How tired are you?

Hi marie-jos,

Sorry to see you are having wearying symptoms.  These are not unusual with PV but you should consider speaking with your haematologist who should be able to address the problems, particularly as you feel they are worsening.  It is probably a question of getting your treatment at the right level that suits you personally.  This can take time to achieve but once reached the poor symptoms you suffer should reduce and become more comfortable.    We all have to deal with such difficulties from time to time but a small adjustment by the haematologist can often work well and minimise the problems you complain of.  Make sure you convey all relevant information to the specialist when you speak.  Make a few notes if necessary so that he has all the facts to work with.  Fatigue and listlessness are associated symptoms of PV but the correct treatment can control these.  It is easy to say, but try to relax.  There is no reason why you should not live a longer contented life as you suggest.  Best of luck.

Peter.

Hi Marie. I was finally diagnosed with secondary Polycythaemia. I did have phlebotomy's and was also very tired. In that long process of many test to get to a firm diagnoses my family doctor decided to give me B-12 monthly injections. That helped boost my energy and I felt and still do feel so much better. Your Doctor will be able to sort this sympton out for you and also your Hemotologist. Good luck and hope you get some help with your fatigue 

Ellen

Hi Marie-Jos -  I also had fatigue (particularly in the afternoon and early evening) when I was first diagnosed, but it has gotten better now that my doctor has me on 1000 mg daily of Hydroxyurea.  I also found that if I walked every day for one hour it helped lessen my fatigue.  When I started I could barely move my legs after the first ten or fifteen minutes, but I kept at it regardless of how slowly I was moving, or how bad the weather.  Now I am able to maintain a steady pace and the fatigue is mostly gone.  It has also lessened the pain in my feet, and the tnigling in my feet and legs is completely gone.

- Chip

Thank you all for your replies, I also do exercise everyday, but, lately it is more difficult since I'm tired and somewhat nauseous. I don't take any medications yet, I put my hopes in Jakafi that my hematologist and I try to convince my insurance company to pay for. I see my dr next monday, he will probably decide on an other med if Jakafi is turned down for a third time. As for B12 injections, I'll talk to my dr about it. 

Thank you again, everyone's experience brings something new to the discussion.

Hi Marie-Jo

I am a 47 year old female and have been diagnosed with primary PRV for 2 years now. I have struggled alot with heaps of different symptoms. For the 1st 6 months I was just on aspirin and ranitidine. I then was getting phlebotomies done regularly. I was getting this done for a year but I was getting significantly worse each time so it was decided I needed to stop tjis and go on hydroxyurea. I have now been on this for 8 months and am feeling better.

The tiredness is part of the disease and is something we have to manage. I would strongly suggest you not take any iron or even B12 unless it is prescribed and closely monitored by your specialist (not your GP) as this could have a significant negative effect on you. This disease is a minefield and you need to be under the care of someone that can help you live with this with as few complications as possible.

Jo