Colchicine

[Courtneyleex]

Hey guys,

I have been on colchicine tablets now for close to a month. I'm on 1 tablet twice a day.

My genital ulcers have cleared up, however they did so without the use of the medication, i still have recurring mouth ulcers that seem to go away, but as soon as they do another one pops up.

Any reason why this may be happening still? Thought this medication was supposed to keep ulcers at bay.

I'm scared because if it doesnt stop the oral ulcers, the genital ones may return!

help !

[ABon2001]

Hello. I've found that the colchicine keeps the other ulcers at bay but not the mouth ulcers although it did help mine be less severe..... I have no clue why this happens. Hang in there!

-April

[chlovak]

Hi there,

It could be that colchicine on its own may not be enough to control your symptoms. It definitely wasn't for me, and I know many other Behcet's sufferers have also had limited (or no) success with colchicine. There are many other medications that might be more effective for you, either in combination with or instead of colchicine. For some people (myself included), the only med that will reliably and quickly control and prevent ulcers is Prednisone-- but unless you are already taking it, I would consider it to be a sort of last resort, because the side effects are horrendous and coming off of it can be extremely difficult. If you're seeing a rheumatologist, I definitely recommend calling them or scheduling an appointment, and tell them about your unresolved symptoms. It's also a good idea to keep a journal of your symptoms, and bring it along to your appointments. Keep in mind that many drugs do take several weeks to "kick in," however I think with colchicine it shouldn't take much longer than a month to know how well it works for you. In the meantime, while you wait for appointments and new medications and the like, I suggest asking your doctor for help controlling the pain and discomfort. There are prescription mouth rinses that can help a lot-- one is viscous lidocaine and numbs your mouth so that you can eat, brush teeth, talk, etc., and another one is called "Magic Mouthwash" which also has a numbing effect and may help ulcers heal faster. There is also a steroid paste your doctor can prescribe that will work on both oral and genital ulcers-- it's prescribed under the name "triamcinolone oral" for me. Best of luck and keep asking questions!

[Bigmac37]

Hi - I had little to no luck with colchicine and I took it for almost a year. Just stopped it recently and haven't noticed any change. It could be that it is just not effective for you. The only thing that has completely cleared up my ulcers was Infliximib. Good luck.

[rooser1]

For me genital ulcers and oral ulcers don't have to run hand in hand. I had many episodes of extreme oral ulcers that had nothing going on downstairs. Sometimes, I had both. Everyone is different. Personally, it took me about 6 months to a year to see a difference. When I did continue to get a few oral or genital ulcers, the size and duration were smaller- is this also how it is for you? I went from having huge painful ulcers that lasted over a week to something small that went away within three days- for upstairs and downstairs.

So all in all, I like colchicine but for me it took a while. I think you need to keep working on stress management because your last sentence of how you didn't want them to come back sounded like me after my first horrible flare. I was paranoid. I used to cry after getting one tiny ulcer thinking, "oh god here we go again." Meditate, walk as much as you can, breathe deeply and keep a mantra. Mind and body have to work hand in hand.

tl;dr-i agree you may need something else with the colchicine-try stress management first.

[Teapartyatthemalfoys]

I am on the same boat with you! Okay in my experience, I have been on colchicine since 2012 KEEP TAKING IT. I have forgotten to take them regularly for a few weeks and had a huge flare of genital ulcers. Stress makes Behcet's worse so if you get stressed while off the meds you will have the worst time ever. For genital ulcers use a zinc cream on them.

As for mouth ulcers I get them all the time and the colchicine doest do much for them. Talk to your doctor about it and look through the forums for remedies. When I was younger I would take a q tip dipped in water and alum salt and rub it on the sore. Hurts a lot but it helps get the bacteria out.

[Mrsfh]

I've just started colchicine and I've heard from others that it can take up to 6 months to really kick in.also that seems a small dose as I've been prescribed 1 mg twice a day.hope it starts to work,for you and me both!