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Starting Promacta

  • 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
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4 years 8 months ago #70639 by Rhondale
Starting Promacta was created by Rhondale
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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4 years 8 months ago #70646 by richardg
Replied by richardg on topic Starting Promacta
Very curious how it works out for you. Best of luck and keep us posted!
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4 years 8 months ago #70650 by poseymint
Replied by poseymint on topic Starting Promacta
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.
  • Rhondale
  • Topic Author
  • Offline
  • 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
More
4 years 7 months ago #70730 by Rhondale
Replied by Rhondale on topic Starting Promacta
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.
  • mrsb04
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  • ITP since 2014. Retired nurse. 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.
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4 years 7 months ago #70733 by mrsb04
Replied by mrsb04 on topic Starting Promacta
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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4 years 7 months ago #70748 by ImPatient
Replied by ImPatient on topic Starting Promacta
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.
  • Rhondale
  • Topic Author
  • Offline
  • 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
More
4 years 7 months ago #70749 by Rhondale
Replied by Rhondale on topic Starting Promacta
Bumped the dose to 50mg, will check in again in two week.
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. 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.
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4 years 7 months ago - 4 years 7 months ago #70753 by mrsb04
Replied by mrsb04 on topic Starting Promacta
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.
  • Rhondale
  • Topic Author
  • Offline
  • 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
More
4 years 7 months ago #70755 by Rhondale
Replied by Rhondale on topic Starting Promacta
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.
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. 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.
More
4 years 7 months ago #70759 by mrsb04
Replied by mrsb04 on topic Starting Promacta
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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4 years 7 months ago #70811 by ImPatient
Replied by ImPatient on topic Starting Promacta
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.
  • Rhondale
  • Topic Author
  • Offline
  • 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
More
4 years 6 months ago #71009 by Rhondale
Replied by Rhondale on topic Starting Promacta
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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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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