Hi, I have scleroderma among other things. The most concerning of which is lung fibrosis.

[titanicus]

After consultations between my 2 consultants, (chest and rheumatology), they have decided to prescribe me Mycophenolate Mofetil (CellCept).

I have 100% trust in my medical advisors, however, I read with trepidation the 8 page accompanying document about possible side effects.

Starting with 1 tablet a day for 1 week, week 2....2 tablets a day, progressing to 4 tablets a day. I need to have blood tests every 2 weeks at hospital for the next 3 months.

Has anyone had dealings with this medication, and can anyone allay my concerns regarding the frightening aspects of side affects?

Any positive information would be greatly appreciated.

Thank you.

[stilltruckin]

Apparently it's an immunosupressent used to prevent the rejection of transplanted organs, no wonder there are so many possible side-effects. It's use for your condition is 'off-label'.

Looks like it could be helpful (lung fibrosis is a form of Interstitial Lung Disease): ncbi.nlm.nih.gov/pmc/articl...

More general information: nice.org.uk/advice/esuom32/...

[Fennella02]

Hi. I have been on Mycophenolate for nearly 2 years for UCTD/Lupus. I was extremely nervous of starting immuno-suppression and am pretty sensitive to the side effects of drugs. I also had anemia and leucopenia as part of the disease process. I hope it reassures you when .i say that I have not noticed any side effects from this drug. My blood counts have increased and stabilised, I have had no increase in infection nor stomach upsets etc. Obviously we are all individuals and respond differently but Mycophenolate is one of the costlier DMARDS and generally well tolerated. I hope you feel better once you are settled on it. Best wishes. Clare

[titanicus in reply to Fennella02]

Thank you for your kind replies. I take great solace in your comments and feel more at ease with the situation.....No more thinking about what if I grow another head and start howling at the moon!

A sense of humour is everything.

Take care.