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Polycythaemia Rubra Vera

Posted , 14 users are following.

christabel999
christabel999

Well its over two years since I have been diagnosed with this illness. I have attended hospital on a regular monthly basis and had venesection at just about every appointment. Have been on 1 tablet \"Hydrea\" since diagnosed. Suffer from mouth ulcers constantly. Over last year have had severe pain in my feet and toes - have appointment this week with Orthotics Clinic - not sure how that will help- but willing to try anything. Have basically battled on with this on own - there are no support groups that I can find in the North of Scotland. I do log into MPD Support (Guys Hospital London) but this is to far away for me to join any of their activities. I find people do not know or are not interested in what is wrong with me - illness it is not visible so it must be in my head!!!!!!!!!!!! I find that before my appointments for venesection I get strange tingling feelings in my shoulders and neck - like somethings trying to get through and it can't. Migraine headaches increase more than normal (I have had migraine since a child) generally just feel tired and unwell. Because of the number of times I have had venesection I dread having this done as it is much harder to find my veins and it can be really painful. Have had injections before venesection is tackled to numb the pain. Would really appreciate a chat with people in similar situation as at the moment feel I'm becoming a right old moan and I don't want to be. sad

1 like, 43 replies

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  • clem19079
    clem19079 christabel999

    Posted

    Ask your doctor to provide u with emla cream. You may be able to get dressings at hematological, big dressing are best. There is a vein on the outside of your forearm just below your elbow. Put a line of cream down the vein, pop on the sticky back dressing. Roughly an hour before your venesection. That will take the sting out of it for u providing u as the nurse to choose that vein. As for the headaches, neurophen plus help with the pain . Does for me anyway. As for the rest of your symptoms, their not in your head and if people around you can't be sympathetic then maybe you should give them a miss. Folk on here know what you are going through. Feel free to ask anything. Pv can be responsible for a lot if not all your symptoms. Best wishes.
  • peter98873
    peter98873 christabel999

    Posted

    I was diagnosed with PV over 10 years ago when I was immediately referred to my local hospital haematology, who prescribed hydroxycarbamide.  I took this for many years in increasing doses until Jan. 2015 when I was re-prescribed Ruxolitinib, which has been very beneficial so far.  The excessive dosage of hydroxycarb caused ulcers on the toes of my R foot.  In the past 2 yrs I have had three of these removed surgically to cure the ulcers and relieve continuous severe pain.  This has now vanished (for good I hope).  The hospital has been very supportive.  Since the outset I have regularly visited haematology  mainly for blood checks.  No venesection ever required.  I had the opportunity to discuss my problems with several eminent doctors who seemingly did not acquire much experience of PV under normal circumstances, due to its rarity.  I suffered many of the symptoms mentioned by others in this posting but most were of a minor nature.  Since the surgeries I have been totally free of foot pain, am walking well and active generally, but stiil visiting the local surgery nurses for dressings.  i sleep well, have an active mind and visit the hospital clinic once or twice a month.  A positive outlook and some further advice from the doctors/nurses has kept me going over the years.  The Ruxolitinib was trialled in UK hospitals and still is I believe.  I was on the placebo (Hydroxycarbamide) which was the only treatment available (best treatment) for PV at the time within the trial.  For me it was one or the other.  I generally feel very well.
  • Wully
    Wully christabel999

    Posted

    Hi Cristabel,

    As newly diagnosed as having Polycythemia, I cannot advise you on treatment but suggest you call the Chest, Heart and Stroke, Scotland (CHSS) online nurses for free medical help on freephone 0808 801 0899, during normal hours. They are fantastic. They may also be able to put you in touch with a support group near you.

    Gotta be worth a try.

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