I Have a High Red Cell Blood Count,Have Been Having a Venesection For This And Feel Good After It! Now The Consultant Is Asking Me If I

[Malaga88]

Would Like /Prefer To Take Hydroxycarbamide! I'm Undecided,As There Seems To Be Side Affects With It! What Do You Think?

[karteeka]

hi malaga88- i am managed on venasection alone as i had a reaction to hydrox- the choice is yours but if regular bleeds is working for you and keeps your bloods within ok ranges- i take the view keep going and keep the hydrox as a backup= also working with doctors i am somewhat cynical of their motives at times- and its easier for them to prescribe a pill than to take the blood. cheers karteeka

[Malaga88 in reply to karteeka]

Thanks Will Post In The Future How I'm Doing!

[Malaga88 in reply to karteeka]

Thanks

[piggie50]

Hi malaga88,

I have PV and I have managed with venesections for the last 8 years. Other factors need to be taken into account as well as blood counts. I am 59 now and the risk of thrombosis and stoke increases with age. I don't know what age you are but I always agreed I would start taking it when I was 60. However I started hydroxy last Friday, and although I am only one week in I honestly have not had any side effects so far. I have every faith in my hematologist and he knows I am well informed as I have researched and read lots. He advised me that 6 out of 10 people have no or very few side effects, 2 have side effects and 2 cannot tolerate it. My feeling was that I would rather give it a go than have a stroke etc.

My advice to you would be to research, ask questions as you have here and then make your own decision.

Best wishes

Judy

[Malaga88 in reply to piggie50]

Thank You,I'm 64 Having Venesections Sure Does Work For Me,But Get Real Tired Just Before My Next One!

[LouisePRV Volunteer]

Hi

I'd just like to reiterate what Judy said ( hi Judy!) and say I was actually put on hydroxicarbamide four years ago, and have about 3 or 4 venesections a year as well which works fine for me ( fingers crossed, so far ! ) just read all you can, keep well informed, discuss things with your haematologist. Best wishes, Louise

[MichaelS]

I was put on Busulphan in 1983 for PVR, but soon changed to Hydroxy' and I have been on various doses of it ever since.

I am sure it has made my skin a bit fragile in the last few years and I have a reddish face, but that might be due to the MPN. Hydroxy' has controlled the size of my spleen and, with venesection, stopped me from having strokes and reduced the number of headaches.

Each person is different, but for me Hydroxy worked well. If your doctor suggests you take it then I think you should try it out and be aware of any side effects that it may trigger. You can always stop taking it if you find out that it doesn't agree with you.

I seem to remember my doctor telling me there is a problem with continual venesections in that the blood cells gradually reduce in size and therefore effeciency. This may be my imagination or fact!

Best wishes, Michael

[karteeka in reply to MichaelS]

hi micheal- yes your blood cells shrink and are less effective but the issue with repeated venasection is that it lowers your iron stores and you become fe deficient. i regularily have iron studies done to check my ferretin levels- and they are really low even tho my hb is about 150. that is why i am chronically tired. its reached a point where i am considering a 1/3 iron infusion top up, just to keep going.- im a midwife and we do them all the time in preference to blood transfusions. my concern is if i need surgery/have an accident- my hb comes back great but with a low ferretin, complications occur and doctors know nothing about pvr and its management- thats why i wear a medic alert bracelet so they are on notice all is not what it seems- cheers karteeka

[Malaga88]

I'm The Same As You I Feel Good After Venesections,There Could Be Side Effects With Chemo Tablets!

[Mardi]

I've had no side effects