Have You Had Mycophenolate Mofetil (M... - ITP Support Assoc...
Have You Had Mycophenolate Mofetil (MMF) to treat your ITP ?
AnthonyHeardAdministratorITP Support Association49 VotersI have been on MMF for a year now, it has kept my count well over 100. Last count 193 in February. I am on 500mgs twice a day. The only side effects I have been finding are a bit of nausea, tummy upset, indigestion and trouble sleeping (just like the steroids). Just wondered what other people have been finding with MMF. How long do we stay on it ? Do we stay on a low dose forever? Can we come off it gradually ? If we come off it, will platelet counts fall ? Just wondered what other folk have experienced.
My mum is on nplate injection once a week and 500mg MMF & 5gm steroid once a day her count still goes up and down 32 3 weeks ago then 112 and 170 this week. She has been on the above treatment for 8 months count has gone up really high 360 4 weeks ago so injection not given but next week count fall below 20 . Still on the rollercoaster seeing specialist in 2 weeks one treatment by it self does not work she seems to need mixed approach. Mum is 80 years old and other than having ITP is really fit and heathy.
I started on MMF about 5 years ago. It took about 4 months to begin working.I came off it VERY gradually and have been in remission for 15 months without any of the drug and platelets remain quite constant at about 160.Downside was all to do with the the digestive system and being careful in the sun.Using MMF people of mainly Celtic origin with those with fair skin and blue eyes are at risk of skin cancer. People using MMF probably could use the lowest effective dose indefinitely to give a safe count of say 50 bearing in mind the caveats above. Afterall higher doses are used for very long periods in organ transplant patients. Derek
It is working but my count has not gone past 27 since I stopped the prednisolone so I voted no could do with another option maybe? I have the same side effects as you. I have been on it for 16 weeks now but get less side effects with mmf than the steroids and my count, although dropped, is above 20 so relatively happy really.
Have to say that when I was first diagnosed I found your blog extremely helpfull and informative
I speak as a liver transplantee already taking immunosuppressants (Prograf and 5mg prednisolone dialy) when I developed ITP in 2012, therefore my case is more complicated, but MMF made all the difference for me. On MMF, my platelet count has been stable for 4+ years (usually around 160). Previously, my ITP responded to IVIG but not prednisolone. I started off on 1000mg MMF twice a day, reduced to 500mg twice a day last year when my white cell count dropped after a feverish cold. I've still had some lower than normal white cell (neutrophil) counts on the lower dose and my haematologist has discussed reducing my MMF or coming off it altogether. The transplant team have suggested tweaking the doses of Prograf, MMF and prednisolone. I'm hesitant about that as my most disruptive side effect has always been light-sensitve migraine-like headaches (to the point of sunglasses indoors whenever the sun is shining and blackout curtains in my artroom) though that's most likely Prograf as I had this problem pre-MMF and pre-ITP.
I've been on MMF for 17 months and my platelets have been in normal range for the past 16 months. I started with 1000mg twice a day and have gradually tapered the dose (reduced the dose to 250mg once a day a few days ago) without it affecting the platelet count. Keen to come off them but also nervous about the platelets taking a dive if I do. I had tummy problems in the beginning but that got sorted with Omeprazole, reducing the dise and taking the pills with food. No other noticeable side effects, except perhaps being a bit more prone to colds etc.
Moderation team
