Thoughts / experiences of Mycophenolate ?

[AnthonyHeard]

Just looking for any thoughts and experiences other ITP folk have had please . Unfortunately I've relapsed after having 2 and 1/2 years remission from Rituximab.  I had remission of 2 and a half years from 2010 to 2013?then had Rituximab again and got 2 and a half years remission again from 2013 till Feb this year. My specialist is suggesting a third round of Rituximab but m very reluctant as it carries risks I don't want to contemplate.

So another suggestion is Mycophenolate, which I've not tried before so wondered what others have experienced ? Any information would be great. 

I'm currently back on Prednisolone and platelets stable. 

Thank you all

Happy Easter 

[tayloreat]

Hi,

I'm currently taking Rotuxin (had my 3rd dose the other day). How long did it take the Rotuxin to increase your platelet count to a safe level? 

I'm not familiar with Mycophenolate. Is it a strong form of Rotuxin?

[AnthonyHeard Administrator ITP Support Association in reply to tayloreat]

it is not a strong form of Rituxan. Rituximab is the UK name and Rituxan is the US name. It suppresses the immune system just like steroids, Azathioprine, Mycophenolate . The platelet count can sometimes take a while to respond to Rituxan. I responded within a week of having the first dose which is about as good as it can get. But some people can take 2 to 3 months, so it is a matter of being patient. One thing to watch out for is that because Rituxan suppresses the immune system you will be very vulnerable to colds, flus, viruses, infections etc for about 6 months after having the Rituxan so do look after yourself. 

Hope you get a good response. 

[tayloreat in reply to AnthonyHeard]

Wow, I didn't know that I could be vulnerable for 6 months after. I will have to take extra care. Thanks for the tip!! 

Have you tried any holistic medicines such as papaya leaf to increase platelet counts?

[AnthonyHeard Administrator ITP Support Association in reply to tayloreat]

Papaya Leaf a extract sadly has absolutely no positive impact on platelet count. There is no scientific evidence to suggest it is any us at all for platelet count. In fact there are no statistics or research into it to really tell.. What's worse is that for things like Papaya Leaf Extract we have no records either of side effects which are of course kept for regulated official medicine. So it's possible you could do more harm than good taken any alternative medicine like Papaya Leaf Extract I'm afraid. 

[tayloreat in reply to AnthonyHeard]

Thanks for that information, and you're right there is no scientific research to support papaya leaf increases platelet count. I will hold off on purchasing this and find a second opinion as to why my TTP isn't improving with Rotuxin and steroids yet.

[Rafiq in reply to AnthonyHeard]

Hello Anthony,

I am afraid I have to disagree with you. The jury is still out on Papaya Leaf Extract (PLE). I read a scientific paper from the University of Colombo in Sri Lanka which clearly concluded that PLE does boost platelet production. I referred said study to my GP who confirmed that it was a recognised paper and agreed with me to try it. Since taking PLE in tablets form, my platelets have been stable at mid 20's; for me this is excellent as my platelets used to fluctuate between  0 and 10, although for some reasons, I am asymptomatic ( bleeding in gum twice since 2007). I also understand that taking PLE from actual papaya leaves is considerably more effective than taking the tablet form. Unfortunately, in my part of the world (London) I cannot get the fresh leaves. I think, funding permitting, ITP Support Association could look into this natural potential benefit.

Best Wishes.

Rafiq

[scaryteacher]

If your count is above 10k, and if you are asymptomatic, have you thought of no meds? I've had ITP for 20 years, and docs in Belgium and the UK (at Derriford in Plymouth), are happy to not medicate me. My counts have dropped steadily over the years from 60-80k, now down to between 25-45.

[AnthonyHeard Administrator ITP Support Association in reply to scaryteacher]

Thank you for that interesting thought.  Not taking any medication would be the ideal solution but I get bruising as soon as my count gets below 25. If unchecked my counts just plummet to low single figures. They have got as low as 4 which then obviously gets dangerous in terms of internal bleeding.  

[scaryteacher in reply to AnthonyHeard]

Mine have been as low as 15, but I don't get huge bruising. It was just a thought, as I know Sailor who posts on her has counts of about 10 and has no medication.

Good luck with it anyway!

[NickyD]

Hi Anthony

I have been on mycophenolate for nearly three years now and it has transformed my life.  I used to go to hospital 3 - 4 times a week and now I go every six months.  I have had no side effects and think it is wonderful.  Nicky

[janran]

Hi Anthony

I took mycophenolate for a few months. I am really responsive to prednisolone but my count always gradually drops when im off it. We tried mmf to see if it would give better results. Mmf kept my count steady but I did have a couple of side effects. I already have IBS and my bowel symptoms were worse on the mmf also my skin became very photosensitive and I developed a very itchy rash if I went in the sun. Like scaryteacher I do not have bleeding symptoms until the count drops into single figures so we are now using prednisolone for as short a time and as low dose possible. We have found that my count rises well on just 10mg. Its always my preferred option to just have enough treatment to keep me safe. I would definitely give the mmf a go as the side effects were not too bad and maybe you won't get any at all. 

Good luck with it

Regards. Janet

[QT200QT600]

Tried it but no effect on platelets for me. I did find I started losing weight for no good reason, but I cannot be sure that it was the MMF as when it failed to work, I stopped taking it - but the inexplicable weight loss stopped too.

[kered]

I was on MMF for almost 5 years but after a gradual dose reduction I am now medication free. After 3 months my counts seem steady at about 135  but still I am not allowed love vaccines such as shingles. I am now in unchartered territory so who knows how long I shall be off any medication. Despite some gastroenterinal problems ,particularly at high doses, I was pleased that MMF allowed me freedom from too many hospital appointments. For me it has proved a blessing far different from prednisolone which was simply dreadful and I was  pleased it never worked for me.

[kered in reply to kered]

I should proof read before posting so my sentence should read  not allowed to have vaccines such as shingles.

[Avantidave1988 in reply to kered]

Did MMF Cause you insomnia

[AnthonyHeard Administrator ITP Support Association]

Thank you all so much for your thoughts and feedback.  Sorry I did not reply earlier but I only saw my specialist this week for a full discussion on the way forward.  We have now embarked on a course of MMF which will gradually replace the Prednisolone now being tapered off from 30 mg per day. Platelets have been really good whilst on the steroid since February 9 th, last count 148 this Tuesday.  So we shall see if MMF can do the trick.  Fully appreciate it can take a month to 6 weeks for MMF to kick in so fingers crossed.  If MMF does not work then it will be Eltrombopag next.  At least there are lots more treatment options available now than when I was first diagnosed 10 years ago. 

Will keep you all posted, and once again many thanks for sharing all your thoughts and experiences.