Possible Rebound for N-Plate?

For the last three weeks, my platelets have fallen each week, about 50K each week.

They are down to 77K this week. I have been getting the same dose of N-plate each week. Has anyone seen their platelets rebound after a few week fall with what I think will be dose increase of N-Plate?

Mine were good for a few weeks then fell, I am now on alternate weeks of 250mg and 500mg and things seemed to have levelled. I have had ITP for over thrity years and have many different treatments so I am cautiously optimistic over NPlate but it does seem to working.

N-Plate is supposed to keep counts in a safe range, not a normal range. It seems to be doing the job.

I had that for months when I first started with Nplate. I'd have a couple of weeks or three with good counts and then a fall to 1 or 2 so up the dose. Eventually the good counts stayed and I was able to reduce the dose back down to the lowest again. All has been really stable until just recently but the upset is due to a vaccination I had. I'm sure I'll get stable again but it just takes time.

As Sandi says you're not supposed to get a normal count. I wouldn't be happy with a normal count due to the risk of clotting.

Thanks for the responses. I am used to the treatments where once they are up, if they start to drop the treatment is no longer an alternative.

I'm not sure I understand. Why is the treatment not an option if counts start to drop? Doesn't the next treatment bring them back up?

I think I understand. They mean that with other treatments like prednisone, when the count starts dropping you kind of know that that's it, onto the next thing whereas with Nplate the count can go up and down and it doesn't mean it isn't working. And that is true. Nplate isn't quite like any other treatment although many people, including doctors, don't seem to realise that. See how many people we see try Nplate for a few weeks and then give up, or use it with other treatments and not know what's happening.

What Ann Said

Okay. I misread what you wrote. I know that about N-Plate.

HI all,

I have been on N-plate for over a year. The goal of n-pate tehrapy is to keep your platelet levels above 70K. the goal is not normal, just safe. If N-plate is working your bone marrow should be over producing platelets. If your platelet counts are not staying at a safe level, then either 1.) your system is not responding to the N-plate, or 2.) you are responding to N-plate but your body is producing more platelets but at the same time the antibodies are producing and attacking the platelets at a higher rate. How, nice of a disease.

As for as I know, the only way t check that is to have a bone marrow test to see whether which is which.
Clem

Clem:

A bone marrow biopsy does not determine that. See discussion:

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Hi, have been on N Plate now for a few months, have had ups and downs with counts. Pre N Plate my count would range from 10 to 15 at its best. Had a count of 1 and was hospitalised with a nose bleed, came out and haemo recommended we try it. Have really never looked back . Not sure how they prescribe in the US, but my haemo gave me 375 for a few weeks and my count shot up to 200+, so he dropped it to 250 and it dropped, so they put it back up the next week. Over the last couple of months we have kept the dose at 250 a week, and even when it dropped to below 50 we sat it out. I am now classed as 'stable' with a count of around 100 and am now self administering at home, with fortnightly counts at the hospital
Anne x

Hi, sounds good. Where are you in the UK? I'm in London. I self inject Nplate too. Hopefully you'll be able to go less and less for blood tests. I was going every 4 weeks for a long time but have just started going every 8 weeks and it's wonderful! I've also been able to reduce the dose so that I'm now on a really small amount and still get a good count.

Hi Ann, I'm in Durham and have had ITP for 26 years as far as I know, first low count was when my first son was born 26/27 years ago. Can I ask, the last couple of jabs I have done, the same night I have cramps in my left hand and the blood vessels in my wrist seem swollen, it only lasts for a half hour or so then passes, has this happened to you?

I haven't had any side effects at all and haven't heard of anyone having anything like you describe. Do you do the injections into your arm maybe? I use the abdomen.

I inject into my abdomen too, so not sure if it is just a coincidence, will see what happens on Tuesday (am in for a count then home to do injection) and if it happens again will see what my lovely heamo says, he is brill and we have a great relationship