Any one else on colchicine and it stopped work... - Behçet's UK

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Any one else on colchicine and it stopped working

samhawks profile image
7 Replies

I was given colchicine in feb and it was great for two months no ulcers but then they can back in my mouth and once again I was only about 3 days clear of them before another one , Now they are back to normal in my mouth with 5or 6 of them at one time and never with out one and now ulcers are coming back everywhere else too on my body Have hospital on 26 th of sept will I be given something else to try ??

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samhawks
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7 Replies
devonshiredumpling profile image
devonshiredumpling

Hi Sam

I've been on colchicine since diagnosis about 7 years ago and it still works for me. When I did try to stop it fairly recently, my ulcers came back with a vengeance and I felt quite ill. For me, colchicine is one of the better drugs - it only helps the ulcer situation for me but that's what I was told it was for. I was never told it would help with joint pain and other stuff, as some members of the forum seem to have been.

tinkmbs profile image
tinkmbs

Hi Sam

I was on colchicine for 5 years it stopped working although never really had breaks from ulcers both in mouth and below. I have now been given trental 400mg 2 daily been on then now for 4 weeks and seem to have started to work this is this first break for me since October 2006 amazing hardley any side affects at all.

Good luck with your new treatment if your given new !

Sue xx

Jazzy21 profile image
Jazzy21

this has happened to me. Seeing rheumy Iin 2 weeks and hope she does something.

I'm on Colchicine, had a spell when dropped dose down and ulcers came back, but since been on 150mg per day of Azathioprine and 2mg of Colchicine together have only had the odd ulcer, which heal really quickly. It might just be a case of you needing your dose tweeked to get you back on track.

C x x

billi profile image
billi

Hi I stayed on Colchicine for 7 years nonstop with almost complete remission and only mild flares for 3 years afte stopping all,meds. Over last 3 years Bd flaring all over again and after discussions with docs etc am now starting back on Colchicine again.

Huga billi

g0rok profile image
g0rok

Hi Bill

like yourself I was taking Colchicine, and when it started to become ineffective , I was prescribed Methotrexate which has reduced some of my symptoms greatly, particularly the erythema nodosum on my legs and ankles.

Michja profile image
Michja

Hi Samhawks,

My daughter Jaida started on Colchicine 3 years ago it worked well for six months easing the ulcers, joint and head pain a little. She was able to play with her little friends and ate with only two ulcers not a mouthfull. I loved Colchicine for that alone. We increased dosage but the runs happened so further medication and steroids were needed.

I'm not sure if it is the same for you, but my daughter ended up developing more BD symptoms the following year. Is it colchicine not working or BD getting stronger in the body? I think the only one to help is your specalist, thankfully they helped us.

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