Mycophenalate

[salmagal]

Hi have been taken of romoplostim 3weeks ago due to side effects my count has dropped down to 19 this week my consultant wants to start me on mycophenalate can anyone tell me anything about this I'm a bit apprehensive about starting a new drug would be grateful to here from anyone who is on mycophenalate thanks salmagal

[NickyD]

Hi Salmagal

I have been on MMF for over a year now and it has been a blessing. I was attending hospital 3 - 4 times a week. At my last appt my consultant said he would see me in 3 months. What a difference that has made to my life. I think one of the common side effects is a dry mouth. I started on 5 tablets of 500mg and am now down to 3. As my dose has decreased this side effect has lessened. I think my hair may have got a bit thinner but not as much as it did on the Rituximab. It has been brilliant for me to be on MMF. My count is around 80 - 100. My consultant wants me to reduce my dose some more but I moved house three weeks ago and told him I would not change anything while I had a house move to deal with. No doubt when I go back he will lower my dose again. I can only say it has been a breathe of fresh air to be on this drug and to start to get my life back to some kind of normality. I hope that helps. Nicky D

[salmagal in reply to NickyD]

Hi NickyD I can't tell you how truly thankful i am for your reply as I was really worried about starting this new treatment I feel a lot more confident after your reply I well remember the roller coaster you were on with romoplostim and so glad to here you are doing well I'm booked to start mycophenalate on Thursday so will let you know how i get on thanks again salmagal

[NickyD in reply to salmagal]

I went down to Barts Hospital in London to see Dr Drew Provan. He put me on the MMF right there and then. In fact he wrote out the prescription on his pad in the meeting, gave it to me and I went to the pharmacy in the hospital and started it the same afternoon! It does not work for some people and I am never going to say it is 100% full proof for me. But I went from 3 - 4 times a week, to once a fortnight, to once a month, to every six weeks and now, for the first time, am on three months. I started the MMF at the beginning of July 2012, so it has taken over a year to get to this point. Drew Provan said I would only be going into hospital once every six months to a year. I did not believe him because my count was so up and down. I will want to know how you get on and if you want to email me direct you can get me on [e-mail]. Keep me posted. NickyD

[kered in reply to salmagal]

Hi Salagmal,

I have been on MMF for just over 2years. It took almost 4months to really start working No big side effects except for digestive problems early on but they have gone.Hair has become thinner. Was on a max dose of 2g per day for about a year and a half, then 1.5g for 2 months with a count of about 156. The dose was reduced to 1g/day about a moth ago and counts last Thursday were 86. Another CBC this week so I hope all is stable so dose may be lowered again ,or raised as appropriate. All in all a good drug for me and given me freedom from all those hospital appointments. Down side is there is a small chance of getting skin cancer so use sunscreen about SPF if you are fair skinned. Good Luck, Derek

[salmagal in reply to kered]

Hi kered thanks for reply glad your doing well with mycophenalate I start on Thursday so hoping I get a good response I'm being given immunoglobins as well since count has dropped due to coming of romoplostim good luck with your counts thanks Sarah

[kered]

Hi Salmagal,

My count was at 8 when I started the MMF treatment, so I was given the IVIG tratment while on 30mg / da prednisolone. The pred did not work for me,but 5 days after starting the IVIG infusion my counts were at 242, ..My MMF treatment started then with500mg per day building up to 2g/day and the pred was slowly tapered off over 9months. IVIG treatment usually give only temporary increases in platelets which decrease over a month or so.This may buy enough time for the MMF treatment to stop a complete decrease in the count. My lowest count was 30 and it seemed a long wait for the MMF to really work.

My IVIG tratment was over 2days as an outpatient (about 6hours a day .I was monitored closely for any adverse reactions to the infusion,but there were none.I did have slight flu like symptoms for about 3 days but nothing serious. I took in a funny book to read to pass the time away. All the best.

[salmagal in reply to kered]

Thanks kered this really helps I have tried IVIG before back at the start I had quite bad headaches so my consultant says there are 3 types so they will try another one which is why I'm going to have overnight stay for the first one so here's hoping yes will take a book to pass the time thanks again for taking the time to respond as this is what gets you through this rollercoaster journey good luck with yours Salmagal

[kered in reply to salmagal]

Hi, Just another update on my MMF dose reduction Sarah. Today my count was 96,so going back up and 3 weeks to my next appointment.All other blood measurements were fine. Again good luck on your MMF journey, Derek

[salmagal in reply to kered]

Hi kered well I can't believe it went into hospital this morning expecting to start mycophenalate and get immunoglobins my consultant came into tell me I could go home count was at 45 so has went up on its own they would not do any treatment he's not sure if its remission coming of romoplostim so still on watch and review for now so keepin fingers crossed really hope your count keeps stable what a journey we are on Sarah

[rjsmyth in reply to salmagal]

Keep us posted - I am really interested in this as a fellow Nplate taker.

[salmagal in reply to rjsmyth]

Hi rjsmyth go for bloods in the morning then will phone for count on Thursday afternoon so will let you know I've still no bleeding or bruising so really hoping for good result

[salmagal in reply to salmagal]

Hi just had result of my count its at 62 this week so up again that's amazing came of romoplostim July 25th

[rjsmyth in reply to salmagal]

Great news - please keep us updated as to your progress.

[Ltinny in reply to salmagal]

Happy Dance!!!! Thank you for posting your good news!

[artytransplantee]

Hello Salmagal, I was diagnosed with ITP just over a year ago, in my mid-40s. After not responding to prednisolone in hospital, and two courses of IVIG four weeks apart, I started taking MMF, two 500mg tablets twice a day. It got my platelet count back into three figures, where it's been all through 2013. I'll add, though It's still early days and I'm taking other medications which are probably helping in combination with the mycophenolate, even though they didn't prevent me from developing ITP in the first place. I had a liver transplant in the late 1980s. Since then I've been taking a low dose of prednisolone (5mg daily) and the immunosuppressant tacrolimus to prevent my body from rejecting the donor organ. It was one of the doctors at the liver clinic who recommended the mycophenolate. They stopped the tacrolimus for a couple of months late last year, which didn't agree with me. That's another story, but my platelet count was less stable while I was off that and on mycophenolate alone. Side effect-wise, there are quite a few drug interactions / contraindications for MMF These include antacids, such as the over-the-counter digestion relief, Rennie. As others have said, I also need to take care in the sun.

[salmagal in reply to artytransplantee]

Hi artytransplantee you've had a rough old time just back from ITP clinic count at 45 this week so a drop of 17 however consultant happy for me to go med free for 1month then review have to have bloods done in 2 weeks so really on watch and alert

[Ltinny]

Salmagal, I can understand being apprehensive about a new drug. I am the same way. As for mycophenalate, I have been on it 1000 mg a day for 8 years. It has worked wonders for my lupus. I did not have ITP until 3 years ago. But as far as side effects from mycophenalate....it was a breeze. I take it 1st thing in the morning on an empty stomach with no problem. I am hoping if you decide to go with it, it will be the same for you