Mycophenolate Mofetil to treat NS

Posted , 3 users are following.

my consultant wants to treat my frequently relapsing nephrotic syndrome with a combination of prednisolone and mycophenolate mofetil.

Does anyone have any experience of mycophenolate mofetil?



0 likes, 5 replies

Report / Delete

5 Replies

  • Posted

    I am now taking a combination of prednisolone and mycophenolate mofetil (MMF) to treat my nephrotic syndrome.

    dose of MMF is 1 gram twice a day for at least two months - possibly continuing for a year or so.

    dose of prednisolone is 15mg on alternate days for at least two months, then i will continue reducing and hopefully come off the prednisolone altogether.

    How do i feel? So far, so good. I'm due to have a full blood count (and other blood tests) in about 10 days and then every two weeks after that to check that the MMF isn't having a detrimental effect on my system.

    I've always struggled with the side effects of the prednisolone, especially on my concentration and short term memory. Apparently the MMF can have similar side effects, however i've yet to notice any significant change.

    The MMF is taken twice a day at 8am and 8pm. Taking a dose at 8pm means you'll be asleep while it's doing its stuff and so you won't be affected by it which is good.

    With a thoroughly suppressed immune system, i'm taking extra care against infections, colds and coughs, and taking a regular vitamin supplement to boost my general health.

    Finger crossed things continue to go well and that i stay in remission.


    Report / Delete Reply
  • Posted

    I've been on MMF for over two weeks now.

    I've had blood taken for a full blood count to be carried out and await results.

    Side effects:

    dry, itchy skin. So far it's localised to my head and specifically where skin is thinnest (eyelids, behind ears, scalp). Solution - moisturise as much as possible, and don't scratch.

    Mental. My brain always felt dizzy and scrambled while on doses of prednisolone, particularly while reducing. My brain goes through phases, particularly after eating, when it feels totally scrambled, and i end up feeling totally disconnected from my surroundings. Tedious, however it passes.

    Otherwise, everything's ok.


    Report / Delete Reply
  • Posted

    I am experienced with microphelete (cellcept) with predislone. I tried prednislone for 10 years then for a year I was prescribed cellcept 500mg. While taking cellcept you should have a close monitoring

    Of blood count.

    How do u feel with cellcept? 

    Report / Delete Reply
    • Posted

      Hi Abdu,

      honestly, i feel really good!  I take a multivitamin as well as cod liver oil supplements daily.  I also take calcium and another drug to deal with the resultant bone thinning from so many years on prednisolone.  And i try and keep really active, and avoid the obvious problems associated with a suppressed immune system.  My consultant recently advised me that all his other patients who he has weaned off MMF, have relapsed again which is a great shame.  So for me, i'm going to carry on with the MMF until my consultant confirms that it will be detrimental to me.

      Report / Delete Reply
  • Posted

    Hi Lewis,

    I have had NS for the last three year. The first treament for me was 60mg Steroids, then I relapsed once I got down to 10mg. The consultant then put me on 30mg steroids and cyclosporin. I managed to get down to 7.5 mg steroids then relapsed. Them we tried 30 mg steroid with mycophenolate. That got me down to 15mg of steroids and then I relapsed so tried lavesimole and steroids. I have just had and 8 week treatment of cyphosphamaide(chemo). I am now only taking 2.5mg steroides and am in remission and have been for 3 months now. The only problem is the last treament can make you infertile. Bless you!

    The only way to find out if mycophenolate will work for you is to try it.

    There will be a treament out there that suits your body. Everyone is different so what will work for one will not work for another.

    Good luck

    Amanda x

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up