Frances 31

Frances - 

I have been taking it for over a year and have been very happy with it. No noticeable side affects, and it has helped greatly to get rid of the itching & burning sensations in my legs, as well as the frequent vertigo and loss of balance.  Previously I had been having venesections, but the effects would only last about two weeks.  

I still have the tirdeness and fatigue, but I find if I walk daily for at least 30 minutes it helps decrease the the tiredness.

Good Luck - Chip

Hydroxycarbamide is the current name in UK but I believe HydroxUrea is still used elsewhere.  There is a great deal of discussion on this forum on the usage of this drug.  Having used this for many years (I no longer take it),  you should be guided by your Haematologist who will be well versed in its use with PV.  You will probably be prescribed a small dosage based by your medics on your weight, height and other personal factors.  You should have no problems but do keep an eye on any side effects if you receive any, and discuss these with your doctor.  You will be constantly assessed in order that you receive the correct dosage.  Symptoms vary from patient to patient as each has their own biological make-up.  Most people who take Hydroxy seem to flourish quite well and no doubt you will learn from others on this forum.   Good luck.     

Peter.

My blood count has been stable and I havent needed any more venesections.

I have been taking Hydroxyurea for the last 2 months, I took one 500 gms in the morning and one 500 gms in the evening.

I do not have side effects, As I read, as long as this medicine is able to control your HCT % below 45%, and no side effect, the doctor will let you continue with it.....Richard Law

Hi Frances - I am a 47 year old female and live in New Zealand. I was diagnosed with PRV almost 2 years ago. At first I was only on asprin and getting a unit of blood taken regularly. My health slowly got worse and for about a year my specialist kept telling me that I should probably go onto Hydroxyurea but I kept saying no as I was not keen. By September last year I was reacting really badly to having the blood taken, my blood counts were really high and I was having some scarry symptoms similar to a minor stroke. My Specialist strongly recommend that I stop having blood taken and go onto Hydroxyurea - I finally said yes as I was so unwell. I have been on it now for 3 months and it was the best thing I did. I am doing really well and have no side effects. My specialist keeps a close eye on me which is really important as it does not work well for everyone. The key is not to be too stubborn like I was and put yourself through unnecessary suffering. It is worth a try - if it doesn't work for you then try something else.

All the best - Jo

I have been treated for Polycythemia over the last 19 plus years. I will note that I am not a big fan of Hydroxia. I have been managing it most of my duration with diet (not mixing iron and protein), exercise and phlebotomy.

My main issue was high Hemoglobin (red) and a high Hematocrit. Eighteen months ago my white counts started climbing out of control, which was the first time I had issue with my white count. I learned this is a common occurrence with our disease. So after consideration and good positioning from my doctor, I went on Jakafi, [b]https://www.drugs.com/jakafi[b].html. It took a while to figure out the right dosage, but a year plus later I am logging perfectly normal CBC with testing every two months.

Some Notes;

 Phlebotomies – reduce your iron and thin your blood after rehydrating. It will cause your platelets count to rise. It may also cause your platelets sizes to become irregular (MCH and MCHC) .

The side effect from Jakafi will cause the bone marrow to slow production, which is what you want. Due to this, the side effects can be anemia and you may gain weight. After the right dosage, I am not experiencing any side effects at this time.