Tpo receptor agonists: I was on... - ITP Support Assoc...

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Tpo receptor agonists

Lou1967 profile image
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I was on steroids for 5 months and now been taking mycophenolate for 4 months with no results I'm just about to start injections of Nplate, has anyone had experiences of this drug?

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Lou1967 profile image
Lou1967
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Lynney11 profile image
Lynney11

I have been having weekly nplate injections for the last three years. It does a good job of keeping my platelet count stable (above 50) although it has risen on occasion to over 100. The only side effects I experience are acid reflux (I take Lanzoprazoke for that) and headaches which I can deal with. The downside was the weekly trips to the hospital for the injections but for the last 18 months I have been self injecting at home. I collect supplies of the injection packs from the hospital and they usual give me 4 or 5 packs at a time which have to be stored in the fridge. However this leads to another downside - holidays abroad. As I am holidaying in the USA this summer, touring around, I have asked my consultant to let me try Eltrombopag tablets, which I will start taking next month. Hopefully I will not experience any bad side effects in which case I will be on them indefinitely. I hope you have a good experience taking nplate, I can certainly recommend it. Just remember that if you like travelling, as I do, then you might find it a little restricting. Good luck!

Robert1959 profile image
Robert1959

I was given NPlate for about 5 months before I went into remission and it was the only treatment that worked for me. Like Lynney11 has said, the weekly trips to the hospital for injection are inconvenient and the only side effect I experienced was a mild headache. I was highly reactive to it and had to be very careful on the amount I was given. A very small dose (.18mls) would shoot my count to 600 and in the early stages of my treatment I even reached 1,084 but thankfully I didn't have any problems. NPLate is a powder which is mixed with water and the dose is calculated based on your weight in kilograms and the powder in micrograms. eg a Level 1 dose is 1mcg x your weight. The maximum dose you can have is a Level 10. I found it very helpful to record the dose and my platelet count each week so we could estimate the dose for next week as I developed a very distinct pattern.

It initially took 5 weeks before there was any effect so do not be concerned if it does not appear to be working to start with. After that it was a roller coaster ride of ups and downs until my ITP went away.

Keep us informed on your progress

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