Anyone stopping immuno suppressing drug had a flare up?

@ead Your flare up sounds painful. I know that when i was cutting back on my prednisone, I would start to feel changes. My walking changed and I would get confused easily, but then, I didn’t have RA. My autoimmune condition was on my brain.
Most autoimmune diseases need to be kept in check with drugs. Is there another drug the doctor wants to try?
Let’s wait for other members to chime in.
How long have you been off azathoiprine?

My ra flared up hard when I sent 3 weeks without my methotrexate. I'm still having issues.

@lharrison74 RA can be so painful and difficult to handle. What made you go off of methotrexate? Were you going to try a newer drug?
Can you tell us more about the change?

I was taking hydroxychloroquine for lupus in June. Was having hand swelling issues when I first saw doc but RA did not show up. Went off hydroxy 3 weeks later. Couldn't handle it. Got sick. Kidney issues. Doc immediately took me off. Not quite sure why I was on it when my symptoms were manageable. Now I suffer from low blood sodium, which almost killed me, major hair loss, knees hurting, constipation, depression. Almost as if the meds started the lupus wheel turning. Seeing lupus doc on Thursday. Not sure what he's going to do. I can handle Medrol steroid but currently waiting for a petscan today and didn't want to be on it. I also have chronic leukemia. Never sure which disease or which Med is causing my issues as I'm very sensitive to drugs and the side effects are very similar. Docs not very helpful. Don't know what I'm going to do. Not enjoying life at all. Meeting virtually with new therapist tomorrow morning. 🤞🏻🤞🏻 I hope he works out.

Every time I have gone off my Biologics (due to reaction, or a waiting period to start another drug) I eventually have a flare. Sometimes it takes a while longer, making me hope my PsA has gone into remission…but the joint symptoms (or Uveitis) always returns with a vengeance. Right now I’m taking Orencia infusions. After about 18 months, I have had continual flares…so the Orencia no longer seems to be working (I have to take Predinsone or have joint injections of Cortisone). I am not going for my next infusion, and will try something new in the next few months. (I have already been on a number of biologics, so the list is getting smaller.)

Terrible flare since January going off 12 years medrol. Capitulating to trying methotrexate which I can no longer put off. Did ok on medrol but risk of diabetes too great and it already put me into osteoporosis. Daily pain and fatigue wearing me down. Sometimes give a thought about resuming medrol but worked too hard to get off it. Not good choices to medicate or not medicate, either way a risk.

@gdcm @tarmansbks Im sorry you're having such difficulty with meds. That is my issue too and why I really don't want to try other meds! So I was printing out some notes to take with me to rheumatologist tomorrow and what do I note.....the lupus Plaquenil and the leukemia Zanubrutinib have 99% of the same exact long list of side effects 😳😳😳😳. I was on BOTH of them at the same time and went off them just weeks apart!! So. Which one was the cause of my major issues? Personally I think I am having issues with oxygen due to low RBC and possibly anemia. My primary is very concerned but without knowledge of lupus and leukemia his hands are basically tied. But he does take the tests!! I wish there was a magic pill we could all take which would make us better again. I'm tired of starting and stopping meds which are not even helping me. And Farman, I understand how difficult it is getting off meds you've been in a long time. I am currently tapering off and anti anxiety Med I've been on for 12 years. I feel you, and understand about restarting something that took so much out of you to stop it. I'm sorry. I just had dexa scan. Osteopenia. I'm glad. I've hovered between osteopenia and osteoporosis over the years. I didn't think my numbers were that bad. I'll take osteopenia lol. But fatigue. I can't handle the fatigue. It came on suddenly and turned my life upside down. I'm sure it has to do with the RBC. But docs ignore me when i mention it. What is your fatigue from, tarman?

Many years ago I struggled with the same decision. I ended up taking the methotrexate and am so glad I did. It worked so well for me. It might not work like that for everyone but research back then made it the best choice. Attitude is a big part of healing so keep a positive attitude and keep smiling. Good luck.

How long were you on the Methotrexate?

I’ve been on hydroxy for 15 years and never had N issue with it. I was also on methotrexate for 5 years with o issue except thinning hair. I was diagnosed with PMR 6 months ago and was on Medrol. Now off and in the middle of. a flare. There’s no magic pill for these illnesses.