Been Dx with Remicade induced Lupus. Anyone else with this? It’s horrible !! Never felt worse even after 37 years of PsA. Would love to talk to someone who is suffering with this as well.
Oh my gosh! I’m so sorry for you! Praying for you to feel better soon!
I remember the rheumatologist mentioning this. Do you have a game plan in place already? This means that the tnf-inhibitors are no longer an option, is that right?
Correct regarding the Anti TNF Inhibitors, now on Oriencia infusions. Only have had 2 infusions going for #3 this week. My Rheumatoglgist is trying to sort out how to treat all this now. Along with the Lupus came Raynauds disease and IBS, The awful Lupus rash on my right hand has yet to clear up and it has been 7 months. Raynauds is still with me but thankfully winter is over so not nearly as bad. My Doc has told me how rare this is and is hoping the Lupus will somehow go away. He has never dealt with this is seems and if no better by August, he is sending me to the Mayo Clinic for an evaluation.The fatigue that comes with Lupus is really kicking me sideways and of course now I have started with a Psoriasis flare up. Just what I need on top of all this.When I asked which disease we are treating, he said the PsA. Only know what I have read on line about Lupus treatment and to be honest I am so fed up with all this I just don’t seem to care. My infusion Nurses are the greatest though and I have been seeing them for 9 years, since I started on Remicade. Of course they had not heard of this either but when I went in two weeks ago I was thrilled they took the time to read up on this. They are the best. So the game plan is to wait longer I guess. My Rheumatologist I had for 9 years here retired and he was the absolute best. So now I have a new Dr and not feeling too great about that right now. My Dr where I moved from 9 years ago was with me 17 years and she was absolutely amazing.But the way I have been feeling the past 7 months I don’t really care about much. My lifestyle has diminished way over 50% and I just don’t feel like doing anything. After 37 years with PsA, a full life and career with worldwide travel, the works… but now, I just want them to figure out what to do here.
Sorry to ramble on, for that I do apologize.
Erinsmum
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Thank you so much AngieB!
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How difficult! I really hope it gets better for you soon. The only (very little) that I’ve read on anti-TNF induced Lupus indicates that steroids, antimalarials, or Ritixumab can be used to treat the Lupus (https://www.rheumatologyadvisor.com/rheumatology/drug-induced-lupus/article/626159/) or that in some case studies it resolves in its own with just stopping the anti-TNF (within a few weeks/month).
It is very uncommon, you unlucky thing, and if as a result your Rheumy is not confident treating it I think your Rheumy has a great plan to refer you to Mayo if it doesn’t resolve on its own. Often in these sorts of situations I will ask the doc to start the referral process straight away, because appointments can take a while to get, then if it resolves I’ll cancel the appointment (with polite notice of course). Is that something that might be worth trying?
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You are 100 % correct and thank you for the info.
I seem to remember synthetic antimalarials (used to treat Lupus) are contraindicated for psoriasis patients, I think they cause flares.
I’m sorry you’re going through this! Hope you get some relief.
I just did blood work for lupus because Dr said I carry the gene. ??
I looked at my result online today and the results that would show if maybe I have it or not all say “cannot provide information please contact your provider”. So strange because every test I’ve had for years for anything is on there and has always shown all details… so of course I cannot think about anything else and calling them first thing tomorrow.
So maybe I’m in your same boat. Idk yet…
@Mwitt
@Erinsmum
I hope it all turns out for the best for both of you and the Lupus threat goes away! Mwitt, I’d be worried, too! I hope you get good test results! 
Good luck!
Doesn’t surprise me. This is all too strange. Have not been on the antimalarials and it’s a good thing as I am now having a psoriasis flare up and haven’t had one for 3 years. I really don’t like the idea of long-term steroid use either. Its a waiting game until I see my Doctor in 7 weeks. Thank you.
