Mycophenolate - any feedback.

So I am still here battling up and down with counts, latest update I was on 4mg of Steroids and it wasnt working counts went down to 22 and I have since then had 2 bouts of IVIG which pushed counts up to 273.
However its my third week and counts sitting at 156. I am still awaiting confirmation of getting the drug - Romiplostim / NPlate, I was first told that my NHS Hospital had funding for it so they could process paperwork etc, but now there seems to be a glitch - as the NHS Hospital I go to has not ever used this drug before ( so they say ) my Haematologist is ok with using it as its moving forward with new medication so to speak. I even went to see a top specialist in London recently and he did mention that they would be able to consult with him if they needed further clarification or assistance. So, I am left with what next....
They are now talking about Mycophenolate, so wanted to do some research and find out, how quick it works, what counts you can expect, stable counts, and of course the big question - side effects.
I read: (from PDSA website)

Extremely rare, but very serious side effects, include Pure Red Cell Aplasia, a type of anemia 9 and progressive multifocal leukoencephalopathy , a rare, incurable neurological condition.

I think that is why I am so keen to try Romiplostim/Nplate as I know even the worse side effect is reversible - fibrosis of the bone marrow.

Any thoughts, greatly appreciated!

I've used it for Lupus and couldn't tolerate the side effects. Some people tolerate it well though. When it is used for ITP, it is not known to work quickly if at all. It can take weeks or months to get a response.

I took it for about 8 weeks. Zero side effects. Count rose to low 40's within 2 weeks, stayed there for about 3 weeks and then dropped back down to high teens over 3 weeks & then I stopped taking it & went back to steroids for a while.

So it didn't last for me, but can cause remission in itp after the drug is stopped - assuming you get high enough counts to try.

Hope you get an answer on your n-plate quickly

I stopped taking it 2 days ago...once increased to maximum dose although my platelets rose to 90 I lost my appetite, couldn't sleep and became weepy...plus my platelets dropped back to 30

I have been taking one gram of generic Cellcept (Mycophenolate) every day for the past 2 years for ITP and have had no problems at all.
I switched from Promacta to Cellcept due to the cost. Promacta is a $500 monthly co-pay for me and Cellcept is only a $10 monthly co-pay. I can do a lot of things with that $490 savings every month.

Generic Cellcept keeps me in the 9k-20k range with minimal side issues.

Life continues.


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Jack,

It's hard to believe that it's already been two years! You are lucky that this works for you. And, you do so well with the low platelets! I hope in my future that I can do so well!

Dee Dee

Dee Dee, it really has been two years of Cellcept...almost to the day!
It has been one of the least intrusive ITP treatments I've used over the years. And with the money I've saved, I can get a new chain saw.

Folks here are proof we are all different, ITP affects each differently, we respond to various treatments differently, we each have our own safe threshold, and 'one size' does not fit all.
And there are a number of us here who are proof that we can live quite well with low counts.

Which reminds me, I haven't had a count awhile. Oops! I'd better shuffle on off to LabCorp soon.



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