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New here-Question about Drug induced lupus

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LImom2
New Member
Joined : Apr 2018
Posts : 2
Posted 4/14/2018 3:45 PM (GMT -8)
Hi all,
I was wondering if anyone has been diagnosed with drug induced lupus erythematosus (DILE). 8 months ago it was confirmed that I developed DILE from taking Humira (7 years) and I had to immediately stop it. I had been having symptoms of DILE for about 4 years before I could finally get a diagnosis. The symptom I experienced was a rash on my hands, fingers, elbows, knees, and tops of toes, sometimes my face and neck, and back. The rash looked like mosquito bites and would spread and worsen with sun exposure. Sometimes my fingers would turn red and swell to the point that I couldn’t bend them. It has taken a long time for the symptoms to stop, but I recently went on a trip to Florida where I was in the sun for 8 days and the rash has returned. Has anyone experienced something similar and can offer some info on how long it took to completely clear up even with sun exposure? I’m worried this may be a permanent side effect! I will also add that the drug company, dermatologist and rheumatologist have said they have no idea when it will go away completely because everyone is different...thanks in advance!
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Ides
Forum Moderator
Joined : Nov 2003
Posts : 7198
Posted 4/14/2018 6:27 PM (GMT -8)
Welcome to Healing Well!

I developed DILE after first taking Remicade for almost 3 years and then Humira for 2.5 months. I had developed anti-dsDNA antibodies while on Remicade and then the antibodies increased greatly after being on Humira.

I had horrible fatigue, rashes and joint pain and swelling. I was on Plaquenil for 1 year after a course of steroids initially. and the antibody levels finally returned to normal. Literature says most people that develop DILE on the biologics are free of symptoms within one to two months after stopping the medication BUT in certain cases it can take longer.

Yes, everyone is different, but those here that have developed DILE from a biologic have seemed to returned to normal in less than a year.

Also, I went on to be successfully treated with another biologic after that. I was on Simponi for 9 years before I had to stop it because of an allergic reaction. So, there are treatments for CD after DILE.

Questions? Ask away!
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LImom2
New Member
Joined : Apr 2018
Posts : 2
Posted 4/16/2018 9:18 AM (GMT -8)
Thank you for your response. Glad to hear your symptoms went away, and you were able to take another biologic. I’m currently on stelara and don’t feel like it is working as well as humira or remicade did and my drs. said I can never go back to similar class drugs because of the DILE.
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