I would be very grateful for anyone sharing their experience with Myfenax treatment (mycophenolates). I am on 1g for about 3 months, off prednisolone for 7 weeks and discovered that my platelets have dropped from 185 to 99 over these 7 weeks (I am still taking 1g of MMF each day). Doctor increased to 1.5 g starting tomorrow.
Thank you
If it is not too cheeky can i ask why you have been put on mycophenolate, is this a new type of tretment for ITP are they hoping the platelet count will go up on this, as we are at our wits end as my daughters count is being so resistant to any treatment, the usual treatments haven't had any success she has tried eltrombopag and now romiplostin and neither have helped, her count remains low at 3 so any information on another type of drug would be gratefully appreciated.
What treatments have you tried with your daughter?
Hi, I think my doctor's logic was the following: I respond well to prednisolone, and MMF acts similarly but without prednisolone side-effects, hence worth replacing. My count fell when they tried to reduce prednisolone, so they had to increase it back to 5mg and add MMF. A month after my count was up again and they started reducing prednisolone, keeping MMF. But now not sure if it's going to hold or slowly go down again.
HI Ic12345 I am currently on Mycophenolate and take 2.5g each day. So far it has not stablilised my condition. I have been on the drug since the 12th July this year and am now on the max dose they are comfortable to give. NickyD
really, so do your platelets still fall to very low levels often? Or has it improved the counts a bit at least?
Well before I was on the MMF I could have a count under 10 and then a couple of weeks later my count would be in the high hundreds.I would say that the very high counts have come down and the single figure counts have gone. My last six blood tests have shown a count of 25, 290, 436, 68, 36 and yesterday 67. I go in for bloods usually twice a week. I told my consultant that I just want stability. But I have changed my view on what I want since being on the MMF. What I want is not to crash and end up in A&E on platelet transfusions. It sounds like you still have a way to go with the MMF regarding the increase in dose. Have you any side effects apart from the normal frustration?
I see, that's probably good news then? My only target is also that it doesn't crash down to single figures, the rest I could live with.The doctor told me last time that 1g was a very low dosage but good that it works for me. Apparently it doesn't work 100% so now we have to increase, will wait and see as you are saying...
No, I didn't notice any side effects apart from the ones still holding from prednsiolone (e.g., I suddenly have a strong reaction to even a drop of alcohol, my cheeks start burning and go red, but I had it after prednisolone previously too). And you?
I have slightly loose stools - I can live with that.
The highest dose of MMF that they will prescribe is 2.5g ie 5 x 500mg. I have asked for a higher dose but was told that they have never prescribed above that amount for ITP patients. So, I take 2 x 500mg in the morning with my penicillen (splenectomy) and then 3 x 500mg in the evening with my penicillen.
I had several side effects from the high dose of prednisolone, eating everything in my sight, a change of personality, being manic and not being able to sleep. I turned into a horrible person and spent all my time apologising. It was very unpleasant. I stopped the steroids in March and am slowly losing weight. I have been told they take a year to get out of your system and you should carry a card to say you have had steroids in the last 12 months. I wear an SOS bracelet when I go out of the house in case I am in an accident - so they know I am taking drugs.
Hi NickyD, back in April when my daughter was first diagnosed she had prednisolone, immunoglobulin, she has had various pools of platelets, Rituximab, Vincristine, Transemic Acid (although she doesn't seem to be a bleeder), there were a couple of others but I can't remember the names, I have it all written down, and romiplostin and after about 3 months her platelets went up to 166 although we are not sure which of the above worked. In august her platelets suddenly dropped for no reason to 0 and as the doctors thought it was the Romiplostin that had worked the last time they decided to try her on Eltrombopag (the oral version) , this didn't work so romiplostin injections have started again an unfortunately there is no improvement at the moment. She has been for an indium scan and its not her spleen that is the problem so a sleenectomy would not do any good. So as you can see I am looking at and trying to find out what others have been given and to what success. As you know yourself though no two ITP sufferers respond the same way. Her count yesterday was 3. Thanks
Hi Lindylou Wow you have been through the mill. I too have tried many different treatments that did not stabilise my count. I asked for a referral to Barts Hospital in London and saw Dr Drew Provan. He put me on Micophenolate that same day. I had been on Romiplostim but he said it caused the platelet count to be very erratic. I have been trying to come off Romiplostim but my count keeps going up and down so I have not yet been able to stop the injections. I strongly advise you ask for a referral. I was told by Dr Provan that micophenolate will stop my count dropping to zero and so far that has been the case, but I only have two and a half months of experience with the drug, so have yet to be convinced that it will keep me above single figures. Do you keep a chart of the count and the medication given? I am on my seventh different treatment and have got used to the "wait and see" culture with ITP. Where do you go for treatment?
