@2penelope
Ugh, I should have searched about Plaquenil on this site a long time ago and finally just started searching and reading about Plaquenil users. I TOO was on Plaquenil for a long time. I was put on it in December 2010 and since then I have been taking 2x a day 200 mg. My rheumatologist has changed two times with me remaining on it at that dose. I remember the first rheumatologist who was excellent doctor, said at a certain point I would need to stop taking it. Then my replacement rheumatologist #2 just didn't raise it as being a big issue. Additionally Dr. #2 had to take me off Sulindac because after I had two ischemic strokes I had to go on Warfarin. So when my inflammation got bad she put me on Predisone daily doses up to 5 mg this year. About a year ago she said I had been on Plaquenil way longer than I should be using it. So I needed to get some big screenings done by an eye specialist. The good news is that nothing severe has showed up yet in my eyes, Soon after we started tests on my eyes Doctor #2 quit her job. I had to wait for a new rheumatologist #3 to get hired and catch up with my first appointment with the new rheumatologist. He was like, I must get you off the Plaquenil and no more steroids! That leaves me on zero medicines for lupus. In the meantime the eye specialist had inconclusive results of eye damage, but gave a very, very strong suggestion to the NEW rheumatologist to take me off Plaquenil after roughly 15 years.
A big concern I have is that I also am a warfarin patient, due to me having APS (of course that being related to the lupus) causing me to have 2 ischemic cerebellum strokes in 2022. I am worried about coming off the Plaquenil AND the Predisone at the same time sending me into a bad flare. I have been lucky to have NO flares since 2009-2010. I am starting to have more pain as my body's cells begin to eek out the medicine. I wish there were options for things to treat my lupus that do not interfere with the warfarin. Years ago I did take Celebrex, but as of right now all I am doing is large dose D3, Vitamin E and Fish Oil to remedy my increasing inflammation in my right hand, right hip, sometimes low back and neck, left knee and left foot. My first lupus flare actually attacked my rib cage and it was a combo of Lupus and Tietze's Syndrome. I had never hurt so bad in my life when that first flare happened. I hurt so badly I was afraid I was having a heart attack, and the pain was like nothing I had ever felt before. Going back to that kind of pain is something I thought would never ever happen, but now it could be back and is lurking right around the corner.