I have had extreme joint pain for the majority of my life. It wasn't until I was about 13 that things got really out of hand and my doctors started taking me more seriously. It started with ankle pains and repeated ankle sprains, and over time whatever is plaguing my body has come to affect nearly every aspect of my being from head to toe. I hurt constantly and chronic pain has become my new normal. I have been officially diagnosed with Reflex Sympathetic Dystrophy (RSD) in both ankles, Hashimoto's Thyroditis (although one endocrinologist disagrees), and Fibromyalgia and have received a myriad of unofficial and unconfirmed diagnoses including localized osteoarthritis, juvenile rheumatoid arthritis, and autoimmune inflammatory arthritis.
I started seeing a fantastic rheumatologist last September and she actually took my concerns seriously, unlike many other doctors I had seen prior that simply ignored my conditions due to my young age. From the very beginning, her and my primary doctor have both thrown around lupus but neither have confirmed the diagnosis. My rheumatologist feels that I may very well have arthritis of some sort as the traditional fibromyalgia medications still don't nix the ever present joint pain and inflammation. Just in the past six months, my fingers have also started turning and deforming which is definitely not typical of fibromyalgia.
Anyway, now that I have sufficiently covered the background, I had a question regarding the medications I have been prescribed. I have been taking methylprednisolone and nabumetone for many months and I notice a difference in my joint pain, but they don't completely do the trick. As a result, I was prescribed plaquenil back in December. I still haven't started it as I am terrified of the side effects (the potential retina damage in particular). I have talked to both my rheumatologist about this as well as an optometrist and both have repeatedly assured me that it is completely safe. I understand that less than 1%of people experience this, but I have been known to experience incredibly rare side effects of medications in the past. So my question essentially is, is it ok to take this medication without a diagnosis of either of the diseases it is intended to treat? Has anyone else taken this an experienced any adverse side effects?
Thank you so much for your time! Have a fantabulous day!