Platelet level too high?

Posted , 6 users are following.

hello all, 

It's been a while since I posted. Went back to work since the beginning of the year. Haven't felt that good for years. I think I have had symptoms at least 2 years prior to my diagnosis, fatigue, migraines, itchy feet. Since starting treatments, venesections and Aspirine, most of it is gone, no fatigue, no migraines and no itching, I feel so much better. I have venesections every two weeks now until my hematocrite reaches 45. The last 2 appointments, it was at 46, but my platelets jumped to 925 the last time. I am worried that my Dr puts me on meds because of my platelets. What is the risks of having high platelets? 

I don't want to put myself at risk, but I feel so good right now and I am worried about the side effects of medication.

1 like, 23 replies

23 Replies

Prev
  • Posted

    Wow, I knew that there was something dodgy about grapefruit but I didn't know that it was as serious as this.

    http://www.nhs.uk/news/2012/11November/Pages/Prescription-pills-and-grapefruit-a-deadly-mix.aspx

    Also, marmalade! Who knew?cry

    • Posted

      Hi Angela thanks for the research, good job..  And the marmalade is citrus based.  So let's all stay away from citrus products.  We,ve got enough problems and don't need anymore.  Zap

  • Posted

    Hi Marie,

    A high platelet count can lead to dangerous blood clotting if left untreated.

    Aspirine may not a good choice for your condition!

    Ropeginterferon alfa-2b, a novel IFNα-2b, induces high response rates with low toxicity in patients with polycythemia vera.

    You should think about using the new generation PEG-Interferon-alpha-2b to control your high platelet count.

    I think the new generation interferon may a good choice for a permanent cure !!

     Best wishes

    • Posted

      I am curious how you obtained this information about PEG etc. and

      is the source valid???  What country are you in.???

      Have you personally used the PEG to help with your platelet count.

      Are you also on other Meds..to help or doing anything regarding diet

      exercise??  Thank you for your response.

    • Posted

      Hi Frances,

      As far as I know, there are no FDA-approved first-line drug treatments for PV at present.

      Doctors may suggest use of a "Off-label drug" based on high quality research studies published in peer-reviewed journals and widely accepted throughout the medical community.(e.g., HU, Aspirin, etc.)

      However the Off-label drug just take temporary solution not effect a permanent cure! In some cases, the treatment of HU is lifelong.

      But Off-label drug may not a good coice for PV!

      The specific JAK2 V617F mutation is detected in >95% of patients with PV.

      And JAK2 V617F mutation is the key driver of PV!

      You can visit the ASH website to get the latest clinical Information about PV.

      Ppaer1:

      Impact on MPN Symptoms and Quality of Life of Front Line Pegylated Interferon Alpha-2a Vs. Hydroxyurea in High Risk Polycythemia Vera and Essential Thrombocythemia: Interim Analysis Results of Myeloproliferative Disorders Research Consortium (MPD-RC) 112 Global Phase III Trial

      Paper 2:

      Final Results from PROUD-PV a Randomized Controlled Phase 3 Trial Comparing Ropeginterferon Alfa-2b to Hydroxyurea in Polycythemia Vera Patients

      I think the new generation interferon may a good choice for a permanent cure !!

       

      Best wishes

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.