Nplate, higher counts, and clots

I've been on Nplate for 2 months. Results have been up, down, and all around. I'm very responsive to it, but can't yet say I've achieved any stability at all.

For example, 2 weeks ago, count was 3. One week ago, 188. That's how it's been going the whole 2 months.

Today, count was 191, so the dose was kept the same as last week.
That count worries me, since it's contrary to the recommended 50 the prescribing information recommends. I understand the doctor's reluctance to drop the dose this week. Dropping it in the past contributed to the crashes.

Question 1: Does it make sense to first achieve a stable count for several weeks or months in a row, even if it's too high, and then tweak the dose downward gradually from there?

Question 2: How worried should I be with a count in the high 100s at this point? Is it an excessive risk? Or are the odds of clotting only slightly higher, so that I should probably be okay until I find a stable dose?

Janet:

That would be a hard question to answer. One of our members here had a stroke with counts around 190 on N-Plate (pretty sure that was the number), but I've seen another on N-Plate have counts up to a million for weeks (thought that was crazy) and she did fine.

I think a lot would depend on your other clotting risks (hereditary factors, age, clotting factors such as APS antibodies, platelet microparticles, whether or not you've had a splenectomy, etc).

It can take time to get stabilized on a dose. It also helps if your doctor is very familiar with N-Plate and does things properly. N-Plate can be a tricky drug; most people do fine though.

Great that you are responsive so can take a lower dose. Something my hemotologist said that might be helpful-

he said many doctors tend to adjust NPlate in too large of increments. Such as, if you are taking 3mcg per kilo of body weight and your numbers are too high, many doctors would reduce the dose to 2mcg or lower. My hemo would reduce the dose instead to 2.9mcg or 2.8- just a teeny bit.

But like you know, people DO really fluctuate on Nplate. I am a weird patient whose numbers have crept up to 50K and stayed stable- hemo said hes never had a patient like me.

If my numbers were high like yours on Nplate I would probably take some Omega 3 or a baby aspirin. Not meaning to give advice, because I don't know whats right- thats just what I would do. I am nervous about clots- once had some strange things happen when I was over 100K on Promacta- memory lapse, forgetfulness, brain fog, pale skin and hair loss on lower legs. My nurse said it sounded vascular. I quit Promacta right away and all symptoms were gone in 48hrs. good luck!

I wouldn't take aspirin as if the count falls again you could be in more trouble with bleeding. Aspirin affects a platelet for the whole of its life. But I can't say what to do about the high count. I wasn't a compliant patient and would make up my own dosing system!

Oh wow. Hearing that someone here suffered a stroke with my same numbers is worrisome. My clotting risk is somewhat unknown. I have my spleen, no family history, and was told I don't have APS antibodies; but I am older (64) and don't know about microparticles.

Now that I think about it, strokes from brain bleeding and strokes from clots cause the same damage. Damned if you do, damned if you don't.

My doc is not very experienced with Nplate. He and his nurses have told me they had only 3 other patients who'd used it, none currently except me. The others have achieved partial or full remissions.

Posey, your hemo says exactly what I was thinking the other day... wondering just how finely tuned the dose can be. I started at 1 mcg/kg, and my doc has been either doubling or halving the dose according to the response for that week. Drastic changes, considering how responsive I was to the initial two doses. (Week 1, from 7k to 60k; week 2, 345k)
You can bet I will have the discussion about smaller changes at my next office visit!
I already take a fish oil cap per day. Am leery of aspirin, but I appreciate the suggestions.

Ann, it sounds as if you were able to self-administer your Nplate? I'm not allowed that over here.

Janet, I was also wondering about the smaller dosing changes but not knowing enough about N-Plate, I didn't mention it. I'm glad that Posey did. That is probably the best idea it shouldn't have to be an 'all or nothing' jumping of doses. That is definitely something to discuss with your Hemo.

