Newbie with Primary Polycythaemia

Hi everyone, I've just come accross this site and wanted to introduce myself. I'was diagnosed with PV around 4 weeks ago, I went to the doc's because I started to have dizzy spells and became short of breath when I went to the gym or just fast walking/rushing around, I also had headaches and sickness from time to time. The Doc's picked up on PV 4 weeks prior to a confirmed diagnoses and started treament before it was confirmed by the tests.. I was on Hydroxycarbamide and Asprin but now my blood levels are around normal ranges I've now been placed on Interferon injections 3 x a week. My HCT and HB were high and my Platelets were as I understand very high at around 1300. I just like to add that I so glad to have found you guys ...

12 Replies

  • Hi there NewBloom - for somebody newly diagnosed you sound very positive there which is more than half the battle. You're definately amongst friends and kindred spirits here though posts can be a tad sporadic and sometimes hard to keep track of but dont let that put you off because the support and general advice is sound. its worth backtracking the questions and subsequent responses etc if you can because you can gain alot by doing so.

    Anyway thats just my views but you can obviously make your own mind up as you go along. I very much hope you are coping well with the changes happening in your life at the mo. Cheers for now and let us know how you go on. .

  • Welcome to the community NewBloom.

  • Hi, you do sound positive, and the only advice I can give is to stay strong. There will be ups and downs, I think we'll all agree with that one! So, welcome to the community, we're a very special group...and very supportive of each other.

  • Welcome, positivism rules!

  • welcome newbloom, you got a pretty special GP there

  • Thank you all it feels great to have sooo much support ! Do I really sound that positive...... I'm not always, I've had a couple of bad weeks mainly when I first found out and was placed on Hu then again around a week ago, which was shortly after they changed my meds to Interferon injections (trail for 9 weeks) which I must admit isn't the best medicaiton I've ever used but will soilder on for the 9 weeks and see how it goes. One thing that does play on my mind is how the hell do I travel overseas with it as it has to stay in the fridge.......??? I hope all of you are coping well xx

  • Hi NewBloom, glad to hear you're positive. It does help! I have been on the Interferon injections since early 2009, and have taken them on aircraft. You can pack them in a coolbox, which is OK for most of Europe, but you need to inform the airline. Not sure about longhaul, but am sure the airlines would assist. You need to check your travel insurance regarding overseas travel before you book, and clear it with your doctor / specialist. Good luck!

  • Hi Tombs, Thanks for the info its been of help. Could I ask how you found taking Interferon, it does seem many people are on this type of med? I've only been taking this for around 4 weeks, It becoming easier to take the symptoms are better. Could I ask if you had any bouts of sadness in the early days? I've had a few bad days and not sure if it the meds (it does state this could happen) or if its me dealing with the new diagnoses?

  • I was lucky that the dreaded side effects only lasted for 2 injections! Can't say that the meds have caused sadness, as I do try and be positive. It certainly causes or aggravates tiredness / fatigue. I also struggle to fight off coughs / colds / bruising. This being due to lower white cells - known to be caused by Interferon. Good luck.

  • Hi NB,

    I've had PRV for six years, starting with the same symptoms you have. I am taking coumadin to keep my levels in check, which is working quite well, and since I take it in pill form I can take it anywhere I go. Maybe you can look into that possibility. i recently had a heart attack and had to go off the med until after my operation, but am back on it with no additional problems.

  • Definitely a big welcome and finding this site is the best thing I have ever done. Everyone is great in supporting one another!!!

  • Hi NewBloom

    Welcome to our exclusive club. I was diagnosed with PV 7 years ago, still only on aspirin and venesections and cant really complain. I have a great heam consultant and a caring day unit, who could ask for more?

    Hope you stay well and glad you found us.


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