Behcet's Syndrome Society
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Hi I have just stopped taking Azathioprine after 1 month as my liver blood results say that It is not agreeing with me and now they are starting me on Mmf . Does anyone take this? How do you feel ? I have started on triple therapy mouthwash as recommended by the centre of excellence so am hoping that it will help with my ulcers. One of the main problems I have though is with my ears and hearing and headaches . I have an Mri scan booked for end of March . I just feel really fed up now I am really stressed in my personal life and I am assuming that it is also affecting my condition as I feel really awful, and the fatigue is overwhelming . I feel I don't want to approach my gp anymore because they think I'm either a pain or neurotic!! Sorry for the Moan 😒Xx

1 Reply

Hello there,

Like you, Aza did not agree with me, and now I have been taking MMF for some time. I still have 6 weekly blood tests, but so far , so good with the drug. I have suffered from terrible mouth and genital ulcers in the past, but now they occur very infrequently, and

the joint pain is almost under control, but that is probably due to some of the other drugs I am taking.

Sadly the fatigue is still there. I have found that the only drug that I have been given to make any difference to that was Infliximab. It was like a miracle because I was completely symptom free for two years, until it started to become less efficient and eventually I was taken off it.

You moan away as much as you like. That is what we are here for. We are al in the same boat so we know how you feel.

Anyhow, I hope you find MMF helps you. I know how awful the fatigue is, but try to rest when ever you can.

All the very best.


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