I am pretty sure that people here can self-inject N-Plate too once they get regulated. I remember reading that a few people have done that. Self-injections are not difficult; I've done it with Methotrexate. Youtube has great tutorials!

Apparently David Kuter's patients self inject in the US. But he also said at the recent conference that after a year on Nplate he suggests splenectomy. All I could think when he said that is what a shame, if he waited a bit longer they may well go into remission.

My count last week was 116 on no treatment, after 3 years on Nplate and over a year off it. I did also get the immune disorder upgraded from borderline CVID to full CVID though which was a bit of a bummer, but can't have everything.

I did also get the immune disorder upgraded from borderline CVID to full CVID though which was a bit of a bummer, but can't have everything. - Sorry to hear that, Ann. I hope it doesn't give you too many problems. Great counts though!

Apparently David Kuter's patients self inject in the US. But he also said at the recent conference that after a year on Nplate he suggests splenectomy. - That is disturbing. You'd think that these top doctors would seriously synchronize their treatment plans as all it does is confuse patients. Anyone who keeps up with current research should know which direction to go and it amazes me that there is so much discrepancy from one doctor to the next. If the Doctors who are listed as PDSA Medical Advisors would at least agree, that would be a start.

Midwest- you are becoming an Nplate expert! ha Have you read the official dosing instructions? heres a link:

www.nplatehcp.com/nplate/about-nplate/dosing-and-administration.html

Your doctor IS following Amgen's instructions for using NPlate. Though its questionable if following the instructions is the best way to administer NPlate. Really so many people have numbers that shoot up then crash- seems there needs to be some fine tuning of the dosing instructions.

Yes, you'all are right about the aspirin, its not the best idea esp when your counts are dropping.

David Kuter... said at the recent conference that after a year on Nplate he suggests splenectomy.

I don't understand. What's his reasoning?
Is he saying if Nplate hasn't worked within a year then splenectomy should be done in lieu of any other treatment?
Or is he saying that even if it does work, it shouldn't be used for longer than a year? Why not?

Posey, I had not seen that webpage with the physician's treatment guidelines. Only the patient-oriented one. Thanks for that. Yes, my MD does seem to be following them. Trouble is, when starting at 1µ/kg, increasing by 1µ is a big leap. But once you're at 7 or 8, then increasing or decreasing by 1 is a mere tweak. It only makes sense to make much more gradual changes in the beginning, right?

Not necessarily. If your starting dose is 1µ/kg and it gets your count up to around 30k, getting the same amount plus that small tweak the next week would or should put you a bit higher than the 30k. Forget about the drop, that is probably going to happen until you get stable and those small tweaks could be the trick to doing that faster.

Has anyone ever had really high counts on Romiplostim/N-plate? I've been on it for about 18 months now, with varying success. On the whole I've had good counts, between 50 and 80 (my non-treatment baseline was about 5-10), with some relapses addressed by adding low dose Pred just to get counts to a safe level (which is 25+ for my consultant). I've also been creeping up the dose to avoid the crashes, and am now on 8mcg/kilo. Had the occasional high count (100-150) but otherwise all good.
However something strange happened recently. Back in late October I had quite a low count, so my consultant put me back on low dose Prednisolone (especially seeing as I was flying to the US for a few weeks). I was well and symptomless while there, so didn't get a blood test done (also wasn't sure how to get one without triggering a travel insurance fiasco). Back in the UK, I had a test done 2 weeks, and my count was 574. Bit worried about that. Have come off the pred completely, and am seeing the consultant again this week. She wasn't unduly worried, said that under 600 is ok - though of course that is not true on Romiplostim, as the target is 50-100, no?
I've had a terrible chest infection, and read that bad infections can actually cause high platelets. I'm hoping that's what happened, and now the infection is more or less gone my platelets will come down. The plan is to start reducing the Romiplostim dosage very slowly.
Has anyone else experienced this? In 6 years of ITP I've never had counts so high.

