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Polycythemia Rubre Vera

Posted , 7 users are following.

sarah22465
sarah22465

I am newly diagnosed with PRV.  I didn't go to my GP perhaps as soon as I should have becausexI suffer from a very painful condition called Complex Regional Pain Syndrome in my left leg caused by having 7 deep vein thrombosis in my left leg and it causes lots of symptoms and it took me a long time to decifer that something else was wrong but I have days when I just can't do anything as so weak and need to rest lots. I was on warfarin and I kept telling my Dr that the warfarin wasn't working, in the end I got drug induced hepatitis caused by my liver not liking warfarin so I now have daily Clexane injections.  At least these prevent me from getting thrombosis!!

I have a couple of questions.  I have a burning pain in the right big toe joint and it is quite painful.  Is this normal for PRV sufferers.  I had weekly blood venosuction but now taking Hydroxycarbamide 500mgs daily.  I am having monthly B/T and my consultant will contact me if I need more venosuction.  Even though my bloods are good 045, I am still getting bad  headaches on a regular basis pain in one eye, dizziness.  I feel sick when I wake in the mornings and I amdefinitely not pregnant as to old!

I'm not sure if it is the disease or the tablets that's making me so tired and weak, itchy and feel sick.  I'm getting quite down and feel it's a struggle to do anything.  I hate feeling so feeble and find it difficult to even cook a meal as for housework I just can't do it as feel so rough.  Some nights I don't get any sleep, which obviously makes the day harder, other nights I sleep all night and could just stay in bed all day.

Everybody is telling me to rest and do what my body wants but I feel bad not doing all the things I did for my family before Dx.

Even if my bloods are in a good range I'm still getting the side effects mentioned above and I thought if your blood is in range the side effects would go!!  This is not the case for me. Is it just me or our all PRV sufferers the same, and it's something we have to learn to live with.

My GP reluctantly gave me a script Loratadine to help with the itching and cyclazine to help with the sickness.  What drug do you take?

Sorry to ask so much but I've never heard of this illness before.  I'm in my late 50s does anyone know if my sons need to get a blood test to check they don't have PRV as I am sure I have had it manifesting for about 10 years as tired and weakness always been problematic for me.

Best wishes to all fellow PRV sufferers!

 

2 likes, 6 replies

6 Replies

  • DashaDazzler
    DashaDazzler sarah22465

    Posted

    Dear Sarah, Give yourself a Break' You have a Debilitating Disese the Hydrea will relieve the Pruritis (Itching) and get your blood reasonable but you are allways gonna have some days when you cannot do much Shortness of Breath and an enlarged Spleen Bloating after eating all part of the Deal" Cause's Tiredness, Exhaustion sever Lack of  consentration even from doing very little = Lack of Oxygen to the Brain, Lungs and the Heart' because your blood so thick it is moving too Slow to supply whats needed to these Main organs = Fatigue, Lethagy, Lightheadedness Confusion (Staggering) Nausea Pain in the Gut, Bloatedness it all causes "Depression" you will allways have the Days when you just stay in bed? Once you accept that and more importantly your Family accept it' you will adjust your life s accordingly? It's a very hard Disease to Explain even to Pronounce and people (Family included) Just don't Understand what your telling them or Believe or Accept that you will need to go to bed at 0630 pm in the Middle of a BBQ or a Party? When they accept it and you don't have to worry about what they think" things will get better the Hydrea should Help wait til it kicks in. But also watch out for a Severe Reaction to Hydrea. High Temp (103)  spasms and serious shortage of Breath I had this and I am now on "Ruxolitinib". Turns out I had a severe Reaction to Hydrea Took 2 Months to Occur as soon as you have the symptoms you will proberly NEVER have trouble all II am saying is if you do get an Ambulance immediatly

