Polycythaemia!!!

Just a note really, to say hello everybody...and fellow sufferers! I'm 65, retired 3 years ago & was diagnosed with PPP, in 2004; my GP thought he had seen signs of it in 2000 - the diagnosis explained a lot & was a bit of a relief in some ways. I've been on 1 grm of Hydroxycarbamide X 5 days & 1.5 grms X 2 days...and have been suffering from a poor sleep pattern (worse than normal poor sleep pattern) since the increase - about 12 months now. A steady increase in dosage since 2006 now! Really fed up & thinking I need to see the GP again to try & get it sorted, maybe CBT? Does anybody have any thoughts/remedies for this poor sleep pattern. I do manage to live a relatively normal life with the help of my wife, to whom I owe a great debt; she is, without a doubt my best buddy & nurse all rolled into one! Life would be OK if, I could manage this sleep problem so, again - any thoughts?

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  • Hello fleetpete. I have much in common with you except that I am female. I agree that the diagnosis was in many ways a relief. When you have been feeling ill and (in my case, running out of steam when exerting only small amounts of energy) for some time and have to explanation as to why it is good to be told that you can be treated and certainly my quality of life has improved greatly although in the bad times it leaves a lot to be desired. However there are so many people so much worse off. I am on the same dosage as you for the five days but differing then with only 500mg on each of two days. I have quite a poor sleep pattern, usually my limit is five hours per night and tend to go to bed later so that I can wake up when daylight has come (in summer anyway). I do get very tired about 4pm and again after tea, when I try hard to stay awake to reap the benefit later on. I don't now if it is the Hydroxy or the PRV which causes it as I have had a poor sleep pattern for years, being in a very stressful job before I retired. I can't give you any solution to the poor sleep pattern and only wish I had one myself but sometimes it is good to know other sufferers have the same problem.You are not alone!

    It is also good to hear of the wonderful support you have from your wife as that is the greatest support imaginable. I have moral support too but from the posts we sometimes see there are many who do not have the understanding which leads to good support. I sometimes try to put myself in my spouse's shoes and it can't be much fun for him either. He has his own problems, having had a quadruple by-pass three years ago and diabetes to contend with. We give each other support and at the time of his by-pass I found coping quite difficult as I did not know why I was feeling so ill, having not had my diagnosis at that stage and putting it all down to stress and exhaustion. We got through it though and will continue to. All the best to you and your supportive wife.

  • Hello to fellow sufferers! I have PRV (for 6 years) and have studied what there is online about it. I'm a 73- year-old Albertan. Certainly tiredness, even exhaustion is a symptom, plus itch and all the others. I'm on coumadin instead of the hydroxy, which works well enough. However, I too have a poor sleep pattern and wonder if it is another symptom not mentioned in the literature.

    When first diagnosed I had 13 phlebotomies (total 0f 7 1/2 litres drained out!), but still ended up with thrombosis and a stay in hospital, with many injections to my stomach. Also, this summer, despite regular exercise and weight control, I had a heart attack as well, so had a stent put in. Heart problems run in the family it seems.

    I don't think there is a really good way to handle the sleep problem. Sometimes I can simply stay in bed and try to be calm, and then I can go back to sleep. Praying for others seems to help at times. However, I do feel lucky that my situation isn't a lot worse, I must say.

    The itch is a constant problem. Recently a specialist gave me medication to take internally, but so far I don't see a difference. It can conflict with my coumadin as well. A bizarre aspect of my itch is that I can wash all the most necessary parts without gettting the itch. It comes on my limbs and torso. Anyone else have that situation??

  • I've same problem(PV,male, 52). Somebody tell me, "A smart person sleep in an hour how others in a night" I try to adapt.

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