My experience with Colchisine

I have been diagnosed with BD 3 months ago after 7 months of search. I started taking colchicine and together with a balanced diet and moderate excercise BD is almost gone ,only if I push it with my training a mild version appears for a couple of days, nothing like what I had before where I enjoyed a 2-3 day break between flares at best.

The drug itself had initially minor side affects affecting the digestion system ,after a month it was starting to annoy a bit, but started taking acidophilus and even that single side affect is now gone. I am a new man

I thought people may find this interesting as its worth trying just colchice before going to the more intensive treatments.

9 Replies

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  • Hi Sharkie78, this is really interesting, thank you! Can you advise me what dose of colchicine you have found to be this effective please? Will.

  • 0.5 mg

  • Hi sharkie,

    Good on you for giving meds a chance to work. After about 14 years if suffering I too was put on colchicine. Of course it had some side effects, all drugs do but sometimes we just have to persevere,

    I stayed on colchicine for 6 years and after the initial settling in period I was mor or less symptom free for all this time an upto 3years after stopping due to a small GI bleed. Now 4 years on I am getting a really bad flare and after discussions with my Prof have decided to give Colchicine another go.

    So please persevere and enjoy the remission and relief to be able to get on with your life.

    Good Luck a d Health.

    Hugs and Smiles

    Billi

  • It's good to hear that this has worked for you. I am supposed to take 3 tablets a day, can only just tolerate two. It hasn't made any difference to me but I guess we are all different. Reading your post though gives me hope and I might just try and persevere with 3 a day. Thanks for posting its always good to hear something positive...

  • Hi

    I am on cellcept but still have tirrible ulcers effecting my mouth tongue throat and my lips swell,i can barley swollow my own saliva

    i can now tell before it all breaks down completly that i am heading for a flare, the texture of my mouth feels different. this is when if i take colchine in time the ulcers are not so severe and heals quicker. After trying seriods,antivirals and antifungals it was like a miricle to me.I wonder if I took them all the time like many of you seem to it would work even better.I can but up with the side effects if it helps my mouth.

    Kind regards Carol

  • Hi sharkie78, Its so nice to read of someone who has had a positive result with colchisine. My experience was very bad from the start it made me itch from head to toe for two weeks, even though I had stopped taking it after one week .

    I've not found anything that works other than steroids and pain relief as of yet.

    best regards MFG

  • I too was on colchicine for many years 3 tabs a day 1.5 mg . It helped my ulcers and helped with my elevated temperatures and arthritis . However it began to affect my liver and I became quite ill . I stopped taking it and all my behcets symptoms returned with a vengence. What I'm saying is that colchicine is a fantastic drug for our condition , but also take care with your liver. I had no side affects for many years except for the odd bowel symptom so it is worth taking but Im not too sure about long term risks. Since I've come off the drug my liver is now back to normal.

  • Thanks Witton. I find this information really useful , my doctor told me nothing About side affects on the lever, I will investigate this further. I also do agree that colchicine doesn't solve the problem, I am seeking for a way to resolve BD without chronic medication

  • Hi sharkie I have suffered this since 1984 and found colchicine to be one of the less aggressive drugs to take. You seem to be doing all you can to keep yourself well . Unfortunately it is a condition that needs these drugs to give us a better quality of life . I have found that Non of the drugs for behcets is completely side affect free but they have allowed me to achieve things I could not have without them . I have found that as long as we are adequately monitored the risk is much lower. I think a forum like this is valuable because its easy to feel you are alone with this illness I really appreciate reading everyone's posts Thankyou for bringing this topic up sharkie its been helpful to see other people's experience of this drug.

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