) that come with the drug, and the manufacturer’s web site. All of these sources advise that using a insulin needle and injecting sub-q, ( just under the skin ), IS NOT CORRECT, and the medication will either not be effective, or be overly reactive. MTX is designed to be injected deep into a muscle, either a buttock, or upper thigh. As I’m alone, I use the top of an upper thigh, alternating each week. I inject 15mg with a 3ml BD syringe, and a 27GA 1 1/4" needle. The needle must be at least 1 1/4" to get into the muscle. If you check the PDR, the manufacturer’s web site, and the monograph enclosed with each vial, you’ll see that IM injection is the only recommended route, and sub-q is not mentioned. I’ve seen references to sub-q use of MTX on several newsgroups, and have again asked the doctors and nurses who KNOW about this, and they still advise that sub-q use of MTX is wrong…it must be injected intra-muscularly. As for the rest of your message, MTX is not dangerous, nor does it require special handling or refrigeration. I get the standard vial, syringe and needles from the VA shipped to me and I simply keep the MTX vials beside the bed. Each week I take one needle and pull the correct amount of MTX, then change to a new needle…swab the site with alcohol wipe, let dry, jab straight down, pull back slightly to make sure I’m not in a vein, then inject slowly into the muscle. Wait for a few seconds, pull needle out, then swab again. Check for bleeding at site, go on about my business. Toss used syringe and needle, MTX vial goes back on bedstand for next week. The bottle is sealed with a rubber stopper and they recommend you swab the top of it with the alcohol wipe after use, but that’s it. They simply do pre-mixes at the Hospital because they do so many every day and want to eliminate nurse error or liability in drawing the right dose for each patient. I do get blood work done each month to monitor CBC, Differential, Platelets, Liver and Kidney function. Again, I’d check with my doctor or get another opinion. I’d be happy to answer any questions that I can. — Regards, Jim ALL POSTS SENT HAVE BEEN SCANNED!

– Hide quoted text — Show quoted text -> I found out something interesting today – the way I have been preparing > and injecting myself with methotrexate is considered dangerous! > Apparently the safe way is to have the pharmacy prepare the mtx by > preloading the correct dose in syringes which you then keep in the > fridge. They use a fume cupboard etc. But I was taught to just get the > 50mg vials from the chemist, fill the syringe myself using the > appropriate amount (20mg in my case), then place the leftovers in the > sharps container. But apparently because it is cytotoxic, this can be > dangerous to myself and others if spillage occurs or if it is breathed > in. I wasn’t even told to use gloves. > Am I the only one to be using these so-called unsafe practices, or is it > standard procedure? > Take care, > Amy.

Response:

right on!!!!! jeff

– Hide quoted text — Show quoted text -> Let me state that I’m not a doctor and not that familiar with mtx, but I > do have experience with self-injections.  If you’re using a vial and not > having to mix it yourself, I can’t imagine it being dangerous.  You’re > using a vial on a one-time basis, using a new syringe everytime, and > cleaning the injection site, there shouldn’t be anything to worry about. >   The vial should be sealed and spill-proof with the rubber stopper in > it and it shouldn’t allow any fumes to escape.  I’m a diabetic and I’ve > also got hep-c which I’m currently going through treatment for.  I give > myself four injections a day of insulin, two shots a week of Neupogen, > one shot of Procrit a week, and one shot of interferon a week.  I can’t > imagine going to the doctor for any of my injections anymore.  I used to > be one of the biggest babies in the world when it came to injections, it > was so bad I had trouble not passing out when the nurse had to give me a > shot.  Now I would rather do it myself. > Dwight > (The Human Pin Cushion) > I found out something interesting today – the way I have been preparing > and injecting myself with methotrexate is considered dangerous! > Apparently the safe way is to have the pharmacy prepare the mtx by > preloading the correct dose in syringes which you then keep in the > fridge. They use a fume cupboard etc. But I was taught to just get the > 50mg vials from the chemist, fill the syringe myself using the > appropriate amount (20mg in my case), then place the leftovers in the > sharps container. But apparently because it is cytotoxic, this can be > dangerous to myself and others if spillage occurs or if it is breathed > in. I wasn’t even told to use gloves. > Am I the only one to be using these so-called unsafe practices, or is it > standard procedure? > Take care, > Amy. > —

Response:

Hi amy, Thanks for the information. It was very helpful. Wow! I am amazed at all the meds that you are on. You must have been pretty sick. All the best to you, and Thanks Nyse

Response:

i think that is overkill.  but to each their own.  i know a healthy person should not have skin contact, but for cripes sake, we are injecting the dang stuff!!!  i guess some people could have an inverse reaction to the stuff. mtx is wicked, but i doubt that a few molecules we are talking about that get air borne will hurt anyone any  worse than second hand smoke.  not a chemist or pharmacist here, but i do know what a molecule is.

