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Drug induced lupus from remicade help?

Tue, September 14, 2021 3:30 PM

Have had severe joint pain MIRRORED in my ankles first and now knees, ankles and elbows since march to now, so intense that I can’t cook, clean or work. Bed bound for 6 months. No lupus blood work has come back positive only a positive ANA with a homogenous pattern. Finally saw a rheumatologist this Wednesday and they really aren’t sure whats wrong with me as my bloods are normal. They don’t believe my theory of drug induced lupus as I have no rash and the journal reading shes done on it says it should include some positive bloods of lupus accompanied by a rash. Just wondering if anyone has had just joint paint and has been diagnosed with DIL because of remicade/infliximab. I have been on it for 8 years, developed scalp psoriasis 4 years ago. Apart from that it has kept my crohn’s disease in remission.

i have now been diagnosed with drug induced lupus. Quite terrible that my doctors haven't believe me since march, finally when i saw the most senior doctor in royal free hospital rhematolgy and after more body scans and testing. There is nothing else abnormal. I have one abnormal blood test to do with blood clotting, my lupus anticoag screening test, the dilut russel viper ven ratio 29.8%. My appt 42 seconds. Apart from these and an ANA of 1:320 I have had nothing else wrong with my from the testing part. I have had infliximab every 8 weeks for 8 years. I am now 11 weeks past my date i had it last, i do feel improvements. After this ruining my entire year and gaining 20kg from being in bed for a year unable to even walk, its nice to have some hope that I will be okay again. Now i have 20kg to lose and the most unfit ive ever been at only 24 years old. By every doctor even my gastro doctor who still doesn't believe rhematology told me that it was impossible to have drug induced lupus as its so rare. I can't believe how terrible the doctors have been in London, two of the best hospitals i attend, chelsea and westminister and royal free. Still seems like theres a lot of learning to happen with drug induced lupus. My rhematology doctor did find a journal where you take infliximab and the week after you can feel completely well for 1/2 weeks then it hits you again terribly. I did have this twice this year, which is what confirmed it for him that i may have it.  I hope it is disappearing as all the reading ive done on reddit of people who have actually had it say it can take 6 months to a year to disappear.

As im on nothing for crohns anymore, its completely possible that my crohns disease can come back which im really scared about. I havent had much of a flare in 8 years, its quite sad that it worked so well for me and then suddenly did this to me. When i first got crohns i had it really badly and got down to 40kg vomiting anything i ate even a small piece of chocolate or a packet of crisps id vomit instantly. It then took a year to get to finding infliximab. Extremely terrible. Chelsea and westminister is a really terrible hospital in every aspect. The peadriatics of gastro was good due to dr fell, dr epstein was TERRIBLE. Worst doctor ive ever met, really rude for peadratics doctor as well. So mean. Not sure why ive never changed hospitals, just seems long but i really should have and might need to. As my doctor didnt even care to ask about my symptoms of my legs hurting since march. Said she didnt believe rhematology at royal free but said ok whatever come off infliximab, then proceeded to book me an appointment 5 months later after that phone call? She does not give one toss at all for patients. She advised me to stay on azathioprine, but azathioprine extends the time inflxiimab is kept in your body so i decided to not stay on it, which i think is benefitting my dil. Again, this whole year ive been a better doctor than anyone ive come across. Pure laziness from every doctor ive come across as soon as theyre not sure whats happening they pass you off even i

FPO Crohnsdisease10
Joined Sep 14, 2021

Sat, June 04, 2022 4:39 AM

Reply posted for Crohnsdisease10.

This is an excellent article! I am very eager to see your rather beneficial information. Other than that, this is a great blog with loads of useful information. Keep up the great work you're doing here!
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FPO minion12
Joined May 10, 2022

Thu, December 30, 2021 12:01 AM

Reply posted for Crohnsdisease10.

I feel sorry for your condition :(

FPO mattpobrien4
Joined Dec 29, 2021

Sat, December 18, 2021 4:03 PM

Reply posted for KristaAlyce.

Hi thank you for your reply, so it took you 4 months to feel a bit better? Sorry your crohns is bad again, im incredibly scared of my crohns flaring again as i have been okay for 8 years and when i first got it i was in an extremely bad shape. Hope you find a solution. As they told me i probably cant go on biologics again

FPO Crohnsdisease10
Joined Sep 14, 2021

Tue, December 14, 2021 4:05 PM

Reply posted for Crohnsdisease10.

I was on Renflexis (biosimilar) for about a year and a half when I got extrememly sick. I was tested for everything viral, fungal, bacterial, etc. and the only thing that triggered in my bloodwork was Lupus. I do not have lupus but had all the symptoms of a lupus flare. Between the GI and rheumatologist, they decided I had DIL and I had to stop taking the Renflexis. I'm now 4 months off the medication and most of the symptoms have subsided, but Im also having a massive UC flare being off medications again. 

FPO KristaAlyce
Joined Dec 14, 2021

Thu, October 21, 2021 4:50 AM

Reply posted for Crohnsdisease10.

It reveals how nicely you perceive this subject. Bookmarked this web page, will come back for extra topic. I found simply the information I already searched everywhere and just could not come across. What a great web-site.

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FPO dotyhughes117
Joined May 28, 2021

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