TOPIC:

I have received an N Plate injection weekly for the last 9 months. Most weeks I end up with moderate to sever joint pain two days each week usually Tuesday/Wednesday or Wednesday/Thursday following a Friday injection. Wondering if anyone else has this experience?

I've never had to go with N Plate - but an acquaintance gets her shot every Monday and she has a horrible headache afterwards.

Sorry you are having joint pain for so long after the shot - have you asked your hematologist about it?

Thanks for your comments.
I have suffered with joint pain from arthritis for over 40 years so it is difficult for me to distinguish the cause of my weekly discomfort. The pain is in areas where arthritis has been diagnosed i.e. right shoulder, neck and lower back. Because it has been a weekly occurrence and subsides after 48 hours or so, I am guessing it is N Plate related. I started tracking my stress level, physical activity and diet closely the last few weeks and will continue in hopes of seeing some patterns that I can correct to help the situation.
The good news is my counts have been in the normal range above 140,000 for the last 8 months so I have nothing to complain about. If a couple of days of discomfort is the price for a normal platelet count so be it. Extra strength Tylenol gets me through it.

You need to be aware, especially if your doctor isn't, that the treatment goal with NPlate is not to normalize the platelet count. It should remain around 50. Normalizing the count puts you at risk for clotting events like stroke or DVT.
A lower dose might achieve both a safe count and perhaps reduction of your arthritic symptoms, if they are from the drug.
Please talk with your doctor about this,

Thanks for you comments. They are greatly appreciated.
While I did go as high as an N Plate dosage of 3mcg/kg early on it caused my platelet count to stay above 200,000 for two consecutive weeks so the dose was reduced to 2mcg/kg and when my count stayed above 200,000 for another two consecutive weeks the dose was reduced to 1mcg/kg. That occurred in August 2019 and I have been at the 1mcg level since then. My counts have been between 140 and 200,000 during that time with three exceptions, 237, 267 and 117,000 ( stomach virus). I have been very lucky.
I share the concern for blood clots and stroke. At the same time, having the stable counts is reassuring. I do not want to go back to counts below 10,000 with related hospital stays and intravenous Ivig, etc. Prior to going on N Plate, I tried high doses of Dexamethasone and Prednisone and four doses of Rituximun none of which had any effect.
My Hemotologist and I recently discussed trying a biweekly injection of N Plate at 1mcg/kg to see what effect it would have on my counts. Assuming the counts were still reasonable I would stay at biweekly or make further adjustments based on where my counts went. We decided to wait to experiment until this Covid-19 crisis is under control.
I would appreciate your thoughts.


If anyone else wants to comment, please do.

As Janet has said the target platelet count when treating ITP is ≥50. Over here in the UK the cut off count for lowering the dose of Romiplostim is >150 and not >200 as it is in the US.
I get twitchy if my count goes above 100, the thought of all those big, juicy immature platelets going round my system makes me very wary. Plus one never knows how many micro platelets are circulating around too.
You say 'we' decided to wait to experiment. Was this your idea or your Haemo's? Covid 19 could be around for a long time so my question is how long are you prepared to put yourself at risk of a clot before you lower your dose?

Thank you for taking the time to comment.
Interesting that the cutoffs 150 vs 200 are not in line. Here in the U.S. they do not take you off N Plate unless you count exceeds 400,000.
Because I am at the minimum dosage level of N Plate, if i choose to reduce my dosage I will receive no injection. If I do so that means I will not be put back on N Plate until my count drops below 50,000. That target is in line. The last time I was in that position my count went from 59,000 to 6,000 within a week and I ended up in the hospital.
I have an appointment with my Hemo in two plus weeks and this is the main point of discussion. I will most probably skip the injection, monitor my counts and see where this goes.

Sorry to bother you but do you know if any of the other readings in my weekly CBC indicate a high amount of immature or micro platelets or provide any other indications of the make up of my blood/platelets?

Thank you.

Mpv tests the average platelet volume. I also had D-dimer on one test to rule out blood clots, but they only put it on there, because I said I was afraid of taking my meds, because I had symptoms that could indicate a clot. Ask your doctor?

Thank you. All of my other CBC factors have been within the normal range over the last 9 months i.e. MPV between 9.5 and 10.0. Also, I had an annual physical and everything was good including all the tests for my organ functions i.e. kidney, liver, etc. That said I plan to speak to my doctor when I meet with him in two plus weeks about stretching out my injections to every two weeks versus one.
Stay well.

I'd be really wary of skipping a week. The drug level could dip too low and platelets tumble in the interim. I now take 1.5 mcg/kg myself. Why not try a .5 mcg dose weekly instead of skipping a week? That's what I'd want to do if it were me.

When I was on it and my count went up higher than I liked, I started doing every other week, then every three weeks. Then when my count was still high I stopped altogether and my count settled down to about 80 and stayed there for a few years.

Thanks. I plan to discuss all alternatives with my Dr. i.e. dropping to .5mcg, staying at 1mcg but going every other week, etc. I also want to see if I can reduce the frequency of blood tests from weekly to bi weekly or monthly. Since my counts have been between 140 and 200,000 90% of the time the last 9 months with one reading below 140,000 at 117,000, I don't see why reducing the frequency of the CBC's would be an issue. It will be interesting to see what the Dr. thinks. All I am not sure what Medicare will allow so I am looking in to that also.

Thank you. It would be great if I could go every two or three weeks. The idea of stabilizing at 80,000 with no treatment would be the ultimate goal. We will see what my Dr. says in two weeks.

I don't think dose reduction coupled with blood test reduction is a compatible concept.
Guidelines for TPO 's all state weekly monitoring during dose adjustments until stability of count is achieved. Something I never achieved on Romiplostim my counts swung about all over the place.

That makes all the sense in the world. If you are adjusting dosage especially in my case where I could be eliminating an injection all together you should not skip a blood test to tell you where your count end up.
I will speak to my Dr. about either maintaining my 1mcg dose and testing biweekly or monthly or reducing the dosage to .5mcg or possibly zero and continuing to test weekly.
Thanks for all of your advice.
Stay well

Carcducci, looking through 'tacmom' comments, looks like she (her daughter) tried half dose of Nplate for a while. See comment on 30 Dec 2011.
pdsa.org/discussion-group/search.html?searchuser=tacmom&exactname=1&searchdate=all&order=dec&childforums=1&limit=50&start=0

First time, half dose didn't work. But eventually, was able to get off Nplate entirely. See comment 30 Nov 2014.

Good luck !

Thank you for taking the time to send me the link. I read through it all and the young lady has had quite a successful journey.
I continue to have good luck with N Plate although my " stable " is a range between 137,000 and 205,000. When I charted my counts it looked like a roller coaster with each rise followed by a drop. I just passed the first anniversary of my ITP diagnosis. My first N Plate anniversary will not be until June.
Meeting with my Hemotologist this Friday and where to go from here will be the main topic.
Stay well!