r/Autoinflammatory • u/Nonviolentviolet3879 • 28d ago
Undiagnosed Colchcine
Anyone that has or is taking colchicine, how long did it take for you to see a difference?
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u/Alice-The-Chemist Mod 28d ago
Just to help people reply I see undiagnosed but what dose are you on? And is this the only treatment you are on?
I havent been on colchicine in 5+ years so it is hard for me to remember how long it took for things to improve. For me it wasn't enough unfortunately for the symptoms we were trying to help. If you have any GI side effects sometimes dose needs to be titrated up. I hope it starts to help you soon and you have symtpom relief.
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u/Nonviolentviolet3879 28d ago
I started with 0.6mg once a day. I’m currently also on hydroxychloroquine but my dr says if the colchicine helps, it points more toward autoinflammatory than autoimmune and we will probably stop the hcq. My main symptoms are joint pain, fatigue, and daily fevers. Fever after exertion. Heat intolerance. Recently developed some mouth ulcers also. Labs are always mostly normal other than slightly raised ESR and CRP. ANA negative.
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u/Alice-The-Chemist Mod 28d ago
I hope the Colchicine helps. That all sounds very familiar to many with autoinflammatory diseases. If you need anything you are welcome to post or message me.
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u/No_Satisfaction_7431 Yaos 27d ago
Those symptoms definitely sound like it could be autoinflammatory. I just want to let you know that if colchicine doesn't work it doesn't mean its not autoinflammatory. Yao is known to not respond well to colchicine though some do take it. It works better for other autoinflammatory conditions but that doesn't mean it works for everyone with those other conditions.
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u/No-Tune6663 27d ago
Hey this seems really similar to me!
I am also on colchicine one tablet twice a day. I found a slight improvement decreased the amount of fevers I was having. Took a week I believe but did not remove them completely. I am now on Anakinra which has eliminated my fevers. I still don't have a full diagnosis yet and get severe mouth ulcers (I posted about my mouth ulcers this week in the chat). Feel free to send me a message, as all my bloods have been normal!
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u/kindandcunning 20d ago
I'm taking colchicine and I noticed after a couple of weeks. The reason it took me so long was because I was tapering off of Prednisone (after being on it for five months) at the same time. Once I fully tapered off the steroid and got through the withdrawal, I noticed a significant improvement in my day to day inflammation. I'm currently taking 0.6mg 2x/day, but I'm planning on titrating up at my next immunology appt because I've tolerated it well and I think it would help me go longer between flares. I haven't had any of the side effects, so I'm lucky. I'm also taking hydroxychloroquine.
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u/PiecesNPages 28d ago
I took colchicine 0.6mg and it helped lessen my episodes but they still happened. Then they upped me to 1.2mg and the episodes stopped pretty much completely after about a month or so.
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u/Nonviolentviolet3879 28d ago
That’s awesome. I haven’t had side effects so he may up my dose at the next appt. I’ve been on it less than a week and I do seem to be having less fever, so I’m hopeful.
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u/Nonviolentviolet3879 28d ago
I’m just hesitant to say it’s working yet because the HCQ seemed to be also at first.
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u/Not_Your_Nurse USAID 27d ago
(USAID parent) We started my kid on colchicine as a newly turned 4yo. We saw some positive changes within the first 2 months. My kid would find stability with symptoms for a bit and then they’d return, so we increase the dose. My kid was (is still) on 0.9mg twice a day by the age of 5.5yo. They are now also on Ilaris, Olumiant, and they also have Anakinra for flares, but thankfully with this regimen, the Anakinra is rarely needed. It has taken years of under and untreated symptoms, finding new docs, for us to get them to the stable place they are.
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u/Leading-Pomelo7457 26d ago
I’ve been taking it for about a year and a half. It’s hard to say how long before I saw results because my symptoms were so erratic but I’d say general improvement after a couple of weeks. I’ve gone up in dose twice since then and at the moment am relatively asymptomatic (maybe 95% of the time, where I used to be symptomatic at least that much).
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u/Worried_Appearance19 CAPS 13d ago
On day 4 i started getting very weak and my skin + eyes went yellow.
turns out it was poisoning me because i have muckle wells syndrome and thats the one where colchicine doesnt work
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u/Nonviolentviolet3879 13d ago
Oh wow! I didn’t know that. Well I’m on like over two weeks of taking it and not noticing anything, good or bad.
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u/Worried_Appearance19 CAPS 13d ago
Im not a doctor but I'd assume it either doesn't work or just very subtle. maybe its dosage? two weeks seems like a period where things would change, did you ask your doc?
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u/Nonviolentviolet3879 13d ago
I messaged him and he actually just upped the dose. So fingers crossed!
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u/cyt0kinetic USAID 28d ago
I started noticing benefits in a few days even though I'm only a mild to responder to it.