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remicade gave me "drug induced lupus" now same symptoms on humira

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Posted 6/15/2009 10:50 PM (GMT 0)
hello

   I was taking the max. dose of remicade for about two years. after the first year i started developing a rash on my elbows and forhead after trying many useless creams prescribed by my doctor and dermatologist i was told that i had "drug induced lupus". my GI stopped the remicade imediatly (other than this i loved the remicade) once it stopped i was put on humira the rash on my head cleared but my elbows didnt . i was told that there was a chance that i could have developed full blown lupus instead of drug induced lupus . could humira be giving me the problem all over again or is it the remicades fault and i developed lupus. if anyone has had this problem please help i dont want to stop taking humira, life is not fun without it, but i also dont want lupus one chronic illness is enough for me..

                                         ~Ryan~

                          17 year crohns  mad

Posted 6/15/2009 11:36 PM (GMT 0)
It can take months to reverse drug induced lupus, so it will be hard to tell if remicade caused full blown lupus or if humira is also causing problems. Of course, the rash may still clear up and that would be the best outcome.
Posted 6/15/2009 11:45 PM (GMT 0)
Welcome to healingwell Ryan!
I also have lupus due to remicade and humira, it is a small portion of us that get it. Yes humira and remi can both develop it. The good news is it usually stops or gets somewhat better with not taking the biologics (like remi and humira). I think you will have to use your own judgement as to weather or not to continue the humira, for me it made me have so much pain I had a hard time moving like breathing hurt. I do not know how bad you would consider yours, and I think considering what illness is going to be worse for you is something to think about?
Good Luck,
Navy
Posted 6/16/2009 1:04 AM (GMT 0)
Me too...I have lupus developed from Remicade and Humira. The lupus flare that I developed after about 2.5 months on Humira was so severe I could not continue on it. I had severe joint pains, fever, and unbelievable fatigue. I was on prednisone for a long time to beat down the symptoms. That was 12/2007. I just recently started Simponi, another anti-TNF. My rheumy is nervous but my quality of life had gotten so bad that I was willing to give it a shot. My guts are in remission but my joints are the problem.
Posted 6/16/2009 12:56 PM (GMT 0)
joint pain was never an issue until i had my resection. that was also the time i started the remicade. when it would get near the next dose my joints would hurt so bad i couldnt move. my GI blamed it on the chrohns and upped the dose to the maximum. i am now starting to wonder if it is the lupus not the crohns the joint pain is not an issue now on humira but i take that every two weeks not every six like the remicade
im starting to wish i never started any drugs for the crohns. prednisone destroyed my joints and has given me osteoperosis!!remicade gave me lupus!!
Posted 6/16/2009 12:58 PM (GMT 0)
I'm so sorry, Ryan. I was on Humira for about a year & started to get lupus. I've been on Remicade since January & am hoping I don't end up in the same situation.
Posted 6/19/2009 11:12 PM (GMT 0)
same thing happened to me...humira has the same mouse protein.

my doctor is going to try me on Cimzia in a couple of weeks. he said he has had many patients who reacted to remicaDE And humira have success on cimzia. goodluck!
Posted 6/20/2009 1:01 PM (GMT 0)

Hello Group!  New Member here!

Dx'd with Crohns 6 years ago.

Only treatment right now is Remicade, every 12 weeks. last treatment 04/03/2009.

I have incredible joint and muscle pain the closer i get to my 12 week infusion, sometimes at 8 weeks after an infusion, as soon as i get the Remicade, my lupus like joint pain goes away immediately.  though after this time some minor pains came back only 1 week after infusion.  Talking to my GI this week, not going to do remicade anymore, i am in Agony!  Crohns was bad enough, but this is worse... have not had Crohn's flare since May 2007.

You think that Remicade would be out of my system by now since i took last dose 04/03/2009, but the pain is very bad. Not sure what my next step is....

Female - 48 yrs old

Dx'd 6 years ago, but have suffered for about 12

No meds, with exception of Remicade

Prior meds - 6MP, Flagyl, Prednisone, Asacol, others i can't remember, none worked...

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