After 9 years receiving Remicade Infusions, and 30 years prior to that on Enbrel, Humira, MTX, and even Gold Injections I have been diagnosed (sort of) with Lupus brought on by Remicade. Now I have two auto-immune diseases instead of one. ?? My Rheumatologist of course is cancelling my next infusion and put me on oral Prednisone for 3 weeks. My right hand is still swollen , inflamed, and painful after 9 days of Prednisone. My left hand cleared up weeks ago .My lab work also reflects positive and elevated results pointing to Lupus. In addition I also developed Raynauds at the time my hands became affected. Talk about tag-teaming me !
We are going to keep on eye on this for 5 weeks, no infusions, repeat lab and see if my hand had settled down. If the same my Doctor wants me to travel to the Mayo Clinic Rheumatology Department. He is actually a bit baffled and he has been practicing this for 30 years. This took a long time to ask this, but has anyone ever experienced this phenomenon as well? Thank You !
I was sort of dianosed with Lupus years ago, then they changed it to PsA. I have heard about this side effect, does’nt sound like fun!
Thanks for the reply. It sure isn’t. After dealing with this so many years and then this craziness starts. This has all slowed me down tremendously and that on it’s own is the worse. When I was first Dx, I was told I would be in disability in a few years, but I worked all my life after that , traveled, raised my family did it all. But this last year. It all hit me. Hopefully the fine staff at Mayo can sort me out. Thanks again.
I haven’t heard of this before and clearly neither have you or your rheumy either, by the sounds of it. What was it that made him suspect Lupus?
You must be feeling extremely hacked off, especially as you’ve had an unusually difficult year after coping with PsA for so long and so well.
I hope that it turns out you don’t have Lupus. Or perhaps that, if you do have it, it is less serious than Lupus can be when it appears all on its own. Please keep us posted. When are you off to the Mayo clinic?
Hi Sybil, This is a rare “secondary lupus” he feels. My lab work backed it up as well as my hands and nose discoloration and what appeared to look like a contact dermatitis. This has been since the end of December and even two courses of prednisone hasn’t cleared my nose and right hand. It is still red and swollen with white patches and my fingers crack open to the point I have to wear some sort of glove all the time. From what I read this is far from the Lupus one has initially. This, they say, can be treated fairly well as opposed to the original. That said, where do we go from here for treatment for the ongoing Psoriatic arthritis on it’s own? Do I now have two auto-immune diseases? Lots of questions need answering. Remicade was really a good biologic for me. Oh there were flare-ups but for the most part it was great. Having nothing to treat me while this is being sorted out is what concerns me the most. I have been on most of these drugs for years due to the length of my illness and of course my insurance won’t allow everything. I feel like I am starting over when first diagnosed. But, we will see. I see my Doctor again early June so we will go from there. Thanks for your response.
Is it ‘discoid lupus’ then? That’s a dx that was considered for me when I had ‘atypical’ psoriasis that was puzzling the derms. I panicked when I heard that but my rheumy told me that discoid lupus is not nearly as tricky as ‘ordinary’ lupus.
Not to diminish what you’re going through, far from it! Just hoping for the best possible outcome and musing on possibilities. But yes, what an absolute bummer to have to stop remicade. Wishing you lots of luck Erinsmum.
There is a primary lupus and secondary lupus. The secondary term is used to indicate it came from another source, other than appearing on it’s own. Thanks Sybil for your thoughts.