Newly diagnosed with Polycythemia Rubre Vera

Posted , 3 users are following.

Hello

My name is Sarah, I am a 58 year old women who was recently diagnosed  with PRV.  I am so tired, weak and dizzy, my sight seems to be affected, I have headaches,and  my bones hurt..

i have seen a haematologist who puy me on the drug hydroxycarbamide 500 MSG 1 tablet a day.

I have had 2 pints of blood removed in the last two w,seeks and due to have another removed this week.   As my spleen is 16% enlarged I am booked to have a CT scan.

Due to having suffered DVT on 7occasions I am on Clexane injections 1a day..

i use Oilatum to shower in and take Loratadin to help stop the itchi  which help to a degree.

Can anyone tell me if I will ever get rid of  the headaces and feeling so weak , tired, and generally having  no energy to do  much.  Just having a shower I have to rest after!

I am beginning to feel very isolated and down and need to talk to someone who completely understands this  illness.  I am JAK 2 positive.

i have just come out of hospital after having a small clot on my lung, which I just didn't know whether to go to hospital because I already inject with a heparin but was in pain whIch was pluresy.    I am really scared I will have a stroke or heart attack.

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6 Replies

  • Posted

    Hi Sarah. I found it took a couple months after being diagnosed and treated for the meds to get working properly. I have PV and also have Jak2 gene mutation. At first I took 2 caps of Hydroxyurea per day, then the dosage was lowered to one a day later on. I now feel good most of the time, walk about 40 mins to an hour each AM, then work out at the gym and at curves for 45 mins per day. I do clean the kitchen or do the floors, then rest, sometimes nap an hour per day. I believe you will eventually begin to adjust better, and feel as good as I do. We can live a normal life span if we take care of ourselves. I do have gout, Rheumatoid arthritis,

    a little psoriasis. I am now 71 yrs old. diagnosed at 68. So, hang in there, and keep your docs informed of any new symptoms. Always get flu and pneumonia shots. Talk to you again,

    harrishill

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    • Posted

      Thank you for your reply.  It gives me some hope I will feel better eventually.  I cannot believe how poorly I have felt but it seems there is some light at the end of the tunnel. I live in Somerset Uk. 
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  • Posted

    Somerset, have never heard of it. I now live in Southern California. Used to live in Canada. I have to go for my morning walk with the dog early, before it gets too hot. However, this AM I left at seven, and although it was cloudy, there was no air, no breeze, and high humidity. I had to take a cool shower when I got home. My head was dripping sweat on the way home. Used to be not very humid here, but lately, it's been terrible. Good thing the gym is air conditioned. I get a free gym card with silver sneakers through Medicare. I go to curves on alternate days.

    Let me know how things go. I usually check every day.

    harrishill

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  • Posted

    Hi Sarah I also had to take two Hydroxycarbamide a day to start with and had venasections once a week for about 6 weeks then it went to venasections every other week and now I am down to about one every 3 months depending on my blood count.  My Hydroxycarbamide are down to only taking Mon - Friday so please look on the positive side as when I was first diagnosed I thought my world had ended and was so scared I would also have a heart attack or stroke. I also had enlarged thyroid and parathyroid had suspicious cells on them so have had one side taken out and am taking aspirin and thyroxin. 

    I feel much better than I did a year ago but am still very tired whilst at work (working full time) but am going to bed at 8.30 pm and up at 6.30 just about makes me get through the day.  As for the itching I also suffered with this but before I was diagnosed I thought I was alergic to my shower gel so kept changing it.  Now it is very rare that I get any itching

    Keep taking your medication and I am sure you will start to feel much better soon.

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    • Posted

      Hello Anna

      thanks for replying.  I saw my heamatologist last week and he seemed please with my progress.  I don't know how you cope working F/T.  I retired due to ill health before I was diagnosed so can rest when ever. 

      I am much more positive and will keep taking the hydroxycarbamide luckil I have no side effects.

      im now having monthly BLood tests at my GPs and seeing consultant in 3 months unless bloods need any treatment like venosuction.

      keep in touch as it's so nice to talk via email.

      Best wishes

      Sarah

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  • Posted

    Hi Sarah

    I don't know how I am working full time either but I am on final salary pension so need to work as long as I can.  Only 3 1/2 years to go to full retirement if I can last that long.  Have to work now till I am 64 and a half. Damn, should have retired last September until the government changed the women's date for retiring, so much for equal ops!! I thought they should have taken men down to 60 not raise us up to 65 ha ha. I am absolutely shattered when I get home. Two hour round trip drive and then working 7 hours is killing me but even my husband doesn't seem to realise how hard it is. Nice to hear you have retired now you can rest when you want to.  Are you getting very hot during the day?  I thought this was because I have thyroid problems (had one side out earlier this year).  I read harrishill comment that he gets hot so can put it down to prv as well as the thyroid. I am in Oldham near Manchester so a bit closer to you than Canada. Keep in touch if you can.

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