Frustrated and confused

Hi All,

I have failed on prednisone, which made me extremely sick and Rituxan, which had no side effects but didn't raise my count either. My hemo started me on Npate in September with a count of 39. Since then my counts have slowly risen until November when they went into the hundreds. They went up and down some but not drastically. On December 16th my count was 209 - the highest I have seen - so my hemo said we would take a week off and see what happens. I had my appointment today and my count was 39 - I haven't been that low since I began on Nplate. I am so frustrated and sick of this whole mess at this point. I don't understand how my counts could possibly be down that low in a 2 week time period. My hemo said we will go back to every week again and see if they start to come up again. He again suggested taking my spleen out but I am totally opposed. I'm 69 and every thing I have read about it says the older you are the less chance there is of it being successful.

I was wondering if anyone else has had this experience with Nplate. Has it just stopped working? If so, does it start again? I hate having a count this low because I do get symptoms in the 30's and I hate my symptoms. And if I am failing on Nplate what is next?

Any thoughts or opinions would be greatly appreciated.

Thanks,
Renee

Renee:

You are not failing N-Plate at all! It's working perfectly. N-Plate is supposed to raise counts but it is a maintenance drug, meaning that you have to keep getting the injections for it to work. You've had a great response. The N-Plate dose should be adjusted to maintain counts of around 50k; counts should not be in the normal range due to the risk of blood clots.

It only stopped working because you stopped getting the injections. That is normal. People have gone into remission due to N-Plate, but it can take a few years.

For now, just be patient and stick with it. A lower dose might be better for you since you're responding so well.

Sandi,

It has been my impression, from reading various comments, that there seems to be often an initial surge in platelets, with a subsequent levelling off if the dosage is not reduced; also, a rebound effect when TPOs are reduced or withdrawn.

An analogy might be a production line, where platelets are being produced, and the TPOs grab some of them off the assembly line and rush them through development, leaving fewer platelet precursors in the production line. In time, the supply of undeveloped platelets gets depleted... fewer are available in the supply chain, at least until the system adjusts to the higher production speed, and levels decline from their highs.

Does this match your experience?

Hi again, Renee.
I started NPlate on October 3 and have gotten good response but no stability yet. Count was 155 yesterday, last week 296, week before that 120 - all on the same 240 mcg dose. That's the frustrating part to me... Why it won't hold steady when the dose doesn't change. Just waiting for the day when I'll find the right dose to produce a steady 50 or 60... the safe therapeutic range the manufacturer recommends. It doesn't bother me at all that success isn't happening fast. I can wait.

Rob:

I'd agree with the surge but you'd think that after 3 months, things would calm down a bit. Sorry, but I think I'm missing the point of what you are trying to say as far as the rest of it. I do have my duh days.

My main point for Renee was that N-Plate is working great for her, doing exactly as it should, but she needs to stick with it for now. Do you agree with that or are you trying to say something different?

Sandi, no, I am not saying something different, except possibly to add that changes are better made incrementally, or one may have huge swings in counts due to rebound effects. Although, from Janet's (Midwest's) experience, swings can be pretty bad anyway!

Sorry about the poor analogy. Analogies are supposed to clarify, not confuse. As the kids say: FAIL.

No...as I said, it's probably me. I'm having a slo-mo day, so I'll probably get what you said around 3 am.

Hi Sandi,

Since being on Nplate I have seen a steady increase in my counts. No two weeks had the same count but they went slowly from 39 up to 209. My hemo had wanted me to get up to 200 then would give me a dose every other week and, if counts stayed good, go to once a month. I have been receiving the same dose of 5 for quite a while now and it all was going so good. That is until I missed that one and counts went back to 39, which was where I was when I started taking Nplate. I guess I did not expect such a drastic decrease and felt it meant Nplate had stopped working for me. My hemo said we will go back to once a week and do a wait and see. But what you are saying is I dropped because of the missed dosage but will see an increase again now that I received a dose this week. No?

Hey Rob, I have no idea what you said!!!!!

Hi Janet,

It sounds like your counts have maintained a certain level which is great. I have never had the same weekly counts and have gone up and down like I usually do, but have maintained a certain range which was good enough for me. It took me from September when I started on it until November to even get into the 100 range. My hemo seems to thinks its an age thing - not that he's telling me I'm old or anything. But I think he is probably right. Things do work slower as we grow older. Good luck to you with your treatments

And thanks so much for all of your responses.

Renee:

Exactly, I think that your counts dropped because of the missed dose and I think they will go back up once you use the drug again. Dropping counts is a listed side effect of a missed dose and is completely normal.

Some people can go to every other week injections eventually, but it may be too soon for you to do that. No harm done in trying though.

Early treatment is full of unknowns. We are both at that spot now... early. Too soon to know the right dose, if it ever can be certain. From what I can tell, nothing about ITP is certain.

When you say a dose of "5", I assume you mean 5 mcg/kg? I've been at 1, 2, 4, and now 6 mcg/kg. You do know that the full, maximum dose is 10, right? You have a long way to go before saying NPlate is failing you.

Also, I'll be 65 in a few months. I responded fast and dramatically. From 15 on the day of the first shot, to 60 after a week, to 345 the next. If age has anything to do with it, you can't convince me. I think there are individual responses in every case, but they very likely aren't based on age. I haven't read anything on NPlate's information that suggests age is a factor, either.

Third, if you look at what poseymint says about more gradually titrating the dose in the following thread -
pdsa.org/forum-sp-534/7-treatment-general/28443-nplate-higher-counts-and-clots.html
- you'll see why entirely skipping a dose wouldn't be some MDs' choice.
In my case, when my count reached 345 on the minimum dose of 1 mcg/kg, it was halved to .5. The following week, count was 115. The dose was left at the same .5. The next week, count crashed all the way to 1. So... even halving a dose can have a profound effect. Eliminating it altogether might be too drastic in the early stages of treatment, before counts and doses find their level and stay there.

Try to be a patient patient. You'll get there.

How are you this week, Renee? Count headed up, I hope!

Last Tuesday I was at 155. Doc was happy with it being the third week in a row with counts above 100, so he decided to (Finally!) drop my pred dose but not alter the NPlate dose.

Today, I'm at 9.

Hi Janet,

I'm sorry your counts have dropped so low. I didn't realize you were also taking pred. Whenever I dropped in dosage when on that my counts always went way low.

This past week I had the flu and suspected that when I went to see my hemo today my counts would still be at 39 or perhaps even lower. He told me they are at 109 which I found amazing because when I'm sick they always drop. He left me at 5 with my treatment today. I think the next time he suggested we skip a week I'm going to suggest we go down to 4 instead. I agree I was too early in my treatment to not dose.

Let me know how your doing.

Renee

109! Good for you!
Maybe your MD learned a lesson... But you're wise to remind him what happened when he tried skipping a dose last time, in case it didn't quite sink in!