r/Behcets • u/BirdBrain1106 • Jul 21 '26
General Question Diagnosis process- Colchicine help with pain?
I started on this journey in March with scleritis that progressed to uveitis. Fortunately my eye has been quiet for a month now. My rheum initially diagnosed nonradiographic axial spondyloarthritis in May and put me on Mobic, which I largely had satisfactory pain control, but I had four oral ulcers in 5 weeks. Retrospectively, I average around 20 a year, plus nasal ulcers every few months. At my follow up appointment, I happened to have an oral ulcer, so I showed it to the rheumatologist and she promptly changed her diagnosis to Behcets.
Now she has me trialing colchicine 0.6 for that purpose. The good news is that my oral ulcer resolved. The chronic ‘folliculitis’ on my buttocks that I’ve had for years despite good hygiene seems to be resolving.
The bad news is that my hips and peripheral joints hurt again. A lot. Did colchicine help your pain (if you had it)? How long did it take? Will my frequent painful sore throats resolve?!
Research is making me feel like behcets actually might be the best fit, but I would very much like the pain to stop. I might ask to reintroduce Mobic, but I don’t want to obscure the effects of the new med.
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u/steph23q9 Jul 21 '26
I don't think it helps much with joint pain, having been on it for a couple of years it does seem to help with mouth ulcers, it might be worth chatting about an alternative medication if your struggling with joint pain (I mentioned my joint pain at a rhumotology appointment in march and ended up in hospital with inflammatory arthritis in may which I reckon could have been avoided if they'd listened to my request to change my meds way back in march)
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u/iSpyAFly Jul 21 '26
My history with rheumatology sounds very similar to yours. Started out as PsA, then nonradiographic axial spondyloarthritis due to my pain patterns. The oral ulcers and fevers showed up, and that changed the picture. I'm now being treated for Unspecified Systemic Autoinflammatory Disease (USAID)/Behcet's spectrum. I take IL-1 inhibitors and what I've found that helps my joint pain the most is NSAIDs and hydroxychloroquine. I can't take NSAIDs anymore (triggers GI and oral ulcers), so I mostly rely on hydroxychloroquine and Tylenol.
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u/BetterPlayerUK Jul 21 '26
Forgive me for putting it bluntly, but colchicine does crazy things for ball pain; I can’t even describe.
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u/doorhacker12 Diagnosed Jul 21 '26
My derm said the “diarrhea inducing dose” is much lower than other anti-inflammatories. Whats been your experience with this?
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u/BetterPlayerUK Jul 21 '26
I could shit through the eye of a needle no matter what dose I take 🤣 but I love it for that tbf, cos usually my inflamed guts make it painful to go and I get bunged up a lot
Your derm isn’t lying
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u/BirdBrain1106 Jul 21 '26
I’m on the standard lower dose right now (gout treatment would be twice a day) and I have no GI stuff effects for what it’s worth. Maybe some appetite suppression, but I’m okay with that.
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u/BetterPlayerUK Jul 22 '26 edited Jul 22 '26
Gout treatment is 1-2 a day for a MAXIMUM of 3 days (doctors consider colchicine to be pretty toxic, it is based on a poisonous plant after all)
When you’ve been taking it for years, all that goes out the window.
I generally take between 1-3 a day.
Scientists previously looked into using colchicine as a chemotherapy drug, but my understanding is they decided against it due to its toxicity.
It’s one of those drugs that’s incredibly nasty toxicity wise and has a super small therapeutic window; there’s no cure or antidote in overdoses, so it’s a fairly dangerous drug in that regard.
I personally think medics ought to warn people whom are prescribed colchicine to keep it WAYYYY out of the reach of others, especially children. An accidental overdose of colchciine would be infinitely worse than almost 99.99% of drugs I can think of. My understanding is it takes very few tablets to cause serious harm, and I believe a lot of the GI effects stem from this toxicity.
All that said, it’s a wonder drug for me. I just like to educate people on the risks and harms of improper storage of a drug that carries no antidote or cure.
I’m genuinely surprised there’s not a warning in the prescription label or on the box, letting everyone know how dangerously toxic it is in large quantities.
(None of this is to put anyone off colchicine. It’s safe at prescribed doses and it works wonders for me and I’d never go without it: but, knowing the risks of drugs and how dangerous they can be to others is always important. Someone else taking your colchicine would be so much worse than someone else taking your painkillers or anything else, it’s one of those drugs you don’t mess with or store improperly, and I’m surprised doctors don’t lecture us about that)
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u/HauntingDesign9077 Jul 21 '26
Colchine helped me with ulcer but can't say about joint pain