Colchicine

[Char_123]

Hello,

I’ve finally persuaded my GP to let me try colchicine for my mouth ulcers while I wait for a referral, and they’ve given me enough for 6 days. I’m 4 days in haven’t had an ulcer, but feel like that’s really not enough time to know if it’s because of the colchicine or just a co-incidence.

They have said if I want more I can only take it for a maximum of 2 weeks at a time - does that sound right?

Thanks

[Ayea]

No, thats not really right for the treatment of Behcets. They are probably thinking of the protocol used for treating gout, the condition Colchicine is most often used for.

I believe Behcets patients usually take it long term if they tolerate it well.

I take 2x500micrograms a day. I take 500micrograms with breakfast and 500micrograms with my evening meal, roughly 12 hrs apart. I have been taking it for over 5 months and I don't think my Rheumatologist has any plans to stop it if I continue to tolerate it and it prevents the ulcers (which it does amazingly well).

Some people can't use it because it causes gut pain or stomach upset, but if you have been taking it for 4 days without issue, you are probably going to be fine :o)

Remember not to eat grapefruit or things with grapefruit juice in when taking Colchicine... this makes the Colchicine much stronger and potentially toxic.

[Oathy]

Good Morning, Been on it now like Ayea same dosage since 2000

one of the best tablets i've used, Some GP's and consultants are a bit worried

about the long term effects like possible neuropathy but in all honesty the consultants

i've seen all agree its a medication to stay on, One even wanted to double the dose

but the other consultant really was not happy with that.

[Char_123]

Thank you both, I presumed that would be the case - did quite like the idea of a magic 2 week treatment that cures ulcers for life though!! If only!

I shall go back and continue to battle the GP

[Islandbechet]

Hello Colchicine is like water for me, I need it everyday not only to prevent the ulcers buts also has lower joint pains and other symptoms, combined with azathioprine, plus a dose of every two weeks of 100,00 vitamine D. THATS IS MY DAILY RUTINE, to be in life present.

[CaliB]

I’m glad if it is working for you they didn’t have any affect against my mouth ulcers how ever when I went to a&e last year they was shocked as I had been on colchicine for 4 years non stop and that was by oral med and and by the bechets clinic I believe long term for bechets patients it’s okay to use as long as it works well or doesn’t have any adverse side affects I’ve tried every single drug that’s currently available to treat my bechets and it just gets worse I’ve been looking into going over seas to get stem cell treatment as in studies it has had the ability to put bechets patients into remission or at worse ease and help to control the disease with out any drugs or side affects. Just be carful if they give you prednisone as that drug as almost ruined my life as well as probably saved my life a couple of times but should be taken with extreme caution.

[CaliB]

also I have to say this the GP is going to be useless in treating bechets and it’s very hard to get referred to the bechets clinic as many doctors have 0 experience or knowledge about the disease I would if like me you have a lot of oral ulcerations push to see an oral medicine specialist I use guys hospital in London and there fantastic if I have any major outbreaks as I can Get an appointment with in a week or so and they can refer you to the bechets clinic as they’ll have a better idea and would of made atleast one referral beforehand so know the process as it’s not as simple as a traditional referral ie from gp to oral medicine and will take time but from my experience I would still ask to me seen under oral medicine as the bechets clinic is once every 9 months or so you’ll see them and they don’t do a whole lot for me anyway but if it’s important to go though the process as it’ll save valuable time and some the treatments to at may not have worked for me may work for you and I hope it does get resolved and clears up as mine have gotten to the point over the past 12-18months of being unbearable