polycythemia vera and malaise

Hi, Donald V. I was diagnosed 3 yrs ago with Polycythemia Vera. I've been on Hydroxyurea ever since. It works well to keep my blood at a normal level. Malaise, as I understand it, means you are very tired. Hydroxyurea lowers the immune system a little, and lowers the red blood cell count. This may make us tired. I am 73, walk an hour each morning, then usually work out for another hour at the gym. Sometimes I garden for a couple of hours instead, clean the kitchen and floors for an hour. Then, have lunch, and may take an hour nap. Most of us with PV do need a nap sometimes. Too bad you can't take the Hydroxyurea. I feel it works very well. Are you treated with some other medication?

Harrishill

I was diagnosed earlier this year with polycythemia vera but I am not on Hydroxyurea but being managed with Venesections.  I suffer with severe tiredness, although not all the time, which I was led to believe was a symptom of the conditions and nothing to do with medication.  However, I still managed to lead a reasonable life  and go to the gym etc but when the tiredness overcomes me I just have to give in and take nap.  Suggest you just do the same.

Hi, I was diagnosed in 2009. I suffered with seemingly uncontrollable hypertension since 1995. I have been on hydrea at 500 MG a day with it increasing to 500 MG /1000 MG a day on alternating days. The first year after diagnosis, I was having phlebotomy about every 2 week's with minor adjustments to the dosage as I went along. My last blood draw was in July. I could have had another draw in September as my count was just under the threshold. I am ready for a blood draw now as my level of tiredness has grown considerably along with skin redness, itching, and other symptoms. Maybe time for another RX adjustment? ? As for the malaise, I nap even though it doesn't seem to recharge me enough as I would like. I feel the malaise is more attributable to the PV than the hydrea. Hope you can manage to do better.

Hi DonaldV. I replied earlier, but am very interested in your malaise. Everyone on this site feels malaise. We don't always mention it, but if asked, we will say, yes, we do feel malaise. I remember before being diagnosed, feeling so tired that I began taking B12 vitamins. Also, sometimes we may be on a cholesterol lowering statin. These can also make one feel tired or ill. Many of the meds we take can have this effect. However, I tend to believe PV causes my malaise. A daily nap makes me feel better though. I am very active for being 73. It is extremely necessary to take the Hydroxyurea to lower the red blood. it also thins the blood and prevents blood clots which can kill us. Hope this helps.

harrishill

Hi Donald, Thanks for replying so quickly. My experience with malaise specifically includes joint pain, shortness of breath climbing stairs or similar physical exertion, flushing of skin, usually by 1100am. It seems to have a direct connection to progressivly higher hematocrit numbers during the passage of time between each phlebotomy. Currently about 5 month's time. As I said, I'm overdue now and expect to have one tomorrow...after which I'll feel markedly feel better until my numbers creep up there again. Why not just increase the hydroxyurea, one might ask? That's already been tried and resulted in borderline anemia. THAT made me very tired. Anemia also caused malaise but was much more chronic than achieving the"happy balance" I currently enjoy. By that I mean taking hydroxyurea knowing it's not the complete cure, and visiting the 'vampires' not quite as often as I was at the outset. I hope this explains why I feel That my malaise is more directly affected by the condition my blood is in. Too few RBCs--tired...Too many RBCs--tired as well, but dangerous in more ways. All the best to you!

Hi, donaldv . Thanks for your reply. I just want to mention for all PV patients, that not only statins taken for high cholesterol can make us tired and ill, but also some vitamins and herbal remedies I was taking tumeric capsuls and fish oil supplements I later learned that the fish oil thins the blood, and Igot bruising. The tumeric is too strong to take more than one a day. I use this for arthritis. now, I always look at what vitamns I am taking if I feel sick.

Best wishes Donald V.

 

What is malaise i could just google it but everyone is different 

thanks donald so pleased your new medication seems to be working. My main problems are tiredness, pains in my feet and legs loss of appetite (lost 2 stone over 18 months).  At the moment i will just have to wait for next consultant apt. The day care unit are brilliant but the consultants are inconsistant due to severve cuts in nhs.