I have started taking Mycophenolate Mofetil for treatment of Wegeners

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I have been having treatment for Wegeners for 6 weeks and I started to reject Azathioprine at 100mg I would vomit exactly 2 hours after taking it so they have stopped it and started me on Mycophenolate 500mg slight sore throat and feeling totally shattered its hard to tell the difference because Wegeners makes you feel so awful anyway. Has anyone taken Mycophenolate and had success or side effects? I am also taking Prednisalone at 20mg my life side feels weak face feels numb? 

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  • Posted

    Just keep taking your meds Tara I know how your feeling but the treatment now is far superior to what it was 20yrs ago when I was diagnosed with wegeners the manifestations you can get with WG are horrendous but with the new meds today you'll escape them keep your chin up xx
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    • Posted

      Thank you Anni I am back at hospital on Tuesday I suppose it is early days with meds smile x

       

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  • Posted

    I have been taking mycophenolate for a few years now and I have not had  a flare since I started. I did have the same side effects as you with azathioprine but no problem  with mycop/late. The way you feel is probably down to the steroids which always  make you tired. I felt the same as you when first diagnosed, but seem to be in remission now. It does take a bit of time to get under control but you will get there.
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    • Posted

      Hey there do you mind me asking how long you feel it took for you to get it under control and are you on any steroids still? I know we are all different but I do like to get information from other follow Wegeners . I have been ill for nearly a year and in total I have had about 4 months off work and had to have a break from my Dipolma. I would go about 3 -4 weeks hit a brick wall off again virus ear infection sinus Fess operation you know never ending . I miss work and doing stuff with my kids .The consultants said they will get me back on track.fingers crossed. Great to hear you have not had any flares keep well. smile
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  • Posted

    My 14 year old was on 60mg prednisolene, and they are now reducing it every few weeks whilst increasing the MMF, she is on 500mg of MMF twice a day. She feels very tired most of the time, is trying to do mock GSCEs after not having been at school for 4 months, so is being examined on things she hasn't been taught. Sometimes she gets a sore throat for a day and then it goes. The doctors are hoping that she will feel less tired soon, but they gave me the impression it was the prednisolene rather than the MMF that could be making her tired.
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    • Posted

      Hello Shannon how are you doing? The tiredness is so frustrating I know how much prednisolone is your daughter taking now? I am on 20mg I still get tired. It will be ok I know it's hard for you to watch you baby going though this. The GSCEs will get sorted. Big hug smile
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  • Posted

    Prednisolone does not make you tired if anything gives you tremendous energy, however it's a catabolic steroid which releases cortisol in turn which breaks down muscle tissue, so you eventually weaken but at 60mg should be superman/superwoman
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