Count swings on Nplate?

Don’s been on Nplate for 4 weeks, counts were single digits for the first two weeks, then rose to 60”s, then last week 82, today fell to 23. Last weeks dose was 2mg, same as the week before. The only thing different was that he was on an antibiotic when his count rose to 60, is now finished. Doctor says there isn’t a connection, upped his dose today to 3mg. Is ups and downs on the same dose of Nplate the normal with this treatment?

Yes! At least in my case, counts can roller-coaster all over the place on Nplate.

I started on Nplate with a count of zero. I had small increase in my count ( 5,000 to 10,000 of so ) for over 6 months, then BAM my count shot up to 1,000,000 !! ( No kidding ) I was put on 1 baby asprin per day.

Ever since then, on a consistent dosage of Nplate, my count swings up-and-down widely from over 900,000 down to 80,000 from week-to-week and month-to-month. I've been on Nplate since December 2008.

My hemo has one other Nplate patient ( same as me - adult male ) who's count stays close to 50,000, the target count, so I guess, as they say, "your results may vary".

Thanks for the quick reply. Good to know that abnormal is really normal! By the way, I like your signature, Tad Moody.

yes, I had counts all over the place with NPlate too. I haven't had it in 2 months now...wow...it's been that long!
Tad-you've been on NPlate since 2008? Are you having any side effects?

I'm in my late 50's, so most of my life is one huge side effect!

This is strictly circumstantial evidence, but since starting Nplate, I've experienced:

Numbness and sometimes tingling in hands and feet, dizziness / vertigo, joint pain, muscle pain, episodes of hiccups that have lasted for several days, and I passed out once about a year ago (diagnosis was that my blood pressure was too low)

Then, I began to experience visual disturbance: getting weird light flashes and rainbow colors moving slowly across my field of vision from left to right, lasting about 5 to 20 minutes. A thorough exam by ophthalmologist diagnosed this phenomenon as an "ocular migraine" which, fortunately, is painless. (this is NOT a migraine headache).

But, for me, it's well worth these side-effects to keep that p-count up and not be all bruised, covered with red dots, and oozing all over the place!

Finally, speaking of headaches, I have not had one since starting Nplate! I'd get one occasionally, but not so far.

I'm just curious, were your counts on the high end when you had the ocular migraines? My non-ITP son (21) has been getting those for years.

As the mom of a 30 year old son with ITP, only diagnosed 8 weeks ago, all these comments about side effects and various count roller-coasters is actually quite encouraging! I'll try to remember: With ITP, abnormal is normal! You are all helping us learn to cope. Thank you

Try to think of it as "abnormal is the new normal" (at least for a while). Things calm down eventually. Some get remissions and those who don't manage to lead a mostly normal life anyway. You find that there is no choice in that matter.

Sandi wrote:

I'm just curious, were your counts on the high end when you had the ocular migraines? My non-ITP son (21) has been getting those for years.

Not that I have noticed.

However, the visual symptoms are believed to be triggered by "changes in blood flow to the area of the brain responsible for vision (visual cortex or occipital lobe)."

( From www.allaboutvision.com/conditions/ocular-migraine.htm )

So it may be blood-related. Question is, does a super-high platelet count somehow "change" the blood flow?

My hemo says there is an increased risk of a clot causing a heart attack or stroke when platelets go ballistic, so that's why he put me on aspirin during high counts.

Donswife: Dec of '09 I was on Nplate for 14 weeks. One occasion my count went from 206k to 12k the following week. There was too much variability and inconsistency with the Nplate. This is when I started to seriously consider the Promacta. Also in Dec '09 I experienced a blood clot in my right forearm. (Phlebitis). Then late Jan 2010 had a serious DVT in my right let. There is some data indicating a correlation between platelets and clots but not a causal relationship. Trial-and-error doesn't fit for ITP treatment. It's more like Trial-and-evaluation.......did it work or didn't it?

I would imagine that a high count would affect blood flow and slow it down.

Having APS antibodies, I know there is a chance my kids could have them. I have not had them tested because in the absence of a clot, they wouldn't be treated anyway and I don't want that black cloud hanging over their heads. I do wonder if APS antibodies are in some way responsible for my son's ocular migraines. APS can have many symptoms.

Wow, my hemo wants me to start taking nplate next week and after reading some of the side effects you guys are talking about I'm kind of nervous :huh: I am a bit curious if with all the side effects do you like the nplate better then the prednisone?

Don didn't respond to prednisone or other steroid treatment. And he had terrible side effects from steroids. He hasn't had any side effects from Nplate but he has only been on it for 5 or so weeks. Also, he's paralyzed so he doesn't feel if he has joint or muscle pain. His last count on Friday was 60 (up from 23 the previous week) so we're pleased he's in a safer place. If you respond to prednisone and the side effects aren't real bad, you might want to consider staying with it for a while. Don knows that he will have to take a Nplate shot once a week forever if he wants to continue to use Nplate. And once you stop, they warn you that your count will drop at or below what you were when you started. It's a long term treatment in my opinion, but a good one if other treatments don't work.