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is there an alternative to a vena section

Posted , 6 users are following.

tracy73193
tracy73193

Hi i have had several venasections over the last year my next appointment with the consultant is in february which is normally for about 3 minutes and very rushed as the dept is so understaffed and overworked.  I know life style changes have to be made, which i am trying to do, but have read that a low dosage of asperin could help. Any ideas

1 like, 21 replies

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  • monneywese
    monneywese tracy73193

    Posted

    Hi Tracy -  

    I have not had veni sections as I am looking for alternatives.  What lifestyle changes can be made?  I didn't know of any and would love to try some.  I did try the low dose asperin, but it did not work.

    An attempt at minor venisection failed as it sent my blood pressure soaring.  This really is such a mysterious disease.

    I recently saw a GP instead of consultant and she was most helpful as she felt that there were really only 2 things that could be offered - veni section and hydroxyurea.  She did not hold out too much hope for either and I did agree with her.

    Please let me know what is working for you and best of luck!

    M.

    • tracy73193
      tracy73193 monneywese

      Posted

      Hi been adivsed by my gp and consultant to stop drinking and smoking - fair enough - and reduce stress in my life!!!. Vena sections horrible but when your on same ward as people having infusions makes you feel even worse.  If you do have a vena section drink loads of water. Got high bp too think its all linked, only went to gp as I had pains in my legs and feet 3 years ago took another 2 years to diagnose .  Any idea how this  hydroxyurea works never even heard of it before today?
    • Yelowhammer
      Yelowhammer monneywese

      Posted

      Vena section is the best way ,I have had 9 off in 12 weeks,6in Spain 2 in Ireland,and one in the uk and I can assure you it is not painfull

      you must be on a bed and do not get up for15 minutes also the nurse must take your blood pressure at least 3 times after the vena section

      also you must drink 3 to 4 pints of water avery day

      good luck 

    • geoff-mpnfamily
      geoff-mpnfamily monneywese

      Posted

      Hi Moneywese, you know how to scare a man don't you: There are no known natural treatments for Polycythaemia Vera, however the closest you can get to is Interferon. (Pegilated Interferon) 

      The reason i say this is because we all (healthy or not) produce interferons to fight off deseases. This maybe something you could suggest to your consultant?

  • monneywese
    monneywese tracy73193

    Posted

    How can you reduce your stress if you h ave to stop drinking and smokingrolleyes!?  Just a teeny glass of wine??  Just kidding.  

    Hydroxyurea is a form of chemotherapy.  My thought - I agree with gp I saw that there is just not much known about this disease.  So that would make you and me lab rats.  However, if others choose these treatments, I think that is just fine and would be interested in how they work.

    I would tell your consultant how you feel, and that you will need more than 3 minutes - and document consultant's response to that.  I think 3 minutes is just wrong.  You have a nasty disease, classified as a cancer by many Drs., and you deserve to be heard.

    By the way, I also had pains in my feet and saw a foot Dr. in London - we got nowhere with that, but I wonder if there could be a connection.  The problem in my feet has now moved to my hands in something called Dupuytren's contracture.

    Let me know how you get on -

    M

  • harrishill1
    harrishill1 tracy73193

    Posted

    Hi Tracy, yes, my Hematologist told me to take 85 mg aspirin once a day. You shd ask him. Also, at first, they have you get venasections. But, once it gets a little under control, they usually prescribe meds. I am taking Hydroxyurea. Now, my blood is under control, and I no longer need venasections.
    • tracy73193
      tracy73193 harrishill1

      Posted

      Hi I have had several venasections and I know the hematology dept is very pushed in this area and i have been told there is no other medication for this condition My last blood test was hb 177 and hct o.47 means very little to me. I'm in the north east of england and what i was wondering is if treatment varies in different areas. Also how long it takes to get medication if needed this started with me over two year ago
    • geoff-mpnfamily
      geoff-mpnfamily tracy73193

      Posted

      Hi Tracy, 

      Your HCT is Your Haematocrit, and it is the total percentage of your Red Cell Count. It is also know as PCV (Packed Cell Volume) This measure is  more accurate than the RBC (Red Blood Cell Count) and your HB (Haemaglobin). 

