I have been on Mycophenolate Mofetil (MMF) since Feb 2016 at a dosage of 2 times 500 mg's per day, and it has kept my platelet count steady at around 100 to 170. I do not take any other medication.
I was diagnosed in 2006 and had previously had good responses from Prednisolone (5 times) and Rituximab (twice) but side effects of both stopped my specialist and me from going on them again at my last relapse in 2016. So we started MMF with good results (thank goodness).
My specialist seems to think that just taking MMF without a steroid like Prednisolone alongside it (even a very low dosage) and still getting a satisfactory response in Platelet count , is quite unusual. I'm certainly not complaining, but just wondered if anyone else is taking JUST MMF and getting satisfactory results ? I'd be interested to hear the experiences of fellow sufferers.
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AnthonyHeard
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I have been on MM for 9 years at 1000 mg and the past year 1500 mg a day. My platelet count is below level, with the lowest being 37 (while on MM) and the highest being 107. I don't know what effect MM has on platelets, and I am on other medications as well. But I never was treated for the low platelets. They have been coming up gradually.
Thank you for your response Ltinny. MMF like Prednisolone and Rituximab suppresses the immune system. Because in most cases of ITP platelets are destroyed by our immune system mistakenly , the idea is that by taking a drug like MMF, Prednisolone, Rituximab or Azathioprine it suppresses our immune system to stop our immune system destroying our platelets. The downside is obviously that if our immune systems are suppressed it makes us more vulnerable to colds, flus, viruses, bugs etc, so we have to be more careful.
AnthonyHeard, yes MMF is to suppress the immune system. I forgot to add that I have SLE as well. So I am on other immunosuppressant meds as well. The reason for my ITP, according to the hematologist I saw who did a ton of blood tests to rule out more serious issues, is that my own system was attacking my platelets. I refused any treatment for it and was already on MMF. I did not have any symptoms with the ITP, just a few bruises here and there. So I opted to take the "watchful waiting" approach and sure enough they did start to come back up. How are you tolerating the MMF? When I first started it I had some gastrointestinal issues, but now it seems fine.
Wishing you well
I’ve been on MMF 500 mg twice daily since Beginning of August 2018 after receiving two IVIG infusions. So far so good
AnthonyHeardAdministratorITP Support Association• in reply to
Great news. So pleased you are getting a good response.
That drug carries a lot of health risks, including increased risks of several cancers. Have you discussed lowering your dose with your doctor since even 50k would be a good therapy goal?
Anthony that's great bro .. I am on promacta and my prednisone is cut to 10mg. down from 60mg .. prednisone no good with all the serious side effects so the promscta so far is keeping me above 50k which is good for me …. stay in touch .. jimmy
Hi, I've been on MMF for about 2 years now on varying dosages from 2x250g to 2x1000g daily.
Previously prednisone which lost its effectiveness, then IVIG with no side effects, but also no big platelet count gain. They wanted me to do a splenectomy, which I refused. After that I received MMF (CellCept).
When I am on 2x1000g I have swollen lower legs and then I also take diuretics (foursemide 40~80mg daily). It has kept my count between 70~200. with a typical dosage of 2x500 mg.
However when I am sick I have to increase dosage from 1g to 2g daily, if not my count drops - last time it was 10 this winter when I was sick (not very sick, but still), and aside from MMF increase I also had to take 4x 20mg Dexamethasone. This was rather unpleasant... not being able to sleep, think, mood swings, heart racing etc...
Hope my experience helps... I am taking a blood test tommorow - hoping for good results and that the MMF will be decresaed...
Fingers crossed that your next blood test reveals a good platelet count for you. Hopefully you might be able to reduce the dosage of MMF a little bit. Pleased to hear that it does work for you, albeit the side effects are sometimes tricky to manage.
I lived for about ten years with a platelet count of between 7 and 20. I was on no treatment, because, after a lot of ummm-ing and ah-ing the Dr decided as long as my blood was in my veins and arteries I was doing ok. (I pushed for this view)
Then I was diagnosed with SLE (Lupus) and put on MMF. I didn’t get on with it very well, dizziness, loose stools, feeling sick etc... The consultant asked me to give it a bit longer and reduced the dose. I’m okay with it now, taking 500mg twice a day. It also means my platelet count is up to 25 to 35 on average now.
Unfortunately, once we have one auto immune disorder, we are more likely to collect others, as I have.
Thank you for you response. Like you I had some dizziness, nausea and general digestion issues to start with. I occasionally get a bit of nausea and indigestion now but things seems to have settled down. Since starting MMF in Feb 2016, I feel that I have at least got something to keep my ITP at bay, with tolerable side effects.
Thank you everyone for your responses. Very interesting and at the same time very optimistic that MMF is working for me and a number of other ITP sufferers too. Like a few people pointed out, MMF does have a number of side effects. As it is an immune suppressant , I am very aware that it makes me more vulnerable to viruses, infections, flus, colds etc.
I am also very well aware that it can make me more vulnerable to developing skin cancer, so I always wear factor 50 sun lotion if it is sunny, albeit I never ever sit in the sun anyway. I always wear a hat if I go out on a sunny day too.
The only side effects that I have had are nausea and general digestive upset occasionally, eg indigestion,
I started on 500mg twice per day of MMF Feb 2016, then reduced my dosage to 500mg once per day then stopped taking it altogether last March. BUT after a month of not taking MMF my platelet count started to drop so I have been back on the MMF at 500mg twice per day since April 2018 and counts very very good. Last count 166 end of March 2019.
I was diagnosed with ITP in August 2017. I had 2 IVIG infusions which did not maintain a raised count, and Prenisolone which on tapering again did not maintain adequate counts. My consultant then put me on 500mg twice a day and then increased me to MMF 1000mg twice a day which I have been taking for a while. Counts have wavered above and mostly just below 50 (during this time my father was ill and then passed away), but a year on after this event, my counts have suddenly jumped to over 90 for 2 successive months. At present my consultant is unwilling to reduce the dosage of MMF. However, I am hoping that IF counts continue to rise, she may consider a reduction in the medication. Interestingly, this month, the pharmacy questioned whether I was ok with a generic version of MMF. If the counts go down next month, I may request/insist that only MMF be prescribed and see if this is making a difference for me. I am keeping a diary so I can see if there are any ITP triggers (positive and negative) but foolishly have not included whether I am on MMF or the generic version. I will now!
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