No more Remicade for Ichy
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This last infusion lasted two weeks. In a major flare now. Started pred again and am going back to Arava/Mtx for now, doc wants to try enbrel when/if it ever becomes available again. Very strange. It feels like turning a light switch on and off. I felt great, then within a hour I had joints swell up and trun red. Plus it was 10 times worse then ever before, sort of like the remicade saved up the TNF and released it all at once. Bummer eh! On another subject, any folder’s out there get a rather large work only 75% complete. They better be giving lots of points for this one. — Dan Help Find a Cure http://www.bensonpolymeric.com/folding/start.html
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you. It is kind of a rare reaction as it happened to you. I would have to find out of the medicine you took was mishandled in some way or not giving to you in the right way(whatever that is). Talk to your doctor about having one more infusion at a later date. Sure,,,go with the Methx/Arava and continue it even with the next infusion. Ahhh well,,what do I know. I just think you need another chance with the Remy. Harv – Hide quoted text — Show quoted text – > This last infusion lasted two weeks. In a major flare now. Started > pred again and am going back to Arava/Mtx for now, doc wants to try > enbrel when/if it ever becomes available again. > Very strange. It feels like turning a light switch on and off. I felt > great, then within a hour I had joints swell up and trun red. Plus it > was 10 times worse then ever before, sort of like the remicade saved up > the TNF and released it all at once. > Bummer eh! > On another subject, any folder’s out there get a rather large work > only 75% complete. They better be giving lots of points for this one. > — > Dan > Help Find a Cure > http://www.bensonpolymeric.com/folding/start.html
– -Harv To reply to this message via email, please remove "_no_spam_" from my email address.
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This has happened for the last three infusions Harv. The one before last was 6 weeks and before that 2 weeks (feeling good). Each time the dosage was increased, but the results are the same. I feel like a real human for awhile then crash! I can function pretty well on the Arava but was hoping that this would set me over the edge so-to-speak, without having to take drugs every day. I never took the benedriil (sp?) either as had no adverse reactions to the infusion. – Hide quoted text — Show quoted text – > It is kind of a rare reaction as it happened to you. I would have to > find out of the medicine you took was mishandled in some way or not > giving to you in the right way(whatever that is). Talk to your doctor > about having > one more infusion at a later date.
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>The one before last was >6 weeks and before that 2 weeks (feeling good). Each time the dosage was >increased, but the results are the same. I feel like a real human for awhile
me too, me too. i don’t understand it, really. i am on a pretty high dose of remi, but it’s the same each time. i will flare for at least part of the time, although i can’t really say it’s at a certain time between doses. i sure don’t want to give it up, but i still know i have RA and can feel it gradually progressing. :-( diane
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That sucks!!!! ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s Togs http://tinastogs.com Quality Plus Size and Vintage Fashions Coming soon to a puter near you!
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Hi Dan, Sorry to hear the remicade didn’t work for you. Hope the doc can find something that does. moved me from 9th place to 6th place. 
I must have gotten lots of extra points because I even passed DI who has 176 units & I only have 143. http://folding.stanford.edu/cgi-bin/teampage.detailed?q=7 I’m right behind you for now. GramPaHugs, Alex, – Hide quoted text — Show quoted text – > This last infusion lasted two weeks. In a major flare now. Started > pred again and am going back to Arava/Mtx for now, doc wants to try > enbrel when/if it ever becomes available again. > Very strange. It feels like turning a light switch on and off. I felt > great, then within a hour I had joints swell up and trun red. Plus it > was 10 times worse then ever before, sort of like the remicade saved up > the TNF and released it all at once. > Bummer eh! > On another subject, any folder’s out there get a rather large work > only 75% complete. They better be giving lots of points for this one. > — > Dan > Help Find a Cure > http://www.bensonpolymeric.com/folding/start.html
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Hope they can find you something that works miracles for you real soon!!! Donna G
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>Is approved for PA? Prob not. We are at the bottom of the list you know. >The >people in the shadows. The unwashed!
Yeah, but you have good friends there with you. Me among them. Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
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> Is approved for PA? Prob not. We are at the bottom of the list you know. The > people in the shadows. The unwashed!
