Hi, I am new to this. I have systemic sclerosis,I've just been put on mycophenalate. Has anyone had this drug and how did you react to it?

[Dionne-F]

Did you get any benefit and how long did it take to work?

Thanks

Dee

[lakemon]

Yes. I have been on mychophenloate for almost 2 years now (2000mg a day). It takes a while for you to see any improvement. Mine was two months. My Plmonary Funtion Test are now stable. They were low but have improved (up three points). Remember that any improvement is great. Stablizaton is the key. I take mine in the morning before breakfast (1 hour before) and in the late afternoon. That is the biggest problem with this drug. You must take it 1 hour before eating.

[Carolanne]

I have been taking Mycophenolate 500mg x 4 daily for 18 months I have just been having tremendous hot flushes (I am past the menopause) my specialist is reducing the dose by one tablet daily for 2 weeks then by a further tablet. I have only been on the reduced does for 4 days so have not felt any benefit yet.

[living-the-dream-ssc-ray]

Hi I had this back in 1999 for 5 years 2g / day. I decreased the dose in March 2004 but had to give up my 60 hour / week job by the end of June 2004 !

It definitely stabalised my diffuse scleroderma symptoms including the leather like skin ! I now and since then, only take medication for my Raynauds, other than some omeprazole now and then.

I do have a daily strict skin care regime though !

I used to take 2 tablets in the morning after breakfast as I had quite severe stomach involvement, and then 2 tablets before going to bed.

My next option had it not been successful was stem cell therapy !

I hope you have the same success with it !

~ living the dream

[richardroz]

I have taken Mycophenolate for about 1 year. I can't say I've noticed any grand differences to my well-being. However my hair began to fall out in July resulting in total baldness by mid-August so now wear a wig. This coincided with being diagnosed as having a fairly under-active thyroid. Also have lost 7 kilos in weight (approx just over a stone) in about nine months. Whether or not all this can be attributed to Mycophenolate I've no idea.