I was misdiagnosed with essential thrombocytosis in January 2011. I was put on 1500 mgs of hydroxyurea per day until May 2012 when it was discovered that I had been misdiagnosed. I was re-diagnosed with polycythemia vera. I was immediately taken off the hydroxyurea. From shortly after the time I began taking the hydroxyurea I began experiencing malaise. To date, I continue to experience malaise. I've had every test imaginable to find a reason for the malaise. None have been found. I continue to experience malaise. Through the protestations of my family physician, my oncologist/hematologist, my wife and a host of other health care people, I believe that the hydroxyurea contaminated my body, and thus, the reason for the continuing malaise. I would welcome comments, suggestions and/or questions about how to treat the malaise so that I can either control it or get rid of it. It is very debilitating and challenged my quality of life every day.
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 Harrishill,
I was on hydroxyurea for 15 months at which time a new doctor said I had been misdiagnosed. I was rediagnosed with PV. The malaise started when I started hydroxyurea and I have still have it. I am not being treated with any other medication. I work out with weights, cardio and stretching every day. I am very healthy and very active at 74. The problem I have is the malaise. It's debilitating, to say the least.
Don
I was on hydroxyurea for 15 months at which time a new doctor said I had been misdiagnosed. I was rediagnosed with PV. The malaise started when I started hydroxyurea and I have still have it. I am not being treated with any medication. I work out with weights, cardio and stretching every day. I am very healthy and very active at 74. The problem I have is the malaise. It's debilitating, to say the least.
Don
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, Dus,
Thank you for your reply. I am sorry to hear of your condition. It appears to be challenging for you, to say the least. Although I am unable to technically prove it, I believe the malaise I am experiencing is directly attributable to the hydroxyurea because I did not have the malaise before I began the hydroxyurea. All of the research I've done on this doesn't give malaise as a PV side effect. How do you feel specifically when you experience maliase?
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 Harrishill,
It sounds like you have things under control. That is good. Thank you for sharing how you are doing with me. Take care,
Don
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!
Thank you for your helpful reply. It gives me insight into my malaise dilemma. Take care. I hope you are maintaining and feeling as good as you can under your circumstances.
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
Just read more think i understand more now
Based on my experience with malaise, it is a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify. My doctor recently diagnosed me with helicobacter pylori antibody. He prescribed 3 different pills that I have to take for 14 days. So far, the malaise, which I've had for 4 years, has disappeared and I'm feeling much, much better.
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.
HI DonaldLV
There is an heamotoligst in st thomas hospital she is also the head of haemotology department, i last time took her 2nd openion and that was accurate, thank god.
you can also email her about your situation her email address is
Claire.Harrison@gstt.nhs.uk
hope this will be helpful instead of getting wrong information from unprofessional people,
get well soon donald
Mohammad
There is a doctor who can treat you so that you will not experience these kinds of health issues. It is up to you to go out and find that doctor.
Thank you for the tip, Mohammad. I live in the United States and have finally found the source of my malady. It is being treated and I'm feeling much better. Your suggestions about getting second opinions is good. Everyone should do it.
Take care,
Don
Hi Donald,
Do you mind sharing with us the source of your malaise that you found out about? I have been on Hydroxyurea ever since I was diagnosed with PV. I have been experiencing malaise but my doctor isn't able to find why.
Thanks!