Anyone had problems with mycophenolate?

[alice_sportyauthor]

I have read posts from people who have found this very useful and not had issues with it, but has anyone had problems because I feel I'm not tolerating it well, but then I think maybe that is the Lupus !?!

I am having problems with feeling sick, diarrhoea, dizziness and headaches.

[Purpletop]

How long have you had these symptoms after starting myco? You should tell the person who prescribed it if they go on for more than 3-4 weeks, say. If the symptoms are severe you should ask for the drug to be stopped for a while and re-started at a lower dose - by the way, what dose are you at now?

[alice_sportyauthor in reply to Purpletop]

I started on 500 twice a day, told the nurse I didn't like it but went up to 750, then managed two weeks on 1g twice a day then went back to 750 because I hated it. Going to phone the help line next week, as my next nurse appointment got cancelled and they haven't sent me a new one yet.

[Purpletop in reply to alice_sportyauthor]

You should have started at 500 mg ONCE per day, then gradually increase to avoid side effects, no wonder you're suffering. Definitely call them - I'd stop for a week, then start again but at 500 mg once per day for 2-4 weeks, check the blood, then up to 1g per day for a month, etc. Good luck.

[alice_sportyauthor in reply to Purpletop]

Thanks, I'll phone them Monday.

[Sarah74]

Hello

I had problems and the doc switched me to Myfortic Acid which is basically the auger coated version also split taking it throughout the day and eased the stomach problems.

The mycophenelate made me loose about a stone