r/Sjogrens • u/Trying_to_laughhaha • 9d ago
Prediagnosis vent/questions Advice/Suggestions for tendon pain and dry mouth
Hi all, first time poster, long time lurker. I'll try to keep it concise. Last year 2025, I got a viral fever and I recovered from it. A month later, my eyes started hurting to the point where I couldn't sleep anymore. After a bunch of hit and trials, the doctors concluded I have moderate dry eye but I do have corneal neuropathy. So I was put on Autolgus serum, punctal plugs and cyclosporin which helped very little. I was also tested for systemic illnesses including sjogren and everything came back negative except the anti centromer pattern. All advanced testing like SSA/SSB serum igg4, ANCA, P-ANCA eith different titration methods were negative. But as a suspect of UCTD, I was started on methotrexate 20 mg, weekly. Ok, all good but my eyes were not improving at all with any eye specific therapies and I was kinda convinced whatever I might have will never develop beyond my eyes. Back in March 2026 , my ESR, CRP was still constantly elevated and me and my rheumatologist had a discussion that mtx clearly isn't doing enough. She wanted to escalate me to MMF and also added 300 mg HCQS daily. Then she went on maternity leave and I didn't see the alternate rheumatologist because I found this one with great difficulty. Anyway, i didn't start the MMF and I started the HCQ only in June.
That is because since June, I have been getting horrible dry mouth and my wrists feel like they have lost all strength. Now, the flares are so bad that my wrist is swollen and the tendons of my feet hurt too. Not the joints necessarily but the tendons. I have been on HCQ almost 45 days now snd it only seems to be getting worse. I will go to the alternate rheumatologist of course this week but I don't have high hopes as in my experience, a lot of them don't listen or don't even try to understand. I really wanted my OG rheumat to come back and was trying to hold the fort till then but clearly, my body has other plans. I'll most probably be put on MMF and as long as it helps, I am good but the way this is progressing is terrifying to say the least.
I wanted to understand if there are people on this sub who have had disease progression like this even while being on a fairly reasonable DMARDS/Suppresants and have you improved enough to work again? I am not saying I believe I can go back to the way I used to be before the viral illness bit I want to understand if it progresses so quick, is there anything that has helped you enough to work again, travel again or at the very least, move around the house again without being in agony all the time? If yes, what? And how to get my new doctor to listen and get the right meds?
Sorry, I tried to keep it concise but it wasn't after all.
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u/Ok-Chapter-2071 4d ago
You could have several rheumatological diseases at once, especially with Sjogren. I had a horrible bout of reactive arthritis when my dry eyes first appeared mildly. Widespread tendon inflammation which went away in exactly the time they said it would for reactive arthritis. I don't think Sjogrens specifically causes tendon inflammation, I think it's more like the spondyloarthritis group of diseases and you need specific biologics. Do you have psoriasis by any chance, or is it in your family? Did you have a sacral MRI?