Supplements or not?

Hello alison,

I live in UK and have been learning to live with this weird condition since the spring.

My platelets are high but the venesections seem to keep everything else tied down.

I think the water is just to keep your blood thinner. It would obviously be thicker if you became dehydrated and would then be more likely to form a clot somewhere.

I read somewhere that dark chocolate is, like aspirin, supposed to keep the platelets from sticking together. Nice if you like to eat dark chocolate, which I do. Lindt do a 99% version which contains hardly any sugar.

Then I also read that sesame seeds might inhibit the formation of platelets so I began to buy wholemeal tahini paste. No idea if it is doing anything but it tastes great.

I drink a bottle of Fevertree tonic a day, just to wash the chocolate and tahini down.

I don't know what you could try for reducing your red blood cell count other than to go on some kind of a vegetarian diet which is lean on things that contain iron.

 

Hi Angela and Alison

l think the advice of eating a healthy balanced diet is sensible. I've been told that you'd have to eat excessive amounts of red meat and iron enriched vegetables like spinach to impact your iron levels to any real extent. Just don't take iron supplements.

Alison is spot on re the water. Even people who don't have PRV benefit from drinking a litre or 2 of water a day. Probably easier to do in Australia than England !!

I've had PRV now 26 years (i'm 56) and really nothing has changed in my treatment in all that time - just 3 monthly venisections, a baby aspirin a day and a yearly check up with my haematologist.

l believe as much exercise you can manage is also important in keeping on to of this condition.

Hi alison. It's ok to get venesections (phlebotomies) at first, but the hematologists usually put us on meds eventually. It is apparently not good to just have venesections for too long. I've been on Hydroxyurea for about 4 yrs now, and so far, doing well.

?I am a 74 yr old female, get lots of exercise, and take a nap sometimes. The hematologists usually know what they are doing. I trust mine explicitly. Good luck,

harrishill 

 

Re too many venisections. l was a blood donor from the age of 20 to 30 - exactly 40 blood donations before being diagnosed with PRV. I've had Venisections (exactly the same as blood donations) for nearly 27 years - 110+40=150

Blood donors are able to give blood for as long as they are fit healthy without any complications so unless venisections are done very reguarly l don't believe there is any real problem having them for as long as deemed necessary by the experts.

l'd rather have these than all these other potions that seem from the posts cause all sorts of side effects.

Hydroxycarbamide can be beneficial.  Its difficulties lie in the long-term usage with increasing dosages.  It is also known as Hydroxyurea but this really is the old name for it now.  I was taking this at the time of the change.  Properly advised, you can take this drug but if the side-effects should become uncomfortable then you would need to discuss this with your haematologist.  After many years of this treatment I had to come off it.  I am now taking Ruxolitinib which is more suitable.  Really, there are not too many options available beyond this but I understand more drugs will come on-stream from the researchers.  You will find your platelet count will go up and down no matter what you take or do.  As others have replied, just eat sensibly with some exercise that you can enjoy.  Everything in moderation, as they say.  Sorry to hear that you suffer with Parkinsons, I know how difficult this can be having seen a family relative having to cope.  Good luck anyway.

Not sure I understand everything you said. But re supplements and change of diet.

My Haematologist said I should stop my B12 and stop all the items I was taking to booast the B12 like green veg, and iron supplements.

I haven't taken B12 in about 3 years now and its right down.  I do sometimes eat green veg nowadays, I stopped for a while, and then I would get really dizzy when I ate them. but i like them, and I feel I need them. So I eat very limited amounts, and try to watch what I'm doing the following, in case I get dizzy.

 

Hello Alison,

Seems like you are doing most things right but do listen to your haematologist and most certainly discuss any difficulties with them.  They are the experienced professionals and see more patients with PV and other blood related problems than any other specialist, especially with the rarer diseases presented.  Like the previous  posting by HarrisHill I find I need look no further than the Haematologist to keep things on the right track.  Any queries I raise are well answered and informative.  I have trusted them for many a year now and have become to rely on their expertise in this field.  PV affects people differently  and deserves to be dealt with on a sole basis between the patient and their specialists, for when it comes to it they are the people that really matter to you.  Some symptoms seem fairly common but there are a number of other symptoms which arise that will not be common to but a few, and that is where you need the professional advice.  Good luck.