Behcet's Syndrome Society
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new meds not working

been on methotrexate a month now also been put back on coloccine was on that for 3 years with no effect my ulcers have again returned after a week this is now normal for me I used to get 2/3 weeks before they returned not now all other symptons are worsening as well my cosultants are aware of this and they are doing there best they are going to put me on something called t n f has any one else been on this and if so has it helped this is one horrible condtion it has changed my life and my familys life my wife and daughter have been brilliant but I get embarrased having to have help a lot of the time I just wish I could get a little bit better and not be a burden to my family and friends 90 percent of the time

2 Replies

Hi, i was on methotrexate and it didnt work for me, we started the tnf infusion infliximab a year ago and yes its working definately for ulcers i have the occasional oral ulcer but thats it. All the other conditions that come with bechets have calmed down too, for me i have a chrons diesease component and that is still active. But we are positive that i am heading in the right direction.i am not in remission yet and i have been given the go ahead to have it indefinitely.

However it comes with side effects. I got diagnosed with fibromyalgia a month after starting it and also had an allergic reaction to it late last year. So you will have to be closely monitored and still take it easy... But i choose this over the bechets any day! I hope it works for you!

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pleased its working for you I have fibromyalgia as well think I'm working my way through the medical dictionary I have about a week at a time now when I'm a little better but most often I'm immobile except in the house just hoping new meds work its a horrible illness that's for sure but pleased your feeling better


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