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Remicade-induced lupus!

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Posted 9/23/2009 4:37 PM (GMT 0)
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I can't believe it--my "magic bullet" has turned into a booby trap!  I go to the GI Doc

tomorrow, but according to all my research, it looks and feels like I've got lupus--

at least the symptoms. 

Started remi infusions last Nov and all was sweetness and light, but just before my last infusion, and ever since, I've been plagued with migrating severe joint pain, sore throat, swollen joints, some edema, and most of the other lupus symptoms except for the facial rash--got to be thankful for some things!

The good news is that once you get off remicade the lupus is supposed to go away

gradually--may take months.   I'll know for sure if the Doc does the anti-histone blood test.

Anybody else have this happen?  According to my research, there are about 38

drugs that are known to cause this.   And it only happens after you've been on the offending drug without symptoms for some time.

confused

Michigoose

Posted 9/23/2009 5:42 PM (GMT 0)
Hi Michigoose,

I was diagnosed with it in March. I went on prednisone and the symptoms eased considerably. I finished the prednisone in May and I have not been on anything since. I still have joint pain that is manageable with Tylenol and by resting a lot. I was really disappointed that I had to go off Remicade. Right now, I'm not on any drugs for my colitis and my symptoms are not too bad. The next step for me is an experimental drug (Avonex - which is the most prescribed MS drug). Ironically, I can't go on it yet as I'm not sick enough. I'm fine with that though as I'd like to fully recover from Lupus first. Good luck, I hope you feel better soon.
Posted 9/23/2009 10:11 PM (GMT 0)
Thanks Kimor--

It's good to know there might be light at the end of the tunnel.

Good luck to you, too.

Michigoose

Posted 9/24/2009 2:46 AM (GMT 0)
Yes, this happened to me as well.  I was on remicade for about 6 months when the joint pain started (along with headaches, chest pain, strange breathing).  It was AWFUL.  I could barely walk up the stairs one day and then not move my wrist the next.  My dr didn't even do the blood test.  He just had me stop the remicade and start humira.  The pain was completely gone in about a month. 
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