Hi everyone, I got diagnosed with ITP in August 2014, never even new what a platelet was before I was admitted into hospital with a count of 4. I was started on 60mg of steriods but it was apparent very quickly that they were not working so was slowly weaned off them thankfully as they made me feel so ill. So they then gave me a round of IVIG which worked for 6 weeks and then levels plummeted again, So back in for another round of IVIG, again this worked for temporarily but due to liver damage caused by the Omeprozol I was taking when I was in the steroids they could not try me on any new medication till my liver had recovered so had another round of IVIG. My liver is now functioning normally and I have just had another round if IVIG and they have also started me on MMF, has anyone got any advice on this drug, side effects, how effective it is and success rates? I have been on it 3 days now and apart from feeling nauseous that is the only side effect so far. They have said the next step if it does not work would be Rituxen, but am just going to wait and see how I go on MMF and hope that it keeps my levels stable.....I have been gluten free since September and whereas I am feeling a lot better for it I am not sure it is having much effect on my plaletlets levels yet but maybe this can take time!

13 Replies

  • From what I understand MMF isnt as common a treatment and only about a %60 success rate in leveling numbers out. Rituxin worked for me 4 time in 10 years with over 3 years remission each time .I have no spleen and had chronic refractory itp.

  • I have been taking MMF for almost 4 years with the main adverse effects being on the digestive system and the fact that I am immunosupressed . For me it has been an excellent drug,but not everybody responds to it. I get a regular hospital blood count every 4 to 8 weeks. The initial problem is that it can take about 4 months to start working. My regular dose is 500mg twice a day and with counts about 90 to 110. I have long since given up having a "normal" count or coming off the drug, but who knows with ITP. Please read the warnings,and avoid too much sun.

  • I have been on MMF and it worked very well, though I relapsed when the dosage was significantly decreased. I had a bit of hair loss and dry nose, that's it I think. I was then put on rituximub which works for now for a year but may relapse anytime now.

  • I have been on MMF for two and a half years and it has stabilised my count. I am not aware of any side effects.

  • My daily dose is 2 x 500mg in the morning and one 500mg in the evening. The only thing that i dont like about it is having to be careful that i take it on an empty stomach at least two hours after eating and when I have taken it I have to wait an hour before eating. Doing this twice a day can be hard.

  • Hi sachmo16. Everything you have just written is exactly the same a my history. Nothing worked, steroids mmf , ivimg, rutaximab and so many more I cant remember. The only thing that has worked is romiplostim injections. I pray that it will carry on working. You are tied to going to the hospital every week or if your lucky every other week (like me this week). Ask your consultant about it, it worked for me . All the best and good luck

  • Thanks everyone for your replies, glad to hear that the side effects are minimal on MMF - i am currently on 250mg twice a day and then this is going to go up in two weeks to 500mg twice a day so hopefully this will work but will ask my consultant about the other treatments. Can anyone tell me the risk involved with taking Rituxin - i was told by my consultant that if you are unlucky and your body reacts to the Rituxin that this can be fatal - has anyone heard this before? I have read a few posts on this site about Rituxin and seems that it has worked for alot of people.

  • When I was on Rituxin, each infusion was preceded by a hefty dose of Benadryl to prevent an adverse reaction. The first infusion left me completely knocked out; I was warned to have somebody drive me home. The other three infusions were easier.

    I think all the drugs available to treat ITP are at least a little scary. It helps to have this group to field questions and get more information.

  • Nicky, bearing in mind what I said about MMF and my digestive system side effects, is that the reason for your MMF/ eating regime? Derek

  • Sachmo16,

    I haven't tried MMF, but I did have a round of Rituxin over a year and half ago that seems to have stabilized my count for now. My haematologist told me that some people have had steady counts for as long as five years after the infusions. The medicine *did* leave me with much lower energy levels that linger still, but like you, I did not tolerate the Prednisone at all well.

    Good luck to you. I hope you find a tolerable solution soon.

  • Sachmo16

    I am sorry that I cannot offer any advice on MMF as I was never treated with it. I did have 4 weekly doses of Rituximab early on in the course of my treatment and fortunately I did not have any side affects at all but unfortunately it did not have any effect on my platelet levels which remained below 5. The advice given to me was that the effect of Rituximab stays in the body for about 12 months and I am scheduled for a large array of blood tests in mid Feb 2015 to check that everything is OK as it will be 12 months since I finished the last transfusion. Romiplostim (NPlate) was the wonder drug for me that got my platelets back to a safe level and gave me time for my body to go into remission.

    All the best.

  • I have now been taken off the MMF as my white blood cell count fell too low and my liver function scores were too high, very frustrating as was only on it for a week so not going to be able to know now if it was going to work. They now want to put me on ritixen - but am really worried about the risks, and my consultant does not know much about it so I am not very confident, does anyone have any experience with it and the risks involved?? Do I have any other treatment options? Done steriods, IVIG, and MMF. ThAnks

  • Hi sachmo16. You have just written exactly what I went through when I was first diagnosed 3 years ago. All the the same treatments, gluten free. Nothing worked and then they gave me Romaplostim injections and it worked . Its an injection in your tummy every week. Ask about it . I know every person with itp is different, but you sounded so much like me I had to comment . Good luck. Oh yes also, look at serotonin, when you dont have platelets, you dont have any where for the seratonin to bank . Thats why people get depressed . Im on seratonin tablets from my doctor and within 2 days of taking them I felt 100% better and ready to fight this condition . All the best .

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