I'd like to try to go off of the immunosuppressant (hydroxychloroquine/ plaquenil) that I'm on to see if I'd be okay without it. I have mixed connective tissue disease and recurrent polychondritis. Has anyone done this? I go through occasional bad spells and "flare ups" but at my last appointment (about 6 months ago) my ANA was normal for the first time in about 4+ years and I feel like I am doing well. Will talk with the Rheumatologist soon, but wanted to see if anyone has gone off their meds successfully. Thanks for any input!

Hi Hope! Glad to hear you are feeling better. I would not suggest going off the Plaquenil without first talking with your doctor. I had to go off of it & went into a major flare that including having to get multiple doctor interventions to get me stablized. It wasn't pretty. My body with just a few days had all it's symptoms back x10 plus a bunch of new ones. However; everyone's different but, it might be worth a call or check up with the doctor first before trying to go off. :cool:

SunShine - Thank you for the warning! Ugh - I hope you are doing well again. May I ask how severe your symptoms or ANA, etc. were when you initially went on the meds? I was having multiple things going on that are right in line with lupus/MCTD so I understand why I got the diagnosis; but as I read about the difficulty that others experience, I wonder if my symptoms were not as severe as many people have. I'm just curious how soon other rheumatologists put their patients on meds. Thank you sooooo much for responding, I needed to hear that warning! My Dr. is on vacation for another week so I haven't been able to talk to him yet. I hope you are back to feeling better!

Sun Shine, I had the very same problem you did. I will NEVER take it upon myself to take myself off of my meds again. Its been well over a month for me and I'm still not back to where I was. I am in a medical trial tho, for a new autoimmune drug.