– Hide quoted text — Show quoted text -> I found out something interesting today – the way I have been preparing > and injecting myself with methotrexate is considered dangerous! > Apparently the safe way is to have the pharmacy prepare the mtx by > preloading the correct dose in syringes which you then keep in the > fridge. They use a fume cupboard etc. But I was taught to just get the > 50mg vials from the chemist, fill the syringe myself using the > appropriate amount (20mg in my case), then place the leftovers in the > sharps container. But apparently because it is cytotoxic, this can be > dangerous to myself and others if spillage occurs or if it is breathed > in. I wasn’t even told to use gloves. > Am I the only one to be using these so-called unsafe practices, or is it > standard procedure? > Take care, > Amy.

Response:

Let me state that I’m not a doctor and not that familiar with mtx, but I do have experience with self-injections.  If you’re using a vial and not having to mix it yourself, I can’t imagine it being dangerous.  You’re using a vial on a one-time basis, using a new syringe everytime, and cleaning the injection site, there shouldn’t be anything to worry about.   The vial should be sealed and spill-proof with the rubber stopper in it and it shouldn’t allow any fumes to escape.  I’m a diabetic and I’ve also got hep-c which I’m currently going through treatment for.  I give myself four injections a day of insulin, two shots a week of Neupogen, one shot of Procrit a week, and one shot of interferon a week.  I can’t imagine going to the doctor for any of my injections anymore.  I used to be one of the biggest babies in the world when it came to injections, it was so bad I had trouble not passing out when the nurse had to give me a shot.  Now I would rather do it myself. Dwight (The Human Pin Cushion) – Hide quoted text — Show quoted text – > I found out something interesting today – the way I have been preparing > and injecting myself with methotrexate is considered dangerous! > Apparently the safe way is to have the pharmacy prepare the mtx by > preloading the correct dose in syringes which you then keep in the > fridge. They use a fume cupboard etc. But I was taught to just get the > 50mg vials from the chemist, fill the syringe myself using the > appropriate amount (20mg in my case), then place the leftovers in the > sharps container. But apparently because it is cytotoxic, this can be > dangerous to myself and others if spillage occurs or if it is breathed > in. I wasn’t even told to use gloves. > Am I the only one to be using these so-called unsafe practices, or is it > standard procedure? > Take care, > Amy.

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Response:

Hi Amy, I was just talking to my Gastro. he is going to put me on Methotrexate, as I had bad reaction to Immuran. I will not be injecting the medication myself, he said my family doctor has to do it. I really can’t believe that you have to inject it yourself. I was also woundering if you could give me some info about methotrexate, does it help you? all I know is that i have to get a weekly injection.

Response:

nyse, The injection is just under the skin (into the stomach or thigh), using an insulin needle which is fine and short, so it is not painful at all. It really isn’t that hard to administer, it’s the same thing that diabetics do every day. It is a bit scary doing it at first though! I would be quite happy to have my doctor do it every week, but I felt I was expected to cope doing it myself, which I am doing but I don’t enjoy it. I noticed that on the night of my injection, my stomach would feel a bit funny, but this has stopped happening now. It could have been the mtx or it could have been the folic acid pill I take on the same day. But that is the only side effect I have noticed, apart from perhaps a bit of extra tiredness on the night of the injection. You need to get your blood tests done regularly, just like you do with Imuran. I have distal UC which is pretty much resistant to most medication, but I do feel as if it has helped a bit (I have been on it since December). It certainly helped my arthritis which seems to have cleared up completely. I also take Salofalk granules, have been on pred since last May (am down to 4mg at the moment), use colifoam twice a day, and had a remicade infusion a few weeks ago. I was on Imuran for more than 2 years and that didn’t seem to help me at all. I hope you get good results with the methotrexate! Take care, Amy. – Hide quoted text — Show quoted text – > Hi Amy, > I was just talking to my Gastro. he is going to put me on Methotrexate, as > I had bad reaction to Immuran. I will not be injecting the medication > myself, he said my family doctor has to do it. I really can’t believe that > you have to inject it yourself. I was also woundering if you could give me > some info about methotrexate, does it help you? all I know is that i have > to get a weekly injection.

Response:

I found out something interesting today – the way I have been preparing and injecting myself with methotrexate is considered dangerous! Apparently the safe way is to have the pharmacy prepare the mtx by preloading the correct dose in syringes which you then keep in the fridge. They use a fume cupboard etc. But I was taught to just get the 50mg vials from the chemist, fill the syringe myself using the appropriate amount (20mg in my case), then place the leftovers in the sharps container. But apparently because it is cytotoxic, this can be dangerous to myself and others if spillage occurs or if it is breathed in. I wasn’t even told to use gloves. Am I the only one to be using these so-called unsafe practices, or is it standard procedure? Take care, Amy.

Response: