Mycophenolate

[Georgehb]

Hi everyone, I wonder if anyone else has been on mycophenolate for a few months, but managed to change to something else with less side effects?

My main side effects are joint aches, muscle aches/cramps, but the most worrying is that I can lightly brush against something and I get a patch of blood under the skin. In addition, I have to be careful how I eat as I can easily get blood blisters in my mouth.

Any recommendations/experiences please?

Many thanks

George

[Scaredy_cat]

What is the mycophenolate for? Have you had a transplant?

[Georgehb in reply to Scaredy_cat]

Hi, yes, post bone marrow transplant.

[Tortina]

hello

I think you need to report all this to your Stem Cell Consultant . Presumably you attend a clinic for stem cell patients .

It’s very important that you discuss this and any changes with them . I take ciclosporin and some of the side effects have been similar to those you describe . I believe mycophenalate is prescribed sometimes when you have an unrelated donor. I know it is in the hospital I attend .

It’s important you follow the advice of a consultant who specialises in SCT . These medicines are prescribed to prevent , minimise or eradicate any gvhd which can be serious .

It’s a fine balance with anti rejection meds post transplant and levels need to be discussed with your consultant .

Everyone is different and reacts differently to medication !

Best wishes

Tortina

[Georgehb in reply to Tortina]

Hi, thank you for your reply. I have been in touch with my consultant and waiting for a reply. I am also due a face to face on the 29th.

Kind regards

George