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?
thanks
Lewis
0 likes, 5 replies
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lewisanderson42
Posted
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.
Lewis
lewisanderson42
Posted
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.
Lewis
abdu33045 lewisanderson42
Posted
Of blood count.
How do u feel with cellcept?
lewisanderson42 abdu33045
Posted
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.
Amandaten lewisanderson42
Posted
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