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TOPIC: Is Promacta not effective if I crash after I am on it?

Is Promacta not effective if I crash after I am on it? 1 year 11 months ago #62228

  • mrsb04
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  • Diagnosed in 2014. I'm a retired renal specialist nurse
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I doubt 2mg a day for 5 days would be of any use at all. 89 is a good count and above Promacta target dose. I would be inclined to carry on as I was.

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62684

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Hi All,

I am not sure if I am doing this reply correctly. I am just trying to do a general post on this topic. I want to share my current medical update with all of you that have helped me sooooooo much during this issue and continue to be there for me when needed. It has been a difficult journey fighting with my Western doctors who kept getting angry at me and telling me I was crazy to believe that treating the underlying condition that triggered the ITP could impact/improve the ITP course. I am not sure how the future will go but this is the current status......

So, I am around 160,000 to 190,000 platelet count for a while now and have had no IVIG since 10/17 after having it every 2 weeks along with the dex bursts for several months (May 2017-October 2017) after being diagnosed 2 weeks after my return to Colorado from Costa Rica. My platelets went as low as 1,000-7,000 during those horrible 2 week cycles of IVIG/dex bursts. I surely go an infection or a parasite or virus in Costa Rica which triggered my immune system to go crazy and attack my platelets.

I am cautiously optimistic because that is all I can be.
I want to share what I am taking and doing.
Believe it or not only very little Promacta. :
Western Medicine: 25mg of Promacta three times a week.
Eastern Homopathics: Immunosupport-2 caps every day, Adrenal Support - 2 caps every day, skateliver oil (increases platelet production)- 2 caps every day,
and an antivirus homeopathic 1 dropper 2Xd, and immuno stabilizer homeopathic 1 dropper 2Xd.

The homeopathic doctor instructed me to quit gluten 100% in October which I did. And to have dairy only 2Xweek. He said goat cheese whenever is fine.
I also try really hard to keep my stress level down.

So I just wanted to share my story and give an update to my dear friends Sandi, mrsb04, hal, mom2boys, poseymint, dmann and all the others I forgot to mention who have saved my through the early months. I could not have gotten through those times without your advice and support!!!!!! I am not saying I am fine and over ITP but I am cautiously optimistic that I can stay stable.

My hope is the same for all who suffer from this difficult medical disorder.

Cindy
The following user(s) said Thank You: mrsb04

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62685

  • Hal9000
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Oh wow! With those numbers and that dose I'd be cautiously optimistic too. Either that or 'giddy', one of the two, LOL

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62686

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Great news, Cindy! It doesn't matter what did it....it happened! Thanks for checking in and I hope it continues!

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62688

  • momto3boys
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Yahoo, great to hear that you are doing so well after your rollercoaster with all of the treatments! I hope the stability continues!

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62689

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
  • Posts: 273
  • Thank you received: 21
Thanks momto3boys, yes it was insane!!!!!!!!!

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62690

  • Cindy1
  • Offline
  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
  • Posts: 273
  • Thank you received: 21
Thanks Sandi. I am very appreciate of your moderating this site and all the help you have given to me!

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Is Promacta not effective if I crash after I am on it? 1 year 9 months ago #62691

  • Cindy1
  • Offline
  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
  • Posts: 273
  • Thank you received: 21
Hi Hal9000,
I do believe your idea of the low dose prednisone to keep the immune system calmed down and not recycling to low platelets was brilliant and helped my body get past the horrible every 2 week IVIG/Dex nightmare. Thanks for thinking out of the box and all of your support! Here is to you being stable too!!!

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