Funny because that's what happened to me. I took prednisolone and got a really high count and straight after had to reduce the dose of Nplate. I had been on 5mcg/kg and quickly got down to 1mcg/kg and never took more than that again. I wonder why that happens.

A high count because of steroids is not such a bad thing. The platelets will be living longer and not all new and large.

I've only been on NPlate for 3 1/2 months and have been taking 10 mg pred with it.
My count is bouncing, even without any change in dose of either med.
Highest count was 345. (Yes, that makes me nervous, too!)

Three weeks ago, doctor experimented lowering the pred from 10 per day to 10 on alternate days. That slight reduction - without changing the NPlate dose - caused a crash from 155 the week before to 9. Pred was restored to 10 every day, no change in NPlate; count rebounded to 309. (Yes, I'm nervous yet again.)

My count has been above 100 for almost the entire 3 1/2 months. I don't like it. Feels like the sword of Damocles hanging over me. And since my only reason for taking NPlate was to be able to wean off pred, it's beginning to feel like a failure.

Janet:

I'm sure there is a way to tweak the N-Plate dose and get off of Prednisone. Why don't you suggest going down 1 mg at a time every few weeks with the Prednisone? That shouldn't cause a major fast drop and you can see what's going on weekly. I think that with N-Plate, you have to be prepared for some major drops here and there, especially when trying to get stable. It can happen even when things are seemingly going well. I would not consider this a failure at all! It would be though if your counts had been under 20 the entire 3 1/2 months, but that isn't the case. You'll get there, just have to be a bit creative.

Sandi wrote: Janet:
I would not consider this a failure at all! It would be though if your counts had been under 20 the entire 3 1/2 months, but that isn't the case. You'll get there, just have to be a bit creative.

Thanks, Sandi.
I'm not planning to throw in the towel any time soon. Too stubborn for that.
This week, I'm taking 10 mg one day and 5 the next. That's more than the 1 mg decrease you suggest, but more gradual than the 10/0 alternating. If this doesn't work, I'll be sure to suggest even smaller decreases.

(I like your new photo. Cute. )

Good luck with it and let us know how it goes (I'm sure you will)!

I decided to give up on contacts and got new glasses. BIG glasses! So glad those little rectangles are out of style - finally!

Hi,
I have been on nplate on and off for about 4 years my first experience with nplate was not w good one, not to scare you but I think it's good to hear bad experiences just to be extra careful I was 25 at the time and ended up having a stroke my dr was keeping my platelets over 100 they ended up spiking to 900 and caused the strike a lot like you I was never really stable on nplate. Express to your dr your worries because nplate is supposed to be used to obtain a count of 50 not a normal count, says it right on the drug info. I still have no feeling in my left arm and I know this could of been much worse and I got lucky I just like to share my story so people are aware it can happen. My second start of nplate was a year after the stroke I did better with it at a low dose and new dr I them got pregnant, and had to be on ivig the whole time. My third time with nplate was right after my baby in December and has gone smoothly since, knock on wood, all I can say is be careful and if your nervous about it talk to your dr, and if he or she doesn't listen to your fears get a second opinion

Kelirae- wonderful that you had your baby! Beautiful! You are awesome.

Midwest- I agree with Sandi, tapering the pred more slowly is a good idea. Seems every doctor has a different idea on how to taper pred. In my experience 10mg to 10 alternating days is a fairly big jump.

I've gone 10 to 7.5 alternating, then hold at 7.5 for a week. Then to 6.5, then to 5mg using the same alternating pattern. But under 5mg I have to taper by only .5mg because I get so fatiqued, but I think the super-slow taper also helps keep counts stable.

I'm at 1.5mg pred right now and 3mcg NPlate. My counts are around 50K. On the weeks that I taper down .5mg pred I will see a drop in counts. But then the next week when I hold at the new pred dosage the count goes back up. good luck!

Kellirae... What a beautiful little baby! You should be so proud. Give his chubby little cheek a kiss for me.

