NPlate

Is anyone on here getting the NPlate shot? If so how is it going and how long have you been getting them? I have been getting the shot for about maybe 6 months. I ask my dr about slowing getting off of it and see how my platelets do. I also have Leukemia (CLL) and on a clinical trial for that. My platelets this week were at 314.

I do not have personal experience with Nplate, but I have been following the topic closely. I am sure others more experienced will chime in.

Nplate should not be used to achieve "normal" platelet counts. It should only be used to keep platelets at a safe level - above 50k according to the instructions; some experts say the target range should be between 30-50k. This is because of the increased risk of blood clots at higher platelet levels with this type of medication.

As you slowly reduce your medication to achieve a safer count, your platelets may plateau at a safe level no matter how little Nplate you are given. Then you have a pretty good idea if you are in remission, without exposing yourself to sudden changes in dosage. But first, you need to reduce your treatment to a safer dosage!

I understand that CLL affects platelets two ways, by crowding out platelet-producing cells in the marrow, and by triggering autoimmune responses, including ITP. Does your doctor know whether one effect or the other or both are responsible in your case? We don't see a lot of CLL on this board. How is your clinical trial going?

Mary

I have been on Nplate since September. I started on1mcg/kg dose but after a couple of weeks count dropped as reducing steroids so increased to 2mcg/kg. Since then my count has slowly risen on this dose. Last week it was 90 and I do not want it any higher. In fact when I return to clinic at beginning of February I shall ask if I can reduce dose to 1.5mcg/kg.

I get slight muscle aches and pains and feel very tired all the time but no worse really then when my platelets were in single figures.

Guidelines state that if count is above 200 for 2 consecutive weeks the dose should be reduced

Mary
After failing all the other treatments (other than splenectomy) I was then given NPlate over a 5 month period which put me into remission some 14 months ago. It took 5 weeks and an 8mcg dose before I rose above 5 and then I went on an incredible roller coaster of counts (including a couple of very high ones) until one week it all just stopped and my body returned to normal at 200+ without any medication at all - I guess I was just very lucky. I definitely developed a pattern between my NPlate induced count and my weekly platelet destruction when I didn't have a dose (-150 per week) and so we were able to determine a suitable dose amount and timeframe for the injections. One thing that was evident for me though was that the full effect of the dose came two weeks after the injection and so we had to be mindful of the cumulative effect of any doses if I had them in consecutive weeks.
The only side effect I experienced from NPlate was a constant mild headache which for me was a small price to pay for the success of this medication.

What dose are you currently getting and do you know if you have developed a pattern between your count vs dose?

Rob,

Thanks for our reply. Yes the dr , my local dr, does reduce my dose if I an above 250K but if I go under 250K they up it again. It can be 227K and they up it. I talked to the dr on Monday as to why the number 250K. All she could say was that's what the company that sells it says to do. Well, that's not go enough for me. I'll be on this forever if that's the case. I have both ITP and CLL, Dr says it seperate things. This is the 3rd time in 9 yrs, I have dealt with ITP. Each time it gets harder and harder to get it within safe range. This is the first time to use NPlate. I ask my CLL dr what he's thoughts are on this and he is getting back with me. The trial is going very well but they thought the trial would help my platelets work better but that part isn't doing as well as they expected. I have been on the CLL trial for 10 months now. I get a BMB in March and that will tell me more about how my platelets are doing in the bone morrow. THey are giving me 5mcg/kg and just reduced it to 4 this past Monday since I was at 314K for two weeks. Thanks for everyones reply. I have knee pain with the NPlate but it comes and goes.

Mary

I find this very worrying N Plate guidelines are quite rigid please look at section 2:1

pi.amgen.com/united_states/nplate/nplate_pi_hcp_english.pdf


Anne x

Mary:

Another thing, bone marrow biopsies do not show whether platelet production is adequate. That is a misconception. That used to be the thinking, because they look for megakaryocytes and if those numbers are good, they assume that platelet production is also. However, with ITP, megakaryocytes can be defective even though there are enough of them and will not produce adequate numbers of platelets.

This is a good thread to read:

pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Since you also have CLL, the BMB is probably a good idea, but it won't tell you anything about ITP.

Thanks, I get a BMB because it's a year on the clinical trial for my CLL.

I am 64yrs old woman....after having antiD (15TH jAN 2016) MY PLATELET IS 1.3LACS. Dr has planned to operate spleen. what is your opinion regarding it? before splenectomy, should I go for nplate?how long nplate will effective?

N-Plate is a weekly injection. It lasts as long as you keep getting it. Some people have gone into remission months or years after starting N-Plate.

I would try that first before splenectomy if possible.

bbb I would request an indium scan before even contemplating a splenectomy.

My 15 year old daughter has chronic ITP. She was responsive to eltrombag (brand name; Promacta) for about 15 months, then it just stopped helping her.

She has been on NPlate since Nov, starting at 1 mcg. After 3 months, she is up to 5 mcg and finally responding to it. She has been > 100 for 2 consecutive weeks, so things could change...but so far, this is the best we've seen in a long time.

She is not experiencing any side effects.

Well, my platelets were at 436 last week so no NPlate shot. This week it was 224 so no NPlate shot again. My question is, I would like to stay off the NPlate to see how my body response but they said at the dr office if it goes below 200 they will start the shots again. What are you thoughts on this, anyone? Would like to stay off shot and see how my body does. This is my 3rd time in over 9 years I have dealt with ITP. First time with the NPlate shot. The other times my platelets started working after different treatment. I go about 2-3 year each time. Does anyone see any harm in this? Thanks

Mary:

Most people crash at this point (going two weeks without the shot) so the decision might make itself. If counts are still up next week you do have the option to say no to the shot, but you are taking a risk there. Because of the way N-Plate works, most people do not have counts that stay up soon after starting the drug. If you are comfortable risking a very low count and staying there, that's your choice.

Mary
That is exactly what I did. My threshold was 150 before getting another shot - I would get a 2mcg dose which would take me to 400, rise again to 600 the next week without a shot and then I would start to fall at about -150 per week. On my 3rd cycle of doing this pattern we elected not to dose at 150 and to be honest I had expected to be back below 10, but when my result came in the next week I had risen to 200 and that is when my ITP just stopped and everything went back to normal. I can't say that the same will happen for you but that was just my experience.
Best of luck with your decision.

Robert, how long were you using N-Plate before that happened? N-Plate has been known to cause remission, but not after a few doses.

This is an interesting Topic.

I was doing very well on 2mcg of N plate weekly for the last few months.
I've had 2 colds in the 6 weeks and both times count went down.
Also been very stressed so there's another probable cause of lower count.

Sandi
All up I was on NPlate for 28 weeks until my count returned to normal.
My count did not change for the first 5 weeks (stayed under 5) while the weekly doses were gradually increased from 1mcg to 8mcg.
After that my count then went as follows (the * indicates when I had a varying dose of NPLate) *33,*315,*56,*228,512,403,*128,420,604,362,263,*151,*395,1037,1084,*386,*212,409,595,403,232,151 and then 193 which was the first time it had increased without the influence of NPlate and signalled the end of my ITP. 2 weeks after that and having maintained a count of 220+ without medication I was deemed in remission (Nov 2014) where I have thankfully stayed since.
Robert