Hi my mother was diagonised with prv oct 14 after a heart attack . Im really worried about her. She is 67yrs old. At first she had lots of venisections but her platelet level started to rise so they have just started her on hydroxyurea one 500mg tab a day she is on her tenth day and seems ok , no bad side affects , we seen the consultant today and he says the levels are slowly coming down but has noticed a change in her liver ??? im just wondering has anyone else had these problems due to this drug ? Shes had a bone marrow biospy in the past which came back ok , im really worried that this is developing into something worse , she does not know the full extent of this condition as she is a real worrier!! Any tips on what i need to be asking the doc ? Many thanks x Nicola
Hi nikky, Sorry to hear your mom has been ill. I was diagnosed almost 4 yrs ago, with Polycythemia Vera. It's different from PVR simply because mine is caused by a gene mutation. However, the symptoms and treatment are the same. I've been on Hydroxyurea and it works well. Since PV causes blood clots, enlarged liver and or enlarged spleen, the Hydroxyurea works well. it thins the blood, and helps prevent blood clots. I've researched online, and learned that we can still live a normal life span with this disease. I am energetic mornings, and go for a walk if it's not too hot, then work out at curves. I have been weeding a huge back yard for a week, at 6:30 am before it gets hot. I then will sometimes go to curves, or take a day off and read and rest all afternoon. However, most of us with PV need an afternoon nap. I usually feel very good. The Hydroxyurea got rid of the night sweats. I can't tolerate being out on a hot day though. I do yard work only on cool mornings. Have a positive outlook. I am 73 now, and doing fine. Your mom can too. Best wishes,
harrishill
Hi harrishill
Thank you so much for your positive reply , we live in ireland so the heat thing wont bother us to much !! Shes never tired thank god , ill be on here seeing if I can get more information on this forum. Thanks again x Nicola
Great!!! So glad you feel better. There is lots of info online.
harrishill
I was diagnosed with prv almost 4 yrs ago .The symptoms vary from patient to patient and week to week .Avoid taking warm bath in the evening as most patients suffer itching with no sleep. I am presuming the GP is doing liver tests. The spleen can get enlarged also. As Harrishill says most days can be ok others can be very tiring. Hope you get good results .I too live in Ireland
Sorry to hear your mother has PVR. This is also associated with heart attack and strokes. I was prescribed hydroxycarbamide (formerly urea) which controlled PV well particularly platelet count. As time went by the dosage was increased to maintain control and I had to come off this drug and onto something newer. So keep an eye on dosage increases, usually after some years. As has been mentioned PVR can affect people differently. You mom will obviously need constant medical review. Don't be deterred from asking the haematologist any relevant questions that arise. The outlook can be very promising providing you follow the proper medical advice. I must say, I have always lived a full life with PVR for many years now. Use a commn-sense approach and let the medics do the worrying. Good luck to you and your mom.
Hi James
Thank you for your reply. At the minute she is seeing a consultant and the hospital so she is being monitored on this hydroxyurea drug. At the last appoinment her blood readings were off so we are back in 3 weeks to see why. I hope to chat to him alone so i can get more info , They never really explained the result or outcome of this condition to me so its a constant worry , i hope to get answer soon. Smetimes looking it up on google can be scary ! .
Hi Peter
Thank you for your reply, People have been so kind and reasuring on this forum, I hope to chat to the doc and get more info soon.
Hello, you need not worry about your mum having prv , I was born with pv I'm 57 and still upright. Your mum's condition is treatable . The side effect from hydroxerea can also be treated. Some folk cope with the symptoms better than others , your mum may have to take a hayfever drug for itching though she should avoid iron supplements even though she may be low in iron. Low iron I as far as I remember can bring on restless leg syndrome, for this I take quinine. But with your mum having a heart condition , her gp may opt for another treatment. I'm also in Ireland , belfast to be precise. I not a million miles from u. Reqardless what anyone says your going to worry, but bare in mind your mum's condition has been diagnosed and is treated. The hospital my chose to venesect as well as proscribing hydra, in order to quickly stabilise her condition. Try not to worry to much.