PV and blood feels like it’s burning.

Hello lauren,

Are you in UK and being treated by the NHS?

If so, have they done the test for the JAK2 genetic mutation yet? And if yes, have they said if it’s positive or negative?

How old are you (roughly)😉

What treatment have you been offered so far? Have they suggested aspirin and venesections or a drug?

I have primary PV (positive JAK2 result) and have been on aspirin and venesections for 2 years. I find when the time is coming round for another venesection that my feet seem to “fizz”. After the venesection they calm down again.

With so little information available it will be difficult to give you the answers you need.  Who did you see that gave you the diagnosis, was it your local doctor or did you attend a hospital.  Either way could you not contact them and relate your concerns for some medical advice.  It may be that your symptoms are not the result of your PV but of another condition.  PV is a very serious and rare disorder that requires expert opinions from the outset.  With this help available there are various treatments that can be administered but they are not usually given until you have been fully tested by a Haematologist who needs these test results to support you.   It is obvious that you need some advice quickly so I suggest you contact your doctor and seek an expert opinion.  There are a number of people on this forum who will be only too pleased to help you but without further information on your situation it will be difficult for them to offer a credible solution for you.  However, keep in touch if needed, I am sure something can be advised to ease your sufferings.  Best wishes.

Peter.

There are some very effective treatments to help alleviate your symptoms, but PV is different for every patient and so the treatment sometimes takes some trial and error to get the right mix. For some, the venesections are enough, others like me find Hydroxyurea (Hydrea) or other medications to be more effective.  Your Hematologist will help you through that process.  It is important to find a Hematologist who is familiar with PV - my first one  wanted to wait a year and see if my symptoms got worse before doing anything, I got a second opinion from an expert who immediately started me on treatment, and my symptoms improved almost overnight.

Bottom line - we all know it is hard to be patient with the process, but there is a light at the end of what may seem like a dark tunnel.

- Chip

Hi Lauren. The burning sensation with PV is that we overheat easily. Often when I clean the kitchen my head sweats and drips down my neck. This is worse when my meds are not controlling the red blood count. Right now, I don't sweat when cleaning the kitchen   but do sweat excessively when cleaning my car. It seems the more intense the job, the more I overheat. I am not at my worst stage, so my blood count probably isn't too high right now. As soon as I was put on Hydroxyurea, a lot of my symptoms stopped or lessened. Hope you have the same results. Also, the blood draws,( venesections ) helped. Usually they only do the venesections, at first and eventually you will only need the meds. So far, I've lived a normal life. Best wishes, harrishill

Hi Lauren, I've had PV for 14 years now. My only treatments are a daily baby aspirin and therapuetic phelbotomies, done every 2-3 months. I get the burning sensations in my head along with headache when I am over due for a phelbotomy. In fact, I've had the head burning sensations all week and I am going to have a phelbotomy today. This brings me relief. Something to think about as it does help me. Best of luck to you.