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Could I have PV?

Posted , 5 users are following.

Tills
Tills

My GP is concentrating on my very low Thyroid level and thinks this is responsible for my total exhaustion. 

However, my Haematocrit is 53, Haemoglobin 168 and I have many of the symptoms of PV - some of which could also be symptoms of Hypothroidism which I have had for 30 years.

My concern is that PV symptoms are being dismissed and so would like some advice as to whether I should try to pursue this or accept that these will disappear once my thyroid levels are raised with the increased medication.

Tilly

0 likes, 52 replies

52 Replies

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  • peter98873
    peter98873 Tills

    Posted

    Thank you Tilly.  I am sure that those who offered their advice will be pleased with your news.  PV is not an illness one would wish to acquire.  As for your thyroid, I know only too well from a close family member just how this can affect ones well-being.   It can be mistaken for Polycythaemia due to the utter exhaustion it can provoke.   It can be controlled as you will probably know but cannot be compared to Polycythaemia which is much rarer a disease and generally more serious.  Thyroidism is very variable too and also needs regular medical checks as I know.  There are some very good medical treatments available which will deal with this disorder.  Forget any thoughts now of PV and concentrate on getting your thyroid in order.  Best wishes for your future.  I am happy to have been able to assist.

    Peter. 

  • margo82957
    margo82957 Tills

    Posted

    Yes,I have the jak2 cell. I am on the medication called JAKAFI. Anyone ever heard of it? 5mg twice a day. I was diagnosed with PV 2 years ago. Of course not curable,but hopefully controlled. MY worse symptom is exaution and night sweats. Please reply.

    Margo

    • Tills
      Tills margo82957

      Posted

      Dear Margo,

      I am so sorry that you are exhausted and having night sweats.  I can identify with the exhaustion!

      As you will see from earlier in this thread, I have been told that I don't have PV.  Whilst this is a huge relief for me, another route will be investigated by an endocrinologist.

      I regret that I can't offer you any  help with PV except to say that this site is brilliant at providing information and support and I am sure that someone will come along soon with some advice.

      Good luck and best wishes,

      Tilly

    • peter98873
      peter98873 margo82957

      Posted

      Hello Margo,

      Youn seem to have been prescribed Jakavi (Ruxolitinib) very early in your treatment.  Usually this is  prescribed after many years of treatments.  Maybe it is because your doctor deemed you needed it following your diagnosis.  I too take Jakavi (UK) and have done so for almost 4 years now.  I assume from your comments that you have the JAK2 mutation of PV and this is well treated by Jakavi.   Your dosage is low so should not cause any real problems but exhaustion and night sweats do represent side effects of PV.   I would suggest that it is well worth discussing these effects with your doctor who should be able to assist you.  I just wonder if the use of Jakavi is perhaps not a little premature for you.  Have you previously used venesection treatment which is the usual first treatment following an initial PV diagnosis but of course if you have already received the JAK2 mutation diagnosis then that could explain your drug use.  Venesection is a milder treatment without some of the effects from a drug such as you are receiving.  Drugs used for PV do have some unwelcome side-effects but not everybody gets them.  I hope you manage to get some answers to your difficulty.  Best of luck.

      Peter.

    • margo82957
      margo82957 peter98873

      Posted

      Yes, Peter you are so right. I was on 10mg twice a day,but I was so exausted with night sweats etc. that we had to lower ths dosage. Still get the night sweats occasionally.

      The JAKAFI lowers both red and white cells. WE want to lower the whites 20,000 but whed the reds get low we are in transfusion territory UGH. Thanks for your input. It is a hellava disease!!!!

    • peter98873
      peter98873 margo82957

      Posted

      Hi Margo,

      Thanks for your reply.  I can understand your dilemma with the cells but the main culprit is the oversupply of red cells by the bone marrow.  Certainly the white cells will be affected but these are as you know, regulators of your immune system.  It is not uncommon to have a low white cell count and a low red cell count which is what seems to happen with Jakavi.  This drug takes some time to kick in with your system and until it settles down to give regular readings.  However, Jakavi does control the red cell count and in my own case the white cell count has remained stubbornly low but in more recent times has been more normal.  Prior to Jakavi I was given Hydroxycarbamide  which played havoc with my system.  Jakavi took time to settle in and after a fairly lengthy period brought my counts back to normal where they now remain.    So I would recommend you just keep an eye on things and let the Jakavi work itself for you.  For some people it can be earlier rather than later.  It just depends on your body system.   It has been a great drug for me and it has for others too.   PV is so variable a disease that each patient has a different tale to tell.  I wish you well.

      Peter.

    • margo82957
      margo82957 peter98873

      Posted

      Thank you so much for the good advice. My white cells shot up to 40!! This is because I have been on prednisone for 2 weeks says my Hemotologist. my red cells etc are all abnormal,but I feel OK and the Jakafi is keeping me going.

      It is a heck of a disease.

  • margo82957
    margo82957 Tills

    Posted

    Thanks for the good reply. MY whites shot up to 40!!

    My hemotoligest says it is because I have been on prednisone

    due to a bout with a chest infection. It is so hard to stay relatively healthy!!!

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