I hear what you're saying about the high counts and stroke. Even though my MD doesn't have tons of NPlate experience, he's aware of the guidelines and is trying to follow them. My stupid body isn't cooperating, though! My goal for NPlate treatment was to eventually stop the prednisone, and that's apparently the problem. During my time with NPlate, I've crashed to single digits far more times than I've hit 300, so I guess my bigger risk is having a stroke from a low count than from a high one. Meantime, I guess I'll have to risk it from both sides.

Is prednisone made in 1 mg tablets? I've only ever had 5s and 10s. Would be hard to cut a tab into 5ths or halves of 5ths.

Count was 95 yesterday, after 304 last week. They didn't have the NPlate on hand, so I had to go back today for the shot. After I pushed my sleeve up, I saw large petechiae on my forearm. Pointed them out to the nurse and told her it was one of my signs. At first she was going to have me come in Monday for another count, but decided Wednesday was soon enough.

Janet:

Yes, Prednisone does come in 1 mg tabs. That was the only way I could ever taper after being on Prednisone for more than a few months.

I'm surprised you didn't get a count done today considering the petechiae. It would have been interesting to know for documentation purposes.

N-Plate should work on it's own without Prednisone; it's really odd that you'd crash like that by dropping Prednisone doses. I don't understand it.

I've had the same experience of counts dropping dramatically by reducing the prednisone dose just a tiny bit. It really makes no sense.

When I am on 5mg prednisone by itself my count is 2K. So you'd think the 5mg pred is not doing much.

Then I was on NPlate along with 5mg pred- counts were 66K. I reduced the prednisone to 4.5mg just a very tiny amount and my counts dropped to 25K. I could hardly believe .5mg would make any difference! But it has happened every time I reduced the pred dose even a speck. And if I stay on that dose of pred for a week the counts come back up to 50K or abouts.

Another Nplate topic: I was talking with my hemo about why counts fluctuate wildly, and he said "a lot depends on how long it stays in your system." He didn't say anything further about it, but what I imagine from that comment is if Nplate is staying in my system for 8 days, and I get injections every 7 days, my counts would be stable. But if Nplate only worked for 5 days then on day 7 I'd see a crash. Or if Nplate was working for 15 days, then getting a dose on day 14 would be like getting a double dose.

But I would think that the amount of the drug in your body would decrease as the days go on. I don't think the full potency would remain for the full 7 days then suddenly be gone. I'm thinking out loud because this doesn't make sense.

Also, the .5 mg's causing a huge drop doesn't make any sense. I believe you both but logically, it doesn't add up. :dry:

It's really not very simple because Nplate takes about 5 days to start to work, so the first 5 days the count is still working with the previous dose. Then the one dose can work and be at its most potent at 14 days or so. So each dose overlaps the effect of both the previous dose and the following dose. Unless you had daily counts you wouldn't really know what is happening in between. I would have liked to have done daily counts to see but the hospital wouldn't have allowed it of course.

Sandi wrote: Janet:
I'm surprised you didn't get a count done today considering the petechiae. It would have been interesting to know for documentation purposes.

The office isn't technically open on Fridays. It's staffed only by a nurse or two to monitor chemo patients needing treatment that day. No MD on site to order the count. Honestly, I don't care. I am SO over blood draws these days!

poseymint wrote: I've had the same experience of counts dropping dramatically by reducing the prednisone dose just a tiny bit. It really makes no sense.

When I am on 5mg prednisone by itself my count is 2K. So you'd think the 5mg pred is not doing much.

Exactly! The pred wasn't doing much for me before I started NPlate, so I had absolutely no expectation it would be so darned hard to taper off!

Hi All, just trying to make a decision on Nplate or Mycophenolate, and so worried about clots and strokes on Nplate, but it seems less toxic than immune supressants.

