Mycophenolate Mofetil

Evening all! Just a quick question for those of you who take mycophenolate Mofetil (immunosuppressant). I finally got the go ahead to start taking the medication after suffering from infection after infection. So... I wondered how long it took for you guys to feel the effects (good and bad!) 

Thanks in advance and hope you're all doing well xxx

12 Replies

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  • Hi Evine, I have asthma which has being flaring very badly over the last 6 months but is at last beginning to settle again! However I have been on Myco 750mg twice a day for nearly 2 years now for Lupus which I have for 20 years now.  At the beginning it made me feel sicky and headachey but I found if I ate little and often it helped this.  It's also important to have your bloods checked frequently and keep away from anyone who has chicken pox, shingles etc as they really lower your immune system making you vulnerable to all these infections.  Try to stick with them even if you feel miserable at the beginning it does get better and they really helped my Lupus so hopefully they'll help your breathing problems.  Best of luck, Bronagh

  • Thanks for your reply! Can I ask how long it took before you started to feel better? X

  • I felt the effects after about 6 weeks and I've not had a major flare since starting them whereas before this I was flaring about every 6 months and each flare worse than the last one and more difficult to bring under control.  It's also meant I've been able to drastically reduce my steroids at long last! 😊 Bronagh

  • Ah that's great news! Thank you so much for all your help xx

  • Your welcome Evine, I really hope it works out for you, please keep us posted 😊 X

  • Hi Evine, cant say anything about good effect,good effect maybe ll be seen on ctscans and other tests. This drug ll not improve the lung function, it should just stop the progressing of disease. Bad effects: yes, lots of infections one after the other and being sensitive and allergic to perfumes, air freshners and most of the smells. 

  • I hope it passes for you! Thanks for your feedback xx

  • I have been taking it 7 weeks and have no signs of improving my condition yet

  • Thanks Clare - hopefully we'll see some effects soon for us both! X

  • Hopefully, fingers crossed x

  • Hi Evine,

    I've been on Mycophenolate for around 3 years on a dose of 2 grams a day. 4 times 500mg.

    I never really noticed a terrific difference in the way I felt but when my consultant showed me the graph of my inflammatory markers they had dropped dramatically and flat lined from the time I started them.

    I was put on Myco because my immune system was attacking my lungs causing Pulmonary Fibrosis. I have monthly blood tests to check for liver problems that can be a side effect of Mycophenolate but they've always come back ok and I haven't noticed any other side effects.

  • Thanks so much for getting back to me. I have been told this is a bit of a wonder drug so I'm hopeful although I'm wary of my next blood test as my chest is feeling very tight and it's more than likely I've caught the cold my kids have had. Fingers crossed. X

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