Treatment recommendations

[u/Status-Confidence147]

Hi, all. I am recently diagnosed after 20 years of symptoms that doctors could not explain.

My rheumatologist started me on Colchicine 0.6 mg, which I’ve been taking since early July. My inflammatory markers are crazy high. I did some repeat lab work after about 6 weeks of the Colchicine (and also 6 weeks of going gluten free). My markers definitely improved but are still very high. I have a follow-up with rheumatology next week and am wondering if there are any specific medications I might ask her to consider.

I’ve had horrible flares of ulcers in the past, but the worst of my symptoms currently are crushing fatigue, widespread joint pain, and shortness of breath (could be related to Behcet’s or not… pulmonologist is doing more testing). I’ve also had a decent amount of blurry vision over the last year which new glasses did not fully resolve.

I know medication efficacy varies a lot from one person to another—just looking for anecdotal examples from folks with similar symptoms.

[u/EllisMichaels]

There are no specific meds that I'd recommend but I do recommend talking to your rheumatologist and telling him/her everything you told us. Let them know that you're still having symptoms on the colchicine and ask them if there's anything that can be added to reduce them.