I’ve always thought of us people with AS and/or PA as the ugly stepchildren. And I’m probably one of the ugliest since I live in Sweden and we get all meds about 6 months after they are released in the US. Well, guess the Brits are much worse off, though. Nina
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that’s a bummer, dan. ((((((hugs))))) here’s hoping your doc find the magic elixir for you soon. kate
– Hide quoted text — Show quoted text -> This last infusion lasted two weeks. In a major flare now. Started > pred again and am going back to Arava/Mtx for now, doc wants to try > enbrel when/if it ever becomes available again. > Very strange. It feels like turning a light switch on and off. I felt > great, then within a hour I had joints swell up and trun red. Plus it > was 10 times worse then ever before, sort of like the remicade saved up > the TNF and released it all at once. > Bummer eh! > On another subject, any folder’s out there get a rather large work > only 75% complete. They better be giving lots of points for this one. > — > Dan > Help Find a Cure > http://www.bensonpolymeric.com/folding/start.html
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>Is approved for PA? Prob not. We are at the bottom of the list you know.
Dan, Sorry Remicade’s not holding it for you. I just started Kineret. Already noticing less swelling in my fingers after 6 injections. My dx is PA/RA…Doc put it through insurance as RA with psoriasis. Took a few weeks to get it approved, but, they (ins.) finally said okay. Good luck to you! Be well, Patty *~A friend is someone who reaches out for your hand, and touches your heart.~*
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I have been in a mild flare since well since spring. They have upped my dose and move the infusions closer together. I was hoping this would help but not so sure. Hope to hang in there till the next drug passes the FDA. Duckie – Hide quoted text — Show quoted text – > Newsgroups: alt.support.arthritis > This last infusion lasted two weeks. In a major flare now. Started > pred again and am going back to Arava/Mtx for now, doc wants to try > enbrel when/if it ever becomes available again. > Very strange. It feels like turning a light switch on and off. I felt > great, then within a hour I had joints swell up and trun red. Plus it > was 10 times worse then ever before, sort of like the remicade saved up > the TNF and released it all at once. > Bummer eh! > On another subject, any folder’s out there get a rather large work > only 75% complete. They better be giving lots of points for this one. > — > Dan > Help Find a Cure > http://www.bensonpolymeric.com/folding/start.html
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Is approved for PA? Prob not. We are at the bottom of the list you know. The people in the shadows. The unwashed! But that has it’s advantages also. We get you as our guinea pigs to try the new stuff. :-) > Gonna tri Kineret?
– Dan Help Find a Cure http://www.bensonpolymeric.com/folding/start.html
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>This last infusion lasted two weeks. In a major flare now. Started >pred again and am going back to Arava/Mtx for now, doc wants to try >enbrel when/if it ever becomes available again.
Soon Daniel. Enbrel will be available soon. Prays coming your way. You’re tough. You can do this. Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
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>i still know i have RA and can feel it gradually >progressing. :-(
Yeah. That is what I want. To forget, even for a few days a month, that I dont have this damn disease. Or even for one day a month. Or every few months. (sigh) Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
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> doc wants to try >enbrel when/if it ever becomes available again.
Why not try Kineret in the meantime? ~KJ Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential. Tina’s Togs http://tinastogs.com Quality Plus Size and Vintage Fashions Coming soon to a puter near you!
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> This last infusion lasted two weeks. In a major flare now. Started > pred again and am going back to Arava/Mtx for now, doc wants to try > enbrel when/if it ever becomes available again.
Straight down bummer about the flare. Gonna tri Kineret? I believe it was doing me some good until the infection made me stop it last week but I will be back on it next week. Be well, Larry — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).
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> The one before last was > 6 weeks and before that 2 weeks (feeling good). Each time the dosage was > increased, but the results are the same. I feel like a real human for awhile > then crash! I can function pretty well on the Arava but was hoping that this > would set me over the edge so-to-speak, without having to take drugs every > day. I never took the benedriil (sp?) either as had no adverse reactions to > the infusion.
Isn’t it interesting how these drugs react in different people. For me Remicade has been pretty steady. I have noticed a some increase in minor flaring since I dropped my mtx level, but otherwise it has been steady. I had one bad infusion but the flaring started within about 1 week. I can go the full 8 weeks without fading. Well the newest drug Adalimumab should be out in 2003 and it is supposed to be one of the best yet, so you may have a choice Enbrel or Adalimumab. Ken Ackers had a reaction similar to yours you might read his journal on AI. http://www.arthritisinsight.com/community/stories/ken2.html I hope Enbrel or Adalimumab is your miracle, sounds like it is time to move on. I’m glad I found my miracle cure and I hope you find something that works for you. At least you know anti-tnf gives you good relief; hopefully they will find the right type of anti-tnf. cheers! — MZ — Visit my website: http://www.mzuschlag.com
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