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08/18/2008 11:41
Cateyeslmm
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Posts: 3
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I have had lupus for several years up til a year ago it has been pretty much under control and in remission. But for the past year I have been in a constant flare and they keep getting worse. The doctors just keep adding more med's on to me. Now the newest one is REMICADE. I go in twice a month for three hours while they hook me up to the I.V. and run that darn stuff through my vains, I'm not doing any better yet, to tell the truth I have been actually doing somewhat worse, my sister think it is the Remicade, has anyone else ever had bad experiences with this medicince? Please any help would be greatly appreciated. I have been having problems with my eyesight and the doctors cant come up with an answer for it. Yes, I'm on Plaquinel and I see a Eye Doctor thats not what is causing it, I have already checked. I'm also on Methotrexate, Lyrica (for my fibromyalgia), Prozac, I was on Cymbalta but they just took me off that thinking that was the problem, I take protonix, salagin (for sjogrens), Folic Acid, Topamax, Vicodin, Fintynal Patches, Xanax, singular, I think that is about it ( I think that is enough.lol) I really am looking for some help for my problem if there is anyone out there that may be having the same kind. The loneliness is so hard to handle, even if you are surrounded by people you can feel so lonely because no one that doesn't have to deal with this illness can ever understand what you go through on a daily basis.
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08/18/2008 16:59
Wildflowergirl
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Hey you I have not been on Remicade but put on Enbrel by accident when they thought I had Stills disease rather then Lupus. All of a sudden after many tests about 6 months later all the blood changed and showed up Lupus test positive. The Enbrel made me worse Im shocked your on Remeicade I never heard of anyone with Lupus on that RA but not Lupus.But what do I know I have only been diagnosed for a few months after being sick for 8 months. Hey I have not been on Ramicade but I too have been though the ringer I just got out of the hosipal from a complete break down over my health and so much more I lost it. I was in the hospital for a week. Im better but not 100% I would love for you to email me and we talk I know the lonely feelings

Hang on sister!

Heather/wildflowergirl

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