Nplate

[lc12345]

If anyone managed to get Nplate treatment in the UK, how did you go about convincing the doctors? Have you had to fail every single treatment before that? That's my current understanding but probably it's not correct.

Thank you

[rjsmyth]

This is a reply I gave to another question on Nplate:-

NICE guidlines are that you only have to fail one other treatment (say steroids) to qualify for Nplate. The old guidelines did state that you had to have your spleen out first. I had a very long winded argument with my Haematologist who said that my PCT would not pay for it. Stand your ground and if all else fails ask to be referred to Dr. Drew Provan at the London Hospital. He wrote a letter to my PCT telling them the error of their ways!!

nice.org.uk/guidance/TA221

[lc12345]

Many thanks! Will do!

[lc12345]

one more question just came up: if I respond to treatments but relapse immediately right after withdrawal, would it be considered failed treatment?

[rjsmyth in reply to lc12345]

Yes - the only thing I respond to -which if you like is my "rescue remedy" is IVIG - only lasts for a fortnight.

[lc12345 in reply to rjsmyth]

ok, many thanks!

[Hidden]

I had n plate in the uk after failed steroids and rituximab and ivig that worked but didn't last.

[NickyD]

Nplate was only part of my treatment. We tried different doses over different periods and it did not help. I then asked to be referred to Drew Provan who put me on MMF which seems to be working well.

[Diamondqueen]

Oh what is MMF? I'm on nplate after everything else failed, even had spleen out (waste of time) and my consultant told me this was the last treatment they could offer me, I have had ITP for 7 years and nplate is only thing that keeps platelettes high (sometimes too high) then they cant give me injection till they drop, usually by the next week. They cannot stabilise me at all so weekly trips to hospital to have injections.

[salmagal]

Hi was on Nplate for a year had weekly dose of 400 even when my count was high I was taken of Nplate in July after having side effect of pheripherol neuropathy since then platelets have wavered between 60 and 45 so not using any meds

[kered]

MMF is a powerful immunosupressant used to dampen down the immune system and used mainly to prevent organ transplants rejections. MMF stands for mycophenolate morfetil and is increasingly becoming more readily used as an ITP treatment. I have been taking it for about two and a half years and after taking about 4 months to show any increases in platelet numbers it is working well . The lower the dose the better ,which is a matter of trial and error, but my dose of tablets has been reduced from 2g daily to 1g/day and hopefully further reductions are ahead. The aim is to get the platelet counts in the 50-60 range,but 40 will do very nicely. This drug does supress the T cells lymphocytes and you become more prone to getting opportunistic diseases, and a small chance of skin cancer ( black box warnings should be read carefully especially in relation to potential pregnancies).There can be other,usually minor, side effects, but we all behave differently and unpredictably to our own ITP. Sometimimes it is possible to get a remission,sometimes it stops working and is dose related, or for some reason it just stops working . However if it does work you are freed from very frequent hospital appointments and you get your life back. You will still be monitored regularly though especially for kidney and liver functions,etc. Good luck if you try it, Derek