Mycophenolate anyone?

Hi

I haven't been here for a while so "hello" and hope you are all well

I have finally made a decision and decided to try mycophenolate (sp?) after speaking to a new consultant. Has anyone else used this for ITP? Any side effects? How long did it take to work?

Thanks

It is CellCept
pdsa.org/treatments/conventional/immunosuppressants.html

Good luck!

I have used CellCept, but not for ITP. Some people have few side effects and do just fine. It can take a while to work (weeks to months), so it will require some patience!

Hi Katsim.
Yes I have been taking Mycophenolate Morfetil ,MMF, for just over 2 years, My counts are fairly stable at about 110,000, but it take almost 4 months to start working. Problems caused are minor with the digestive system and some headaches. But my immune system is suppressed and I get more colds in the winter,and had shingles. Another problem is with the sun and increased risk of skin cancer. Outdoors I use a sun screen, avoid large crowds in the winter, make sure that food is not contaminated, get all the dead vaccines injected subcutaneously., and wash hands with antibacterial soap. ITP being what it is people can react very differently and many not at all with no reponse.But MMF frees me up from those all too regular hospital checks and gives me freedom. CellCept (mainly myfenax )here in the UK may not work for everybody,and can stop working. At present I am on dose reduction from 2g/day to 1.5g/day so we'll see how it goes. Some people can even come off MMF with success.
Good luck, Derek

I used Cellcept for a couple of years around 2004-2005, then went back on it again this year.
Insurance hassles in 2012 put an end to my getting Promacta, so I opted to go back on Cellcept...as it is only a $10 co-pay and needs no special authorization from the insurance company.

I only take 1 gram a day of the generic brand. That keeps me in the teens (13k-19k).
Side effects are not too bad. Took a couple months to settle in, but it's okay.
I would not recommend Cellcept if you can afford Promacta or Nplate, but it does work.
.

Thanks all - I didn't realise it was cellcept - thanks for the link and extra info. My consultant wants me on & off it quite quickly - already talking about tapering off in September if I've had a response. My count is hovering at around 40 but only whilst I'm on the contraceptive pill - it drops as soon as I stop taking it & I want to get pregnant. Cellcept is one of the options that means hubby & I can try just a few weeks after treatment stops (obviously only if it works and stays stable though! I know this is a long shot!) In an ideal world I would prefer nplate, but I'm not allowed it whilst talking of pregnancy.

It's good to know that it can take a while to work but that it can work really well. I was hoping to see results in 4 weeks time, but knowing it could take longer gives me a more realistic outlook. Hopefully less tears if there is no rise in 4 weeks.

So far I'm tolerating 1g a day well. When did your symptoms kick in if you got them? Was it immediately? Or when you raised the dose? I'm going to 1.5g next week and 2g the week after.

Hi Katsim,
The time it can take for MMF to raise the count to a level with which you can lead a " normal life " can be long. I was about 4 months before a stable count of about 30k was reached and about to give up. It took almost a year to reach the current stable level. I think that the initial response of Imuran can be similar if it is going to work. Most of the worst side effects were in the first 3 months. The immunosuppression is permanent and dose dependant, but that aspect should stop when the treatment stops. MMF is a powerful drug used in transplant treatment after the transplantation .Your blood should be checked regularly to test for side effects of the drug. My haematologist would not go above 2g/day..Because we do not all behave in a similar way to ITP treatments I am now in unchartered waters regarding dose reduction, but would like to get about 50 / 60k with the minimum dose, but will settle for 40k (as I get tired below that) if possible.
Derek

Thanks for your experience Derek - it's good to hear you're heading in the right direction

Despite what everyone on here is saying, I spoke to my consultant today and he said he would expect to start seeing results in another 3-5 weeks. Don't worry - I have much more faith in real people's experiences than in one consultants opinion. Besides, I now have two consultants (because I'm being difficult about treatments lol!) so I will just ask the other what he thinks

Last week my count was 41, this week it is 34. I completely stopped steroids last week. I still got upset that my count had dropped, even after I knew from you lovely people it would take a while to work. & knowing that 34 really isn't that bad!! Does anyone have a spare dose of patience lying around? I'm getting really p***ed with all of this*

*with apologies to people who have been going through this for much longer than me and have a much tougher time than I've had!

vaughanderek wrote: Hi Katsim,
The time it can take for MMF to raise the count to a level with which you can lead a " normal life " can be long. I was about 4 months before a stable count of about 30k was reached and about to give up. It took almost a year to reach the current stable level. I think that the initial response of Imuran can be similar if it is going to work. Most of the worst side effects were in the first 3 months. The immunosuppression is permanent and dose dependant, but that aspect should stop when the treatment stops. MMF is a powerful drug used in transplant treatment after the transplantation .Your blood should be checked regularly to test for side effects of the drug. My haematologist would not go above 2g/day..Because we do not all behave in a similar way to ITP treatments I am now in unchartered waters regarding dose reduction, but would like to get about 50 / 60k with the minimum dose, but will settle for 40k (as I get tired below that) if possible.
Derek

Just an afterthought, Derek have you reduced the dose at all at the moment? Or are you still on the full 2g? What is your current count?