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kimor-anyone have Drug induced Lupus from Remi?

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Posted 4/19/2009 2:24 AM (GMT 0)
Looks like we may have a new disease to add to our UC. The constant fatigue, elevated ANA test(640),and overall crummy labs have led our GI to send us to a Rhumatologist for Lupus workups. Having read earlier posts, I'd be curious if most had the drug induced kind that went away when the Remi was stopped. I fear the stopping of the only drug that ever brought relief, but fear worse adding another full blown disease to our repertoire. No good choices. Anyone not Have Lupus with these symptoms? Daughter is Anemic, dehydrated , and has protein in urine, to name a few.
Words of wisdom, anyone?
Posted 4/19/2009 7:40 AM (GMT 0)
Hi...well unfortunately, autoimmue disease loves company.

Your daughter is at a difficult age as well considering all the hormone fluctuations, growth, etc....

I just saw a rheumie on Tuesday and had lots of blood taken for specific enzymes which will help clarify my elevated enzymes and symptoms as to whether they're UC-related, PSC related or other autoimmune.
She clearly crossed off Lupus, however.

Lupus has lots of mimics as well...but it's always best to be tested thoroughly for all the possibles including infection, lyme disease, epstein barr, mono, thyroid, etc.

When is the appointment with the rheumie?

quincy

Posted 4/19/2009 9:17 AM (GMT 0)

Hi

I just wanted to chime in and say that I am on Remicade for Psoriatic Arthritis.  It cleared my skin very well.  It has not done anything to improve my joints.  I have awful fatigue and also went from ANA negative to positive now.  Also, amd now pos for anti-dna ds.  I have new onset shortness of breath so I had to start prednisone.  I feel I have drug induced lupus.  From what I have read, it it supposed to resolve once the drug is stopped.   However it is very scary to me.   My rheum Dr says,  "Maybe or Maybe not"  Crazy.  I am not sure what to do next......

Posted 4/19/2009 4:01 PM (GMT 0)
I do have Remicade induced Lupus. I was referred to a rheumatologist by my GI. There is not a definitive test for Lupus. Both of my doctors have seen many patients with Remi Lupus and they both said that the Lupus has gone away in every patient once the Remicade has left their system. I had my last dose of Remicade at the end of January. I was put on prednisone at the beginning of March. I have just completed a taper (15mg, 10mg then 5 mg - each for 2 weeks). The prednisone helped my extreme pain. I still am really tired and have some pain (eased by Tylenol), but I am almost 100%. I am really disappointed that I can not continue with Remicade.
Posted 4/19/2009 5:53 PM (GMT 0)
The exhaustion is extreme. I feel like I have the flu EVERYDAY. I am upset with my Dr because I went to see him on 3/25 crying because I was in so much pain and had exhaustion and shortness of breath, fever, insomnia. They did all the labs for Lupus they came back positive and they gave me another dose of Remicade on 3/31. Did not even bother to mention my labs. I called to get my labs and kinda freaked out. I talked to the doctor a week later on the phone and he said I should continue Remicade "If it helps me" I am a RN and have decided against anymore Remicade. I also called Remicade-Centocor and reported my side effects.
Posted 1/14/2012 6:51 PM (GMT 0)
Remicade Induced Lupus is real and debilitating.....the GI's try to hide it or deny it. You need a competent and compassionate rheumatologist to help you. It can take up to 10 months to get better. I am only in week 9 after my last Remicade (which the GI should have NEVER allowed after the elevated ANA). Pain meds don't help when it gets really bad. I just wait it out until the episode passes. I waited too long to advocate for myself. I am now not working ( I am a teacher for 25 years). Some days I cannot dress myself or hold a fork.
DO NOT DOUBT YOURSELF...........REMICADE IS WONDERFUL FOR SOME.....BUT IT IS NOT FOR EVERYONE............
Posted 1/14/2012 8:49 PM (GMT 0)
Katmom, I am so sorry to hear of this development. My husband and I are debating remi vs surgery at this point for our daughter and one of our big fears is Lupus. It's a very serious condition and in my opinion much worse that UC. The "good" news though is that my husband has been reading the literature and was telling me today that from his pubmed search it seems that all of the reported cases that he has come across of remi induced lupus go away after stopping the drug. I know how hard it is to go back to a flare situation (though hopefully she wont - if remi has induced full mucosal healing it's very possible for her to maintain on her other drugs) but I don't think an ethical GI would let her continue IF she does have lupus. Please keep us posted, we are in your thoughts.
Posted 1/14/2012 8:50 PM (GMT 0)
oops. just realized this is a very old thread. i guess Katmom's daughter is okay (hopefully).
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