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Pretty frustrated

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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5 years 6 months ago #68680 by Kelirae24
Pretty frustrated was created by Kelirae24
Hi I haven’t posted in awhile I’ve had itp for 17 years, with no treatment I’m
0 even with nplate I still drop the last 2months nplate is just not working as it used to, I’m very sensitive to nplate I had a stroke when I started it about ten years ago when I was 25 years old. I get crazy aura migraines if my dosage goes over 300mcg the last 2 months highest counts I had were a 23 and an 11 snd everything else under 5, I’ve been reading things about doptelet on here, scares the crap out of me seeing how high platelets went guess I’m just venting I’m crazy frustrated and really just wish I could get a remission at some point lol
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5 years 6 months ago #68682 by MelA
Replied by MelA on topic Pretty frustrated
Sorry you are having problems Kelirae! Would have been nicer had you returned to tell us you were doing great!

What else have you tried, I can't recall. I have a friend on Promacta and it is keeping his count ok, not great.

I know nothing about Nplate or Promacta or Doptelet or anything but WinRho & prednisone [the only 2 I've had].

Hope all goes well!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
  • Kelirae24
  • Topic Author
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
5 years 6 months ago #68683 by Kelirae24
Replied by Kelirae24 on topic Pretty frustrated
I’ve tried everything pretty much
Splenectomy
Steroids don’t work
Promacta didn’t work
Rituxan I’m crazy allergic
Tavalisse my anc and white count dropped to 1
Ivig works but only for a few days
Nplate all of a sudden doesn’t want to work
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 6 months ago - 5 years 6 months ago #68727 by Hal9000
Replied by Hal9000 on topic Pretty frustrated
Kelirae, in my humble opinion, one (preferred?) option would be to go back and retry Promacta. I understand that could be a problem due to liver/lifestyle issues.

Since you eventually became sensitive to Nplate, I don't see why that can't happen with Promacta. Like with Nplate when you started it, it may initially take a higher than normal dose of Promacta to get counts up. Or, it may not, and a typical dose of Promacta will end up working right off the bat. Who knows? My guess is that Promacta will work right of the bat.

Since you've been away, some newly diagnosed here have found that Promacta will not work at the normal 75mg max dose, but will work at higher doses. For example. Some hematologists, with ITP specialty, are now willing to prescribe up to 150mg dose.

If liver enzymes are the issue, it would seem Doptelet is an alternative. It is likely to send counts much higher than you want, however. One 20mg Doptelet pill is equivalent to 80mg of Promacta. LOL, it gives me a headache just thinking about that much Promacta.

On a side note. You initially had a steroid response, many years ago. I would venture to say. Even though you lost steroid response long ago does not necessarily mean that today you still have no steroid response.