Gosh, that's a lot of treatments! I relapsed in March after many years and only had prednisolone followed by MMF. What was the reason they tried Vincristine? That's a bit extreme
Hi Nicky D, my daughter was originally treated in our local hospital but when she became really unwell in April was transferred to Edinburgh Royal Infirmary, where she was for 6 weeks. she was discharged and then went back under the care of our local hospital which gives her excellent care and her haemotologist is really good, she has since been in Edinburgh Royal Infrimary again and a couple of weeks ago was under the care of Dr Catherine Baggot at Glasgow Royal Infirmary who was happy to send her home on a really low count (0) and on eltrombopag, she is now under the care of our local hospital again but as stated the eltrombopag hasn't worked and now it looks like the romiplostin may not be working hence the reason i am interested in the mycophenolate. Much as she has the low count she is very well in herself and her rash is clearing up but the count is still low hence the fact we are all perplexed, we are trying to treat the patient and not the count but it is hard as on such a low count because of the type of work she does she is unable to go back to her job.
Ic12345 hi she was given Vincristine back in April time as she was really ill and was bleeding and that it may help. I have it all written down in a book and keep it all up to date regarding treatments etc, we also keep a not of her platelet count and her haemoglobin level.
Hi lindylou
Drew Provan is THE top guy in the UK for ITP. I wonder if he does phone consultations? There must be a way of speaking to him without having to go down to see him. Push for the referral. Drew said that he would always put his patients on Micophenolate before putting them on Romiplostim.
When I had a count of zero I was put in a room on my own and told to stay put. There was no way that the hospital would have sent me home - that does surprise me.
We cannot get eltrombopag in England it has not been approved by NICE. What work does your daughter do?
she is a care worker for the elderly so can't take the chance of getting a knock. She is trying to live a normal life but I get quite paranoid in case she takes a knock with her count being so low.
I was diagnosed with chronic ITP in May 2011. The prednisolone did not work but the IVIG was very effective but briefly as expected.i had all the bad effects described baby Nicky for the steroid. In June last year Israred with 500mg per day and slowly to MMF to the current 2g per day.My counts are currently stable at 80 to 90.At the beginning I had some minor digestive problems but I am cautious since being immunosuppressed.The MMF took until October2011 to kick in.I shall think about other treatments when I have to.Rituximab can also take a long time to work and give really good counts. The TPO's are maintenance drugs and I would go down these routes if I have to, but splenectomy would bo the last option on my list. Kered
Sorry about the spelling mistakes in mu last posting but the message went as I was checking it
Thank you for your response ic12345. Yes my MMF treatment did take a long time to start working and we were about to give up. It is a powerful immunossupessant used in preventing some transplanted organs but it has been used for some time in the UK and a lot longer in the USA (more detailed discussion in the PDSA.org web site.)Hope that's useful and Drew Provan at Bart's in London has used it with success for several years. But we are all different in our responses to treatments and unfortunately relapses.
I used mycophenolate for about 14 months. It kept my count high while on it but I had side effects, joint pains and nausea, so stopped it and my count then fell. It can take up to three months to start working.
thanks for sharing!
ITP since May this year. Currently on Revolade
Recently diagnoised with ITP
Problems with n plate
Trying out different vitamins
Platlets will not come up despite every possible treatment
