N plate

[Ironspur14]

Hi everyone,

Just a quick one (i hope!!) how long have people been having N plate injections? My situation is that after ITP showing its head again in September, I've been having N plate injections to control the level (had rituximab but failed after 3 years, and cant do steroids as body goes into melt down and give me steroid induced type 1 diabetes).

The N plate seems to be doing some sort of job, but I need a new shot every 4-5 weeks as platelets refuse to steady out. Not sure on my high level, but after 3 to 4 weeks I'm around 80, a week to 2 weeks later I'm anywhere around 10-20 platelets. So they are like a yo-yo!

Have people been having N plate for longer? I know it is meant to be used to maintain levels around 50.

Have people given up on N plate?

I just have the feeling I'm not really progressing and would like a nice maintained level so iI can get on with life, without the thought of low levels, or being tired or having a sodding rash every few weeks!!

[Lynney11]

I have been receiving weekly nplate injections for 3 years and it's worked at keeping my levels at around 50-60. I have very few symptoms - just bruising and occasional nosebleeds. However just recently I have changed treatment to Revolade (eltrombopag) due to the inconvenience of weekly injections. I will have my first blood test after the changeover tomorrow, so watch this space to see the result! What level of nplate are you on? I was having 0.33 micromils weekly. I am surprised that you are having injections 4 or 5 weekly. Perhaps you should ask your consultant if it is possible for you to have a more frequent injection.

[Eileen-Emily]

I have been having Romiplostin (N plate) injections for almost a year the affect of an injection normally lasts 3 weeks and I have the medication at home in the fridge and inject myself 250micrograms. I do require a blood test every 3 weeks and the levels are between 32 and 183 depending on who knows what! The injections are a bit of a nuisance when trying to plan holidays eltrombopag would be more convenient but unfortunately due to having another auto immune condition they are not suitable for me. Obviously I am not a medic but 0.33 per week does seem a little light perhaps you should query. Good luck.

[Kyriak51 in reply to Eileen-Emily]

You lucky that 250mcg hold you for 3 weeks, I require 650mcg weekly to maintain my counts at 50K. Count your blessings. Kyriak51

[Kyriak51]

Nplate was approved in 2008, I started injections in 2010 and require weekly injections to maintain my count at 50K. I can't servive without this medication.kyriak51

[Kyriak51]

Nplate was approved in 2008, I started taking weekly injections in 2010, it's the only thing me alive. I don't understand why you are only receiving injections once every 4 to 5 weeks. You will achieve an adequate platelet count at that rate. Kyriak51

[Kyriak51 in reply to Kyriak51]

Made a mistake with post, I ment to say " you will not achieve adequate platelet with injections every 4 to 5 weeks, sorry. For Lynney11

[Ironspur14]

Had a blood test today, higher than I expected, count of 50, having a injection tomorrow because of my history and consultant is away for 2 weeks. Spoke about alternates, I have ruled out splenectomy, rituximab has failed once before, and tablet for of eltrombopag (I think) has lots of restrictions. Steroids are a no go also.

Consultant understood my concerns but is happy for time being with my progress. And having seen some of you having weekly shots, or being on it for a lot longer than me has made me realise I'm not doing as bad as I thought.

I hope you are all doing well, and thank you for your replies.