PV queries

[Barb17]

Hi, there, I’m new here as I was diagnosed with PV in July, have Jak2 mutation and a massively enlarged spleen. My Haematologist is suggesting that I start on hydroxycarbamide and Allopurinol for gout -like pain in hands and toes. (I have had venesection 5 times and take aspirin daily).

Are these medicines well tolerated by others with PV? Do you get relief from PV symptoms such as fatigue, breathlessness etc I know that each case is different but would be keen to hear the experiences and tips of others.

Thank you in advance for any replies.

[Splb3317]

Hi Barb,

I have had PV Jak2 for 3 years. I had 6 venesections over a year to get my red count down and took Aspirin as well. My red count is now under control but as well as the Aspirin I take just 5 tablets of Hydrea per week to keep my platelets under control. I no longer have venesections. I have had gout from the word go, in my ankles. It was incredibly painful, and I'm so thankful that Allopurinol has stopped the gout completely. I have few symptoms of PV apart from some itching after a shower or if I get too warm. I feel tired after lunch sometimes, but have always had that to some extent, even when I was much younger

It is frightening when you are first diagnosed but, as many people on this forum will tell you, we get the illness under control and lead normal, full lives. Ask as many questions as you need to, of your haemotologist. The more you understand, the less scary it is. Come back to this forum as well. Everyone on here is so supportive and has been where you are now.

With all good wishes.

Sandra

[Barb17 in reply to Splb3317]

Thanks, Sandra, really good to hear from those with the same diagnosis. I start Hydroxycarbanide today, so here’s hoping for a good result! Warm regards, Barbara

[Raphael_UK]

Hi Barb, I have a slightly different condition ET, with Exon10. I have been on Hydroxycarbamide, for over a year, I take it daily with double dose every other day, ie 500mg & 1000mg. From what I have been told by specialists and forums like this is that it uniquely affects people differently. I can tell you how it affects me. First of all when you are told you need to take Hydroxycarbamide, a chemotherapy tablet & its cytotoxic (ie a group of medicines that contain chemicals which are toxic to cells) it all sounds a bit scary. But one thing I have learned with this illness is to remain calm and just learn as much as you can about it. You will also be a bit surprised that your GP may not know very much about PV. Anyway most of the time I feel ok enough to go about daily life, although I do get tired by about 5pm and have a power nap to get through the evening. For me the mornings are the worst I feel like I've been out on the tilles and had 10 pints a beer the night before. This passes after about half an hour to an hour. If you drink lots of water it goes quicker. I wish you all the best - Raff

[Barb17 in reply to Raphael_UK]

Hi Raff, thank you for your reply. Good to hear that large volumes of water are helpful. I started Hydroxycarbamide today so will monitor progress day by day, regards,

Barbara

[jane13]

Sounds similar to my initial stages with MPN post diagnosis. I took allopurinol and hydroxy because I did not want to carry the stroke risk implicit in not taking hydroxy. This did nothing for my symptoms! Good luck.

[MariaB27]

Hello Barb, I was also diagnosed PV Jak2 in July,I had 3 venesections and then started on Hydroxy and asprin. After a few DAYS of side effects I felt really good. After 3 weeks my consultant said my readings were very good. Stopped taking it for 3 weeks for another issue but expect to start again tomorrow and I don't have the fear I did at the start.

Best wishes Ivy