      There are many different treatments avaliable but can be hindered by the type of Polycythaemia you have, these include, Hydroxycarbomide, Interferon, plus Pegalated Interferon & Ruxolitinib (I think i spelt that correctly and i beleive its currently on trial) 

      As For Asprin, Your Specialist / Consultent should have informed you that you need to be on an Anticoagulent unless there is an underlying reason for you not to be (For example a history of haemarages ) 

      There is also Warferin if you are alergic to asprin, & you can take Clopidogrel. Always speek to your GP for advice on the best anticoagulent avaliable for you personally.

      As for information on Polycythaemia, there is a lot more than many are aware. The trick is searching with the correct cryteria.

      Typeinto Goggle:

      - Myeloproliferative Neoplasm

      - Diagnosis, Treatment, Management & Prognosis Of Polycythaemia.

      - JAK2 (V617F)

      - JAK2 (EXON12) or (EXON13)

      -TET2

      - VHL / EPOR etc... 

      Google will start to learn what you like to search for. 

      For anyone taking Hydroxycarbamide / Hydroxyuria i have heard that taking it with Bannana and Yogourt helps reduce the nauseous feelings.

      I really hope that all helps :-/

  • Yelowhammer
    Yelowhammer tracy73193

    Posted

    Hi

    I have had 9 vena sections off in aprox 12weeks,my count was over 2000 and now at 1450 , it did go upwards to 1650 and my specialist did say  if I had a infection this would be likely to happen , I did have a chest and throaty infection at the time

    He also told me I should have 1vena section per week as my count is so high,

    obviosly only if my bloods are ok to do so

    3of my brothers have the gene and one brother had aprox 50 vena sections off

    before his ferritin or iron was correct . Now he has it checked once a year

    Henry Nolan

    • geoff-mpnfamily
      geoff-mpnfamily Yelowhammer

      Posted

      Hi Henry, I think your talking about your platelets with those numbers, are you on Hydroxycarbomide too? with your venesections?
    • Yelowhammer
      Yelowhammer geoff-mpnfamily

      Posted

      Hi Geoff

      I am not on any medication for Hemcromotoses ,the one you say sounds like med for pains,what is it?

      And should I take it,what are the side affects

      I have been to4 specialists and none of the mentioned it

      Regards

      Henry

    • geoff-mpnfamily
      geoff-mpnfamily Yelowhammer

      Posted

      They are one of the three main types of blood cells. You Have your Red Cells, WhiteCells, And your Platelets.

      The Platelets roll is to help the Clots form when one has an injury for example. If you have only got elevated platelets, then you should not need Venesections... 

      What tests have you had done to DX your PV?

    • Yelowhammer
      Yelowhammer geoff-mpnfamily

      Posted

      Do not understand ,to dx your

      Pv

      I have the gene for hemocromotoses

      Are you saying I should not have

      Vena sections?

      Henry

    • geoff-mpnfamily
      geoff-mpnfamily Yelowhammer

      Posted

      I think you really need to find out what you have, formally! Haemochromotosis has nothing to do with and type of Myeloproliferative Neoplasm. Haemochromotosis is an iron overload. I never mentioned this at all. 

      I really hope you get some answers soon, it is always good to have answers to your medical situation. Perhaps asking for your medical records as you go could be benifitial.

    • Yelowhammer
      Yelowhammer geoff-mpnfamily

      Posted

      Hi Geoff

      Yes I have diagnosed hemocromotoses the level was 2000

      After 9venasection in 12 weeks

      Iron levels down to 1450

      Henry

    • geoff-mpnfamily
      geoff-mpnfamily Yelowhammer

      Posted

      Hahaha, I really got my wires crossed lol.. sorry about that. I had to read the whole thread again to understand. Because we on Polycythaemia group I thought that's what you had completely misses that you had clearly written haemochromotosis.

      sorry to hear you have the HFE gene mutated. (Think I got that right?) That is a very high ferritin count ouch! Unfortunately with us PV folk, the haematologists like to keep us on the iron deficiency side.

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