Is there a chance when you inject Nplate at first you could get very high counts, or Kelirae was it due to the Doctor up-ing the dosage a lot that this happened to you?

You are very brave to go back on it after that happened I must say - but I have read some of your story and I think you are remarkable - ITP and a baby - well done you!

It's highly unlikely that you would get very high counts straight away on Nplate. They should start you on the lowest dose and you're lucky if you get any rise in counts at all. Some doctors are now starting people on the third dose to save time but you could insist that they don't do that and take it very slowly.

I found self injecting Nplate into the stomach area was extremely easy and not at all painful whereas I found the injections that they first did for me in the arm were very painful. So self injecting was definitely preferable for me.

Goshdarnit. The saga continues.

- Three weeks ago, count 304. Doc kept NPlate dose the same, but decreased pred from 10/day to alternating 10/5 a day.
- Two weeks ago, count 95. Both med doses kept the same.
- One week ago, count 58; NPlate kept the same, but doc said to return to pred 10/day. I didn't.
Taking into account what poseymint and other have said about more gradual tapers working better for some, I took it in my own hands and split the difference by alternating 10/7.5 daily. I didn't report that I did this.
- This week, count is 322. NPlate dose kept the same.

I plan to take "my" dose of pred for another week. Will see the doc next week and will 'confess' to what I've done. It was probably misguided to DIY it, but I had to. It just feels all wrong to keep going back and forth to the same two dosing schedules which result in such wild count fluctuations.
How does that saying go... "Insanity is doing the same thing over and over and expecting different results".

Janet:

Ha, your counts make no sense according to the doses. Very strange. I can't believe that such small amounts of Prednisone can make that much of a difference.

The problem here is that you are dosing two different meds which is confusing matters. If you had gone to the daily 10 mg's as your doctor suggested, your counts may have been higher. They went way up as it is on the 10/7.5 dose. You shouldn't feel bad about that.

I think the only thing to do here is to get off of Prednisone as planned and just deal with N-Plate.

Janet,
I was refractory to all other treatments and NPlate was the only drug that worked for me. From my experience with NPlate I would like to make the following comments;

- I was started on the smallest dose (L1 or 1mcg/kg) which was then increased each week to L2, L4, L6, L7 and it was only when I had a L8 dose did it increase my platelets from 0 to 33,000 (33) and after that I never looked back. It was then a roller coaster ride of adjusting dosage levels to platelet counts each week and my counts fluctuated wildly. I generally stayed in the 150 to 600 range but at one stage my counts were 1,037 and 1,084 for 2 consecutive weeks and I was told to take 1/4 of an aspirin tablet to reduce the 'stickiness' of the platelets. I then lost 700 the next week and was back into the normal zone. Strangely I felt no different at 1,084 than I did at 0.

- I found that the full effect of a dose was evident 2 weeks after it was given and often my counts would continue to rise even though I had not received a dose the week before.

- When I started NPlate I was still on 37.5mg of Prednisone and was being tapered down at that stage. I was finally off Prednisone some 3 months later and I do not believe that it had any effect on my counts at all as my counts stabilised when I was only on the NPlate.

- You mention that your NPlate dosage was being adjusted in 0.1mcg increments which I would have thought was almost immeasurable as 0.1mcg/kg = 0.0002ml/kg and that is why dosage adjustments are given in 1.0mcg increments.

- With regards the site for the injection, according to Amgen, it should only be given into the stomach (SC) and not the arm and this is how it was always given to me.

- I eventually went into a cycle of 150 (L2 dose) to 400 (no dose) to 600 (no dose) to 400 (no dose) to 250 (no dose) to 150 (L2 dose) to 400, etc and this cycle repeated itself numerous times when suddenly I went into remission where I have been for 3 months now. I was not on NPlate for as long as most people (5 months only) as for some reason it seems that I am in the 'persistent' category (9 months from diagnosis to remission) rather than the 'chronic' that most adults usually have.
I hope that this may be of some help.
Robert