totally confused

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Regular Member

Date Joined Apr 2007
Total Posts : 164
   Posted 11/22/2011 11:07 AM (GMT -6)   
Hi all,

haven't posted in forever. I am totally confused and could use some suggestions from those of you going through similar situations. I have been ill since 1988. Started with a rash at Christmas time, doc thought I was allergic tot he Christmas tree. Also had joint pain, fatigue, low grade fevers, aches and pains, trouble walking. When I was admited to the hospital in February of 1989, I looked the Elephant man due to the hives everywhere and swelling. I have skin biopsies, blood test, muscle biopsies, xrays, you name it. By process of elimination... the docs back then diagnosed zero negative Lupus. meaning I have never had a positive ANA. I now have numbness and tingling in limbs also and a doctor who doesn't believe in Zero negative Lupus. I have retina damage from Plaquenil and the hives have returned. I have had elevated CRP tests on multiple occasions which means I have inflammation.

Right now the hives itch like crazy, my NPO is elevated, and the doctor wants me on imuran because I cannot take Plaquenil because of the retina damage it caused. Any thoughts, anyone experienced with it.

I am tired of taking one med after the other, and no definitive diagnosis, are the meds causing the problems?

Thoughts and experience would be appreciated.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 11/22/2011 11:53 AM (GMT -6)   
Imuran, Cellcept, and MTX are all commonly used with Lupus. Since we are all different and respond differently, it is difficult to know ahead of time which of these may help any one individual.

For me, Imuran did nothing -- no side effects, no improvements either. Cellcept was my miracle drug, and gave me back my brain (was having serious cognitive issues), although it caused some minor hair loss.

Other people have great results with Imuran but not Cellcept, or have more interesting side effects, just really varies from person to person.

Imuran doesn't sound like a bad option for you. If you don't have bad side effects, and don't see improvement, ask for a trial on Cellcept or MTX.

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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