Other diagnosis colchecine

[Thought-I-had-lupus]

Hi ya all. Had any one else been dig odes with something else first. And then this lovely syndrom? Also has anybody taken colchecine for this. Please I am afraid to take. When I was given medrol I felt better. I don't know what to expect.

[Thought-I-had-lupus]

Sorry diagnosed.

[Juhan]

Hello, colchecine really helps me alot for the ulcers in my mouth and genitals, you can get some diarrhea from time to time but its all worth it.

[m82girlygirl in reply to Juhan]

How lonh did it take before it started working?

[rooser1 in reply to m82girlygirl]

For me a few months. I had to decrease my dose in the beginning bc the diarrhea was unbearable.

[Kiwichris]

I take colchicine with very little issues apart from a bit of diarrhoea on and off and loosing quite a bit of hair but it is totally worth it for how much better it makes me feel and controls the ulcers - mouth a down below.... ! A much kinder drug to our systems than a lot of them out there....!!!!

[Hidden]

Yes I was diagnosed with something else first. I think quite a few of us were, some incorrectly. I take colchicine for ulcers and skin. It made me feel nauseous for a few months but that wore off eventually. When I came off it for a few months last year they all came back very badly.

[m82girlygirl]

Your doctor's are working for you to help you feel better. Don't be afraid to ask them a bunch of questions especially about meds.Colchicine didn't work for me. All I got was diarrhea.

Now in on Imuran and waiting for it to work.

Medrol and prednisone are good drugs because they work but actual are bad drugs to be on long term

[Thought-I-had-lupus in reply to m82girlygirl]

Thanks for answering. I love medrol prednisone I feel the beat. But coming off feels like heck. So not good for me. I can't believe I was diagnosed with three different things and lupus seems to fit the best. But because I did not have a Poitier tear. But a percentage of lupus patients do not test positive. So I will try the Meds and see thanks. N

[Jaxxi]

Hi, I was diagnosed with CFS/ME in 1998 and with Behçets in 2013.

I have been on colchicine for a few years now. Like you, I was scared to take it. But then I had a spell with lots of ulcers, scalp sores, headaches and joint pains. It went on for months, so I decided to try the colchicine.

At first it gave me stomach ache and diarrhoea, but after a couple of weeks the joint pains seemed a lot better, and I was slightly less tired than usual. So I decided to stick with it, but reduced the dose from 2 tabs a day to 3 half tabs morning, noon and night. Spreading the dose like this helped the tummy problems and controlled the joint pains even better. After a few more weeks the scalp sores and ulcers were less, but I was still getting them to a certain extent. So I increased the dose to 4 half tabs at 3-hour intervals. I stuck with that for a few months and then my stomach seemed to tolerate it quite well, so I started taking 1 tablet morning and night (less to remember!).

It took about 6 months to get the dose up and feel the full effects. I am glad I did - it does make quite a difference. I still get ulcers but they are small and rarely break through and join up like they used to, and my joint pains are lots better, though they haven't disappeared completely. I still feel 'flarey' about once a month but the flare-ups seem to pass a lot more quickly. The times when my episodes last more than a week happen once or twice a year now rather than every couple of months.

Hope this helps xxx

[Thought-I-had-lupus in reply to Jaxxi]

Yes it helps. And I always forget all the symptoms I do have including the scalpsores.

[rooser1]

Colcrys is great for long term management. It is also a first line treatment after prednisone. Everyone always feels better on prednisone (medrol) but it is not good long term and the symptoms will always come back with a vengeance.

You can start with half a dose (1 pill per day) if it is too rough on your stomach. I had to do this... I never increased it as it kept most symptoms at bay. I only increase when I see certain sized ulcers or have unexplained joint pain. It took a few months for me to see the difference.