Has anyone done this? - Immune Disorders Message Board

Hope J · 11-13-2005, 12:40 AM

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!

Sun_Shine · 11-17-2005, 02:41 AM

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.

Hope J · 11-17-2005, 04:09 PM

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!

serendipity02 · 11-27-2005, 12:00 PM

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.