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.

I am somewhat new to dysautonomia… have had episodes of orthostatic intolerance since I was a kid but have been suffering pretty consistently with something like POTS for the last few years. I also have hEDS and some symptoms of MCAS, though immunology will not give me the diagnosis because my serum tryptase was normal.

Anyways, I don’t drink much these days, maybe 2 drinks a month at the very most. Well Saturday I had a single Bellini with friends and I’m feeling it two days later. I’ve been sweating profusely even when sitting still in the AC. My stomach feels twisted in knots and nauseous. I’m also on several sedating medications because I’ve been a lifelong insomnia suffer and last night they worked about as well as a sugar pill. I could not sleep well and woke up this morning with my eyes slightly swollen shut, looking like I’d come off a weeklong bender 😭

Does this sound familiar to anyone? Anything you’d recommend I do to speed up my recovery back to baseline? I can’t say for certain it was the alcohol, especially as it’s also just turned warm and humid here but I’m certainly not eager to drink again after this experience. FWIW, I’ve tolerated alcohol fine in the past and even seem to have a high tolerance despite not drinking heavily. 🍸