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polycythemia vera

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frances20411
frances20411

I have had PV for almost 3yrs.and done fairly well on just phlebotomies and daily baby aspirin.  My doctor has it that I must take Hydroxyurea but I am totally against that due to the fact that a side effect can be severe nose bleeds.. i have had many severe nose bleeds which have taken a toll on my daily life.  Having nose packs always done at the ER and sometimes an antibiotic.  I could hardly breath, eat and could not go out in public to get groceries or attend church.  My HCT has been in the 50's

but now in the low 40's.  I have been told by one doctor to take a couple of  iron pills weekly and another doctor not to..who do I believe???.  Anyone have experiences with nose bleeds to share.  I am in total fear of a med that could cause nose bleeds no matter what the doctor suggest. 

0 likes, 13 replies

13 Replies

  • james03855
    james03855 frances20411

    Posted

    Sorry to hear about your PVR the reason that the consultant wants you to take  the hydro urea that it helps to keep the red cell AND platelets under control. The blood tests need to be right in all departments.venasection will lower the red cell count but not the platelets.A lot of people on the forum will tell you to question your consultant but to be wary about taking others advice about medicines as they can change the INR count . As you read through the posts you see that everyone is slightly different. Hoping this helps   
  • sheltielife
    sheltielife frances20411

    Posted

    I don't know what to say about the Hydroxyurea, but I can't understand you being told to take a couple of iron pills weekly. I was on iron pills and told to stop them and to not eat things with a lot of iron in like red meat etc.
  • monneywese
    monneywese frances20411

    Posted

    Oh my goodness, I have nosebleeds that also have kept me quite homebound.  It is sort of lonely, but one knows that in going out, a very bad nosebleed couldl occur in public or with friends - awful.  I have had PV for quite awhile and Drs. are doing "watchful waiting".  So you see, I do not take HU or anything and still have nasty bleeding.  It's an ugly disease.  Hope you and consultant can find something that helps.
    • frances20411
      frances20411 monneywese

      Posted

      Maybe this could help with the your Nose Bleeds.  I was told to use nasal decongestant (as it will appear on the label) followed by a swipe of vasaline around the outter edge of each nostril doing it daily...just the inside of the outter edge.  This has helped me.  I always care a small handtowel for those other monents. 
  • monneywese
    monneywese frances20411

    Posted

    Thanks so much, Frances - I hope the vaseline doesn't show too much!  Isn't it funny how we still want to look good despite this nasty problemredface?  I carry Kleenex, but a small towel is a great idea as the Kleenex is not equal to the job.  I do take nasal decongestant, so OK there.

    Hope you have a day with no nosebleeds or any other PV problembiggrin!

    • frances20411
      frances20411 monneywese

      Posted

      The vaseline does NOT show..the heat of your nose melts it and a doctor told me that the vaseline works up inside by itself.  Squeeze the nose a slight bit and wipe off the excessive very gently...very gently.

      Sorry! but Kleenex does not do it for me...either a thick washcloth or

      small handtowel come in handy for those emergencies.  Good luck!!

    • monneywese
      monneywese frances20411

      Posted

      Here's a laughcheesygrin - while I was reading your post, I had an awful bloody nose - 6 Kleenex's later (about 1 minute!) - I took your advice and got a washcloth - problem solved.  Thank you, Frances!
  • clem19079
    clem19079 frances20411

    Posted

    When I was first offered hydrea, I hedged around it for at least 2 yrs. Some folk take up to 30 a week . At the min I'might on 9 but next week that will rise to 11 or 13 a week. If you don't want to take then then don't , it your life. As for the nose bleeds , I haven't had them, but if I did and knew the regularity of the nose bleeds , then I would make a decision to try hydrea for a short while to see how they go. But I like you would not persist with them if I noticed a rise in the number of times I would have nose bleeds. You can stop this drug anytime , no one can force you to persist with it. The up side of hydrea is the tan, I after a couple days of sun shine am almost orange. That said I should be wearing high factor sun cream because of this side effect. There's no must. Think about it , take your time then if u decide to give it a go , just stipulate that your willing to try it for a short while to see how things go. Hydrea doesn't really have much of an effect on the symptoms you get , but you will likely live longer because of it. Best wishes and be well.
    • frances20411
      frances20411 clem19079

      Posted

      Wondering!! do you take a daily baby aspirin too???  Have you had any side effect from taking the hydrea???  Thank you for your reply.
    • clem19079
      clem19079 frances20411

      Posted

      75mg asprin. I take about 15 or 20 other drugs for ailment either directly or indirectly related to the disease.
  • alison_29881
    alison_29881 frances20411

    Posted

    My HCT is in the 50s and my haematologist wants it down to the 40s (I've read that 30s-40s is normal for  a woman) so I don't understand  why you are being offered this drug. I've had 3 venesections so far, and am on baby aspirin and 3L of water daily! I haven't ever had nosebleeds though.  I had no symptoms just found out through a routine blood test (I also have Parkinsons).  I do sweat a lot but thought that was due to menopause or the PD. I wouldn't have thought iron was a good idea though - doesn't that increase red blood cells?
    • frances20411
      frances20411 alison_29881

      Posted

      I understand that the HCT range for woman is between 40/44 and men between 44/46.  I also understand that when HCT reaches into the 50 this could be a cause for a stroke.  I have had from weekly to once a month venesection (in America Phylbotomy).  I was told to take iron once a week due to the phylbotomies (lost or iron due to that). I also drink 60 plus oz. of water most days.  My only symptom is redding in the palm of my hands.  I have had PV for almost 3yrs.

      Prior to being diagnosis with PV I had several severe nose bleed which I needed to be packed in the hospital...I conclude is due to too much blood (HCT).  I have been taking baby aspiring for years. I previous had 2 separate cancers and now in remission from both.

  • lijuan7002
    lijuan7002 frances20411

    Posted

    Hi! You can view the latest med information about PV  from the Dr. Richard T. Silver research.

    The 1st Annual International Symposium on Myeloprolifertive Neoplasms

    Saturday, Jan 9th, 2016

    "Is Polycythemia Vera Curable?"

    In his study, I think the PV is curable in the future.

    Best wishes and be well.

     

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