    The Pain in your Toes ankles, Joints is GOUT caused by the Hydrea also a Symptom of PVR, just get some anti inflamtory tablets from the Chemist or Gout tablets to ease it until the Hydrea Kicks in. The Itching is Part of the Disease" it's called "Puritis" it Itches in different Places, different reasons in different People "Nether Regions" Body, Legs. Arms Before the Hydrea and Ruxolitinib I had it so bad it nearly drove me insane (not Joking) Mine is "Aqua" Puritis every time I had a Shower exactly ten minutes Later I would get this terrible "burning Itching" in my Torso front and back it lasts about 15 minutes but the Hydrea Or Ruxolitinib should control it?  My sons Sister inlaw is only 35 and she has it and PVR but only if she gets  overwarm  if she throws the covers off or removes her jumper it will dwindle. She is currently Upping her Doses of Hyrea to compensate. Go online and Find PVR and Puritis symptoms and Causes "Non Malignant Lucemia" Scarred Bone Marrow too many Red blood cells. Print them and give a copy to your Friends and Family so they can understand and support you, good Luck Regards Dasha

  • nandrews
    nandrews sarah22465

    Posted

    Sarah,

    Sorry you have such a range of problems. I'm not sure I can offer much advice or encouragment.

    My PRV is blamed for causing a blood clot which led to a liver transplant (then two more transplants for other reasons). I do seem to suffer random tiredness and  they feel like I have been drugged so can't be avoided.

    Also I get fevers in varying degress but only major fevers once in every 4-5 months.

    Hang in there and hopefully in time the symptoms will diminish and the right drugs to control them identified. Keep on to your GP he is your gate to the medical world.

    Nigel

  • harrishill1
    harrishill1 sarah22465

    Posted

    Hi sarah, I seeyou'vehada couplke of great replies.I also want to put mytwo cents in. I have Polycythemia Vera with a jac2 gene mutation. When diagnosed 3 yrs ago I also was told I had gout.  It wasn't caused by meds cause Iwasn't on any. I've learned that Because I have Rheumatoid arthritis, I also have gout. I was put on allopurinol for gout and  I follow a gout diet Low in  protein and purines. IAM  now  on Hydroxyurea 2 caps two days a week and  one cap the other days . it  took a few  months for my hematologiist to adjust the meds properly. I feel  pretty well now, with time, hopefully, you will too. Best wishes,

    harrishill

    i

  • monneywese
    monneywese sarah22465

    Posted

    Hi Sarah -

    Just read your post today, and I wondered how you are doing now?  I have PRV, newly diagnosed a few weeks ago, and I am overwhelmed by this illness.  An attempt at phlebotomy collapsed one of my veins, so I am going for alternative medicine.

    Do let me know how you are doing.  I will be going to UK for a long visit in October or November, so will see haemotologist there and hopefully will get very good treatment.

    I do hope you are feeling better -

  • geoff-mpnfamily
    geoff-mpnfamily sarah22465

    Posted

    Hi Sarah,  sorry to hear your going through so much. 

    Regarding your query about your family being tested, it is very unlikely that will be nessasary,  however I was diagnosed with PV 7 Years ago,  and mum mum was just before Christmas last year. (That was quite a shock). It would be up to you and your family to approach a professional regards to that. There are a few genes that have a familial link. For Example the JAK2 ( EXON12) gene have last I heard 37 known mutations, but only 5 are linked to familial polycythaemia. 

    HU does not cause Gout, but it is very common in polycythaemia, as is the itching muscle and bone pain,  night sweats, blurred vision,  confusion, breathlessness,  dizziness, palpitations and iron deficiency are just some of the symptoms of having polycythaemia.  

    Drinking Plent - NO copious amounts of water with your HU may alleviate the nauseous feelings.  The HU should reduce the size of your spleen too.

    I hope you are feeling well now, and I hope your questions have been answered. 

    Your very welcome to join my closed support group on Facebook, we are called MPN Family uk based with a great bunch of individuals.  

    Edit: almost forgot to mention,  the feeling of being so ill is a combination of both the iron deficiency and out of shaped blood cell (refered to as distribution width) the out of shape cells can't do there job properly reducing the oxygen in your system.  (There is more too it than that but I'm typing this on my phone.  )

  • pete42091
    pete42091 sarah22465

    Posted

    Sarah

    After 4 years i have only started getting fatigue. All i do is plough thru it. As if its not there. Then after 1 hr im as good as gold

    But happening everyday now

    Just live like u dont have any symptoms.

    Get regular Venus Section blood letting amd asprin

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