Mycophenolate mofetil - longer term experiences?

Hello everyone, I developed ITP three years ago despite already taking immunosuppressant medication - 20+ years earlier I had a liver transplant for autoimmune hepatitis. To prevent rejection, I have been taking tacrolimus (Prograf). My experiences during my early days with ITP were much like those others refractory to steroids but responsive to IVIG have described here. Thankfully, my platelets have been stable and usually 150 or better for the past 2+ years, thanks largely to the addition of mycophenolate mofetil to my list of meds. I saw my haematologist last week. She was very pleased with everything and doesn't want to change any of medication now. However, she is concerned about the potential risks during the longer term associated with taking high levels of immunosuppressants. I need to take tacrolimus for my liver but she wondered whether my mycophenolate could be reduced. I will raise this issue at the liver transplant clinic, but as part of my "research", I'd be interested to hear from people here who have been treated with mycophenolate, both in terms of their ITP and any major side effects or complications associated with this drug.

6 Replies

  • Hi, I have been on mycophenolate for over 3 years and have not had any side effects. It has normalised my blood count and given me the chance to stop worrying about what my platelets are up to. Nicky

  • I have been on it for 3 months without any side effects. I am a first grade teacher was very concerned about my immunity, but went into summer without even a cold!

  • I was treated for about a year and a half, depends on the dosage - e.g. in my case we thought that 500mg would still hold my platelets normal whereas normally it's twice higher amount. I was told that I shouldn't be longer that 4-5 years on 1g and more if I remember correctly.

  • I have taken MMF for nearly 4 years and it has worked well. My current dose is 500mg every 12 hours. All blood samples have been fine. After originally having some digestive problems I have no apparent side effects. Steroids gave me some really nasty side effects,so I am pleased they did not work for me. I have not been told of any maximum time for using MMF but transplant patients may be on much higher doses ,together with other potent medications for many years.

  • Thankyou everyone for your very helpful replies and best wishes.

  • I am on 2 x 500mg in the morning and 1 x 500mg in the evening. Works for me :)

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