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@obackus

I was diagnosed with RA and secondary Sjogren's in June 2023. I have been ill since October 2010 when I had an eye problem which was finally diagnosed in 2022 as an optic nerve bleed (I am told this has never been seen by top doctors in Boston???). I have had multiple tests, blood, scans, spinal taps, EMGs, you name it. After many years of being told I was crazy, I finally had a skin biopsy and have Small Fiber Polyneuropathy with Autonomic Disfunction (heart issues - Tachycardia, lung issues - frequent infections, IBS with severe constipation, neurogenic bladder - incontinence and retention) Every organ is being affected at this point. I am now suspected to have CVID - common variable immune deficiency. Things just keep coming. I am 53 and trying to work full-time, finish my Ph.D, and raise a family. A very long story - back to RA - I was taking Leflunomide which I was told was the best for me but it adversely affected my liver, and was recently switched to Hydroxychloroquine. I have been in chronic pain and illness for over 12 years with little help from multiple doctors and specialists. Any and all information about what others have experienced is welcome!

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Replies to "I was diagnosed with RA and secondary Sjogren's in June 2023. I have been ill since..."

I was diagnosed with RA after my second covid vaccine. I’m a couple years older than you. Athletic, fit. To painful and frail. I saw someone who hadn’t seen me in a year and they asked me “do you know where I can find Lisa?” A close friend said that she has watched me deteriorate. I tried to keep pushing. I have tried low dose prednisone, methotrexate and then humira. A few other less invasive meds. I’m taking narcotics to be able to move. I lost 15 pounds without trying and I was already lean. Currently on an anti inflammatory diet. Have been since December. I have no appetite due to the pain so it’s not hard to be on the diet. Because I was “normal” lol prior to the vaccines, my next step is to find a physician who is treating and studying long vax, vaccine injuries and long covid. I have been advised not to get boosted. I’m afraid it will do me in physically. I’m miserable. It’s hard for people to understand because other than being extremely underweight and unable to make plans, no one understands the pain and exhaustion involved. I got Covid earlier this year. No one believed me in a joking way because I mask at the pharmacy and have only been around people outside. I was put on paxlovid. I felt cruddy due to covid, but my RA symptoms greatly improved. It was oddly good. Came right back when I finished paxlovid. I have to say that the paxlovid kept the covid out of my lungs. My fever was gone within 24 hours, but I was just flattened. Another woman in the forum had the same experience. I will definitely post anything and everything that I learn. I’m a tough cookie with a high tolerance for pain. This is really hard. I get random rashes. A joint will blow up out of nowhere, lessen in severity of inflammation and then be ruined. Best to all dealing with this. I never imagined this happening.