1. Community
  2. Blood & Immune System
  3. Polycythaemia Rubra Vera

I was diagnosed 3 months ago with PV, help need answers

Posted , 8 users are following.

leticia92303
leticia92303

I have already gonr through 2 phlebotomys, and today i woke up in severe pain, body aches in all my joints, can't get comfortable....what can I do

0 likes, 11 replies

11 Replies

  • harrishill1
    harrishill1 leticia92303

    Posted

    Hi leticia, I a 74 yr old woman diagnosed with PV about 4 yrs ago. There are not really many symptoms. I did get red eyes before being dagnosed. I tended to sweat from my head, especially when going walking outside. Being sore all over is not a symptom I've heard of.  Compared with xancer, we are lucky. We an ve out a normal life sppan as long as we are treated. I too had phlebs at first, but now I am on meds and don't usually need phlebs any more. Just tell your hematologist when you see him, any symptoms and he will try to explain . I walk daily, half hour each way. I usually go work out at curves and do zumba frequently. do yard work and clean our house, I often do take a nap in the afternoon though. You will do well, I'm sure. Good luck,

    harrishill 

  • clem19079
    clem19079 leticia92303

    Posted

    I take 3 different painkillers to help combat it. One of those is gabapenton. A gd massage helps, especially at bedtime wen u need to sleep. There can be a lot of misery with this illnes. I myself have not slept for 3 days due to discomfort. List everythi g thats bothering you n take to your family doctor. Sorry your having hard time at the min, its little comfort i know , but your not alone .
    • leticia92303
      leticia92303 clem19079

      Posted

      Thank you, I just wasn't sure if that was a symptom of PV, I beat thyroid cancer 5 years ago, and now to be told I have,this and that this one there's no cure, just taking this one day at a time.

    • clem19079
      clem19079 leticia92303

      Posted

      Theres no cure, but a lot can be done to control the discease and it will be monitored regularly. You can find online a list of possible side effects due to the discease. Though a lot of folk on here can add symptoms to that list, ie restless leg (due to a lack of iron) ,nausea, vertigo, lethargy, aching joints, nerve pain, headaches and the dreaded itching.
    • clem19079
      clem19079 leticia92303

      Posted

      Having had cancer you can take confort in the knowledge that because you get very regular check ups ( unlike other folk who are declared clear of cancer) msaning that any cell mutation woll be discovered early.
    • leticia92303
      leticia92303 clem19079

      Posted

      The nerve pain you are talking about does is it like fingers going numb, or feeling fat and does it send electric current through your fingers kind of like shocking yourself from the inside? The other day when I wrote was my first day of every feeling the joint pain, and that was awful, the next day the pain was still there, but not as bad, I did notice that my face was slightly red, but hands where really red, does that mean levels are rising again, I'm guessing I need to pay close attention to my body for signs. Also I had stated that I had Thyroid cancer in 2011, I was giving RAI 131, a very high dose over 350 mi combined, so they believe that is what caused my PV, I know it's not hereditary, but my grandmother was diagnosed with the Jak2 mutation the day I was diagnosed with PV.

  • randal_373
    randal_373 leticia92303

    Posted

    Hello Leticia.............Im new to the Group but anytime I have a Phlebotomy done it wipes me out for a couple day's............I dont have any severe pain  but I do have body aches. I've had PV for 10yrs now an it seems like the last year my joints have bothered me more but it could be due to my age, Im 52. As far as what you can do,  I make sure I drink lot's of fluid's (water) after Ive had a phlebotomy, they always pull 500cc of blood off me ( I've been told its about a pint ). I always make my appointments for Phlebotomys on Fridays that way I have the weekend to recover an be ready for work on Monday...........Hope you get to feeling better.

  • keith28441
    keith28441 leticia92303

    Posted

    Hello Leticia

    I will only reiterate what some of the other people have said in their responses to you in that bring this to the attention of your Haematologist. You may have intolerance to phlebotomies but having said that Clem in his reply suffers from pain, whereas I don’t. I did have other reactions initially to phlebotomies such as worsening of migraines with aura, dizziness and weakness but these improved considerably as my treatment progressed. I now mainly suffer from fatigue and tinnitus, the odd dull ache in my spleen and cold hands and feet. As mentioned however, I haven’t had the pain that you are experiencing. Having said that, Polycythaemia is very variable in that it affects people differently, no two people are the same.

    Hope this helps.

    Kind regards

    Keith

  • john17871
    john17871 leticia92303

    Posted

    Blood draws are a pain, literally. I started at 59% and have had 3 of them so far once a week. I feel better a day or so after each one, then it gets cloudy again. At the start, I did get similar symtoms, and I still have aches and pains. I'm down to 50% now, so I'm hoping I just have a couple more to go before they can start being spread out. I tested negative for the JAK2 mutation, so we're currenly trying to find a cause. Just had an ultrasound of my liver and spleen today, will get the results Thursday. Safe to say that I'm nervous about the liver as I used to drink a lot.

  • joycem
    joycem leticia92303

    Posted

    My doctor told me to take paracetamol or if it was very bad to take paracodol if it was particulary bad.  If you already take the aspirin to thin your blood, it's not a good idea to take ibruprofen as it will irritate the stomach lining.

  • harrishill1
    harrishill1 leticia92303

    Posted

    Hi Leticia. Maybe you have the flu. I had a flu shot a few days ago, and got sick from it. Was achy, etc. Never had that happen before. You shd drink plenty of fluids after a phleb, and rest. Don't lift anything heavy. I've never been achy or sick from a phleb. Hope you are feeling better soon.

    harrishill

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.