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Starting Promacta 2 months 3 days ago #70639

  • Rhondale
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  • I'm an adult male, 61 years of age. Six years ago while during a routine physical my Dr ordered a CBC that showed my plate count at 30,000. I’ve bounced around from 2,000 to 30,000. Last check was 7,000. Tried Prednisone and Rituxan, starting Promact
  • Posts: 7
  • Thank you received: 0
I am 60 years old and was diagnosed with ITP five years ago during a routine exam. I’ve done Prednisone, Rituxan, IVIG, with no real significant changes, my last CBC a week ago was 7,000. I went to Mayo in 2017 and was told my “normal” may never be better than 20,000 and to work with my Hematologist to use Prednisone to reach an acceptable platelet count, maybe 25,000 to 30,000. I never could hit those numbers and have recently been experiencing more bruising than ever before. After five years my new Doctor ( I’ve since relocated), put me on Promacta as he is concerned with me being on Prednisone for so long. Hope it works.

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Starting Promacta 2 months 1 day ago #70646

  • richardg
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  • Posts: 3
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Very curious how it works out for you. Best of luck and keep us posted!

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Starting Promacta 2 months 1 day ago #70650

  • poseymint
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  • Posts: 593
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Promacta was designed especially for ITP and has been an excellent drug for many people. I have been on it 4 different times and I always responded to it bringing my counts up to the desired 40-50K range. Its not meant to bring counts to normal levels as there is more of a risk of blood clots when counts get over 100. I used to take it in the middle of the night as it has some food restrictions. Good luck with that.
Your doctor made a good call to get you off prednisone. It can cause bone loss, adrenal insufficiency and other damage over time.

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Starting Promacta 1 month 2 weeks ago #70730

  • Rhondale
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  • I'm an adult male, 61 years of age. Six years ago while during a routine physical my Dr ordered a CBC that showed my plate count at 30,000. I’ve bounced around from 2,000 to 30,000. Last check was 7,000. Tried Prednisone and Rituxan, starting Promact
  • Posts: 7
  • Thank you received: 0
Well, two weeks in to daily 25mg Promacta and my platelet count was 5 this morning. Have an appointment with my Hemo this afternoon. I suppose he will bump the dose, not sure.

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Starting Promacta 1 month 2 weeks ago #70733

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1811
  • Karma: 7
  • Thank you received: 516
It can take a while to kick in . I was started on 25mg because I weigh 45kg and my haemo thought I might respond to a low dose however after 6 weeks my dose was increased to 50mg which then took about a month to make a noticeable difference.
The following user(s) said Thank You: Rhondale

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Starting Promacta 1 month 2 weeks ago #70748

  • ImPatient
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  • Posts: 110
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Where I am the starting dose is usually 50 mg, but for me 25 worked well... I can't remember how long it took to work for me, couple weeks for sure. I don't know if I was overly careful, but I even made sure my water didn't have much more than 12mg calcium few hours before and after taking the pill and I don't eat 4 hours before, 2 after at all.

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Starting Promacta 1 month 2 weeks ago #70749

  • Rhondale
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  • I'm an adult male, 61 years of age. Six years ago while during a routine physical my Dr ordered a CBC that showed my plate count at 30,000. I’ve bounced around from 2,000 to 30,000. Last check was 7,000. Tried Prednisone and Rituxan, starting Promact
  • Posts: 7
  • Thank you received: 0
Bumped the dose to 50mg, will check in again in two week.

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Starting Promacta 1 month 2 weeks ago #70753

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1811
  • Karma: 7
  • Thank you received: 516
I make sure I eat my last meal of the day by 6:30pm and have nothing other than a packet of crisps afterwards and taking medication last thing before I get into bed.

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Starting Promacta 1 month 2 weeks ago #70755

  • Rhondale
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  • I'm an adult male, 61 years of age. Six years ago while during a routine physical my Dr ordered a CBC that showed my plate count at 30,000. I’ve bounced around from 2,000 to 30,000. Last check was 7,000. Tried Prednisone and Rituxan, starting Promact
  • Posts: 7
  • Thank you received: 0
I’m an early riser so I take it as soon I I get up in the morning. After an hour and a half or so I proceed with my breakfast. So far, no issues.

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Starting Promacta 1 month 2 weeks ago #70759

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1811
  • Karma: 7
  • Thank you received: 516
I’m an early riser so I take it as soon I I get up in the morning. After an hour and a half or so I proceed with my breakfast
I couldn't cope with that. I'm an early riser. Cup of tea within 5 minutes and breakfast as soon as I've drunk it then a long walk with the dog.

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Starting Promacta 1 month 3 days ago #70811

  • ImPatient
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  • Posts: 110
  • Thank you received: 18
I'm a late eater, that's why I take it in the morning too. And I like to feel how bad my pain from it gets so I can call my doctor about it if necessary, but I read most people don't have that issue.

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Starting Promacta 6 days 9 minutes ago #71009

  • Rhondale
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  • I'm an adult male, 61 years of age. Six years ago while during a routine physical my Dr ordered a CBC that showed my plate count at 30,000. I’ve bounced around from 2,000 to 30,000. Last check was 7,000. Tried Prednisone and Rituxan, starting Promact
  • Posts: 7
  • Thank you received: 0
OK, two months in with Promacta. Two weeks ago my count was 32 on 50 mg dose, two days ago my count was 42. Great improvement but the body aches and muscle pain are tough some days. I also have some swelling in my feet and hands. If this continues, I may have to go another route, really painful some days.

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