Posted , 4 users are following.
Hi I've recently been diagnosed with PRV and I've had 9 Venesections in the last 10 weeks to try and get my blood count down but after the last Venesection I've started to get tingling in my toes, and I was wondering if this is a side affect of the treatment. Thanks
0 likes, 6 replies
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angela_o..o glenn_76104
Posted
That is a lot of blood loss in a short space of time for your body to adjust to. A lot of iron gone from your system. If you look up “iron deficiency and tingling” on Dr Google you will see that there is a link.
Without your complete readings from your various venesections it is hard to say how you are doing but it sounds as if your doctor’s are going in there with a mission.
If you like, you can contact one of the team at the hospital. Are you in UK? If so, you will probably have been assigned a nurse who can act as an advisor.
The one thing about PRV that I have noticed is that we all have different symptoms with different degrees of annoyingness and each of our symptoms comes and goes over time. You knock one on the head and a different one pops up.
It’s a PITA but not the end of the world.
glenn_76104 angela_o..o
Posted
Hi Angela thanks for the reply I am in the UK and lucky to work in the hospital where I'm being treated so I'll pop in and ask
peter98873 glenn_76104
Posted
Hello Glenn,
It is early days for you I must say but as has already been pointed out it is a very inconsistent disorder and it does take some time to get the PV under medical control, which is essential. So a visit to your hospital doctor or haematologist is needed to attain this as has been suggested. The symptoms can vary from patient to patient and are often affected by the treatments recommended. You'll need to undergo differing tests before you settle into a routine but it seems you already have the hospital facilities to hand. There is currently no cure for this disorder which is caused by an over-production of red blood cells by the bone marrow. However, it can be effectively treated and this is why it needs early attention by your medics. Treatments generally vary from patient to patient, and are designed to treat each patient individually. What is effective for one does not make it suitable for all. There are a few booklets available from NHS hospitals dealing with PV and other MPN diseases to which group PV belongs which are very suitable for patients and can answer many questions that may arise. You will gather that there are a number of existing sufferers on this forum who are well placed to use their experiences and make life a little more welcoming for you. Look after yourself as you can for PV is a very rare and serious disorder but very treatable. I wish you well.
Peter.
glenn_76104 peter98873
Posted
harrishill1 glenn_76104
Posted
Hi glenn76104. We are told to take it easy after a venesection. Tingling could be a side effect of the venesection. However, don't worry too much about it. Eventually, your hematologist will probably put you on meds rather than the venesections. They don't like to continue with just venesections.I have been diagnosed for about nine yrs now, with PV. My hematologist has increased my meds and lowered them a few times. So far, I am still on Hydroxyurea. I live a normal life, and am doing well for 76 yrs old. Best of wishes, harrishill.
glenn_76104 harrishill1
Posted
Thank you that's very reassuring