Hia, I'm new to site and Behcet's. Been reading blogs. As it's been helpful I'm venturing a question! Anyone taken CellCept (Mycophenolate)?

I've been taking for months now but it doesn't feel like it's making a difference. Consultant says to give it time, but not giving an indication of how long. I was diagnosed in Sep 2011 and steroids made a quick improvement. I then went on azathioprine and was able to reduce steroids. I really felt a positive change but it didn't agree with my liver. I've had to increase steroids since taking Mycophenolate and also seen a resurgence of symptoms that had gone. I'd appreciate hearing anyone's experience please? Thanks.

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  • Hi, my daughter currently takes this one but its not brilliant, it kind of helps with the Erythema nodosum but not totally, but doesnt help with the mouth and genital ulcers, she is currently waiting to go to St Barts in London at the end of the month for Anti TNF

  • Hi Tamirra, thanks for taking the time to reply. I appreciate it.

  • Hi, I did try CellCept last year and it didn't agree with me. Tried Thalidomide for nine months and am now on Methotrexate. It's only been three weeks but I feel better already (hope it lasts)

    Lesley

  • Hi Lesleyg, many thanks for replying - much appreciated!

  • Hi Godles

    I started with Prednisolone and Azathioprine and then moved onto Prednisolone and Cellcept which my Liver didn't like at all + I just felt ill all the time and it wasn't really helping all the symptoms anyway. Both of these were better in terms of the fatigue, ulcers and Follicolitis, but no good at all for the neurological symptoms.

    I am now on Methotrexate, which is very slow to kick in but my liver seems pretty o.k with this. However, I feel sort of very fatigued and depressed all the time, particularly on the day I take it and the day after. Don't seem to be getting off of first base really.

    As you can see, some seem to help some symptoms but not others and affect each person differently. It is really a metter of trial and error with each of these and how it will affect you.

    Hi lesley

    I am glad you are beginning to feel better....fingers crossed and hope it lasts and improves all the time.

    Andrea

  • Hi Andrea

    I was about to email the specialist to say how good I felt and thought I had better wait. The fatigue has come back pretty badly today, I might have overdone it Thursday however it was just sitting at the computer. Also, everyone has told me it takes several months to kick in (not days).

    Thanks Lesley

  • That's the problem when we feel better we can overdo it.

    I find mental work can be more fatiguing than physical sometimes. My spelling, and speech/memory/concentration difficulties are pretty bad and obviously much worse when fatigued....and so I tend to use this as a marker for me overdoing it.....stress is even more catastrophic.

    I am now just coming up to 6 months on methotrexate and have been on 12.5mg a week for the last 2 months. I still can't say I have had the lasting improvement I would have liked although I am better than before, when I wasn't on any Immune Suppressant.

    I have episodes where I think I am really improving and then it doesn't seem to be consistant or last long. I keep telling myself it is still early days and my neurologist said it could take at least 6 months to get a good improvement.

    This maybe similar with you.

    With Cellcept and Azathioprine the response for me was quicker but they both didn't help all the symptoms or reduce the Inflammation.

    Andrea

  • Hi Godles;

    You know the indications for treatment uses. I never used them. Colchicum and Urbason Retard 8 Mg (methylprednisolone 8 mg) used. The disease did not improve the findings. I suggest to you as health professionals, the findings to neglect serious treatment.

    I wish life without pain.

  • Hi I too took cellcept for awhile and ended up needing something stronger - cellcept didnt help much! but it seems to be one of the first meds they try! i am now on 150mgs Immuran along with others and it is really working. Hope this helps

  • Hi all, I started with Methotrexate + steroids. Although the steroids help in the short term, I was reluctant to continue these in the long term. Unfortunately the Methotrexate didn't agree with me, it effected my chest and caused a really bad cough which can be one of the side effects. Change to Azathioprin was ok in the beginning but my bloods are quite low and have to be monitored regularly. My white cells are low but they are not sinking any lower. Went to see consultant yesterday she told me I now have secondary fybromyalgia she also said if I didn't have BD then I would not have had this other illness.. Great!! chronic pain constantly. I am now being recommended for Anti TNF treatment. Just a waiting game now as it takes a goo few months for this to start.

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