Carry the gene? Never heard of that one. My ANA was elevated which is a clear indicator of Lupus.It’s been almost 9 months now since the symptoms stared, probably even more but didn’t really know what was going on. I have been off Remicade for 4 months and no improvement but I have read a lot about this and no one, obviously. has the same result when off the drug that caused this.The time frame varies from a few weeks to many years so I just don’t know. I just know that dealing with PsA is bad enough but add Lupus to the mix and it is so much worse. I have been on Oriencia Infusions for a few months and it seems to help my joints however, I am now having a massive psoriasis flare up (haven’t had one in 3 years) but I figure, why not at this point. This round of psoriasis is very different than the plaque psoriasis I usually have. Not wanting to get too graphic here, but the lesions are tiny, bright red and leave scabs and bleed when I scratch them. Is this a lupus thing? My hand is so nasty looking I hate going out in public. It looks like the worse case of eczema ever and no matter what lotion, cream, etc I use it never goes away. I don’t see my Doc for another 7 weeks so I just do my best to deal with all the side effects of the Lupus.
Let me know how your results come out and I really wish you the best with this. Until now I knew of Lupus but had no idea how it can effect the body.
Sorry this took so long to respond. But going to do just that when I see him again in 7 weeks. The fatigued is doing me in and even had to stop my Volunteer work at our local Hospital until this gets resolved. I am on Lupus sites as well trying to learn as much as I can. Thank you so much.
Been on Oriencia Infusions for a few weeks for the PsA. Not being treated for the Lupus at all. My Rheumy is hoping it just “goes away.” sigh
Carry the gene? Never heard of that one. My ANA was elevated which is a clear indicator of Lupus.It’s been almost 9 months now since the symptoms stared, probably even more but didn’t really know what was going on. I have been off Remicade for 4 months and no improvement but I have read a lot about this and no one, obviously. has the same result when off the drug that caused this.The time frame varies from a few weeks to many years so I just don’t know. I just know that dealing with PsA is bad enough but add Lupus to the mix and it is so much worse. I have been on Oriencia Infusions for a few months and it seems to help my joints however, I am now having a massive psoriasis flare up (haven’t had one in 3 years) but I figure, why not at this point. This round of psoriasis is very different than the plaque psoriasis I usually have. Not wanting to get too graphic here, but the lesions are tiny, bright red and leave scabs and bleed when I scratch them. Is this a lupus thing? My hand is so nasty looking I hate going out in public. It looks like the worse case of eczema ever and no matter what lotion, cream, etc I use it never goes away. I don’t see my Doc for another 7 weeks so I just do my best to deal with all the side effects of the Lupus.
Let me know how your results come out
He said with my initial bloodwork I tested positive for the lupus gene. I am so new to this all and don’t know what anything means really but that’s what he told me and he said that people can have the gene but not have lupus so that it didn’t mean I have it but he wanted to test me for it to rule it out. I have a call into my dr. This morning to get my test results. I’m anxiously awaiting their call back.
I’m sorry you’re dealing with all that.
I didn’t know lupus could “go away” is it not something you’ll have forever? I hope it does go away too!!
Here is an interesting website about genetics. https://resources.lupus.org/entry/genetics I know autoimmune diseases can be linked by genetics I wasn’t aware there is a specific test for a certain gene for it.But they always asked when first diagnosed if any family member has had these diseases. And none in my family that I was aware of ( not much known on my Father’s side at all)but my daughter was recently diagnosed with RA and is now on Humira. She has suffered for years and seeing what I have gone through refused to see a Rheumatologist until now. She always took the holistic approach until a few months ago. But I have notice she has AS in her neck as I do and has always suffered that horrible pain in her shoulders and neck for years. She is however doing well on Humira. So there is the genetic connection. . I have read so much and had a bit of a head start as I was a Critical Care nurse so the terminology is easy for me. And the deeper you get in to research the gene connection comes in but again had no idea there was a specific test other than the ANA.
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How absolutely awful. I’m sorry to hear that you’re going through this, and hoping it “just goes away” for sure!
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Thank you it has been a challenge. Trying to post as much info as I can in case someone else has go through this. So far no one and I post on Lupus threads as well. Perhaps they are just to tired to type. HAHAH Have to keep my sense of humor or I will go MAD! Miss Witt here seems to be having problems and awaiting her test results to see if this has happened to her. I truly hope not. The acronym is DILSE, Drug Induced Systemic Lupus Erythematosus.
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