Good to talk

[Poppy6060]

Hello I have had PRV for 18 months now I am so pleased to find this site has I don't know any one with this. My doctors and at hospital are to busy to talk . I get a lot of headaches and pressure in my nose does any one get this I get very tired and boy am I ichty . I am on aspirin and have venesection about every 12 weeks .I could go on tables but I am worried about side affects but would I feel better I take pain killer every day I know this is not good but don't know what else to do some days I hurt and ach all over but is that just old age coming on thanks for listening so good to talk poppy 6060

[Hidden]

I have PV too Poppy. I don't think it is really acceptable that your medic are too busy to talk when you have so many problems and side effects. It is easy to forget all the questions you have when you feel pressured. Print a copy of what you have posted and take it with you. I had and occasionally still have all the same symptoms as you. I got my diagnosis 5 years ago. From the start I have been prescribed hydroxycarbamide which I at first was very frightened about. However it has made life much easier for me. The pain you describe was the same for me a d the itch. Although I don't have the nose pressure I do get visual disturbance from time to time. I can though, go symptomless for quite long periods now. I watch my diet where iron and B vitamins are concerned and drink loads of water. Don't be satisfied until they give you help to improve your quality of life. Good luck and kind regards. X

[Poppy6060 in reply to Hidden]

Thank you for your kind reply have a good day poppy

[MPort]

Hi Poppy,

You are going through the roller costed that many of us experienced after being found to have PV.

As you learn more you will be able to reduce some of these problems. I get headaches when my red blood count is above a HCT of 42. Then I need a venesection. This is a headache I have learnt to recognise and I ask the hospital for a blood test and the results is usually indicate a venesection.

But I also get other headaches. And as Daisy says hydration is very important. I have to be very aware of making sure I drink enough water. I add a small amount of hydration salts once a day. If I don't take care the headaches come back quickly.

Now to your hospital appointments being too rushed. Haematology Departments often have a nurse experienced in blood issues who has the time to talk. I have found that very helpful in the early stages.

Another thing you can do to get a grip on your situation is to get a copy of your blood results. They can print out past ones in a grid. Get a copy each time you go. I have had PV for 10 years and have a spread sheet of the HCT, HGB, RBC, etc etc plus venesection amOunts. In the early days this gave me great insight into the ups and downs I was experiencing.

My PV experience calmed down after the first year as I got to grips with what was happening. I hope this will be your experience too and you ask for help here.

Good luck

Mairead

[Poppy6060 in reply to MPort]

Hi thank you so much for your helpful reply I never thought to ask for a blood report I have not seen my haematologist for over a year now because I did not wont to go on tables I am 57 this year . I have a tele phone nurse call me after blood test every 12 weeks I had ET for 6 years before and felt fine think things have court up on me then went away 3 was ago to Italy and my leg blow up on flight there they said it was a capillaries had big green lump then went all coloures this freighted me we got train home that really up set me made me think yes I have this pv.It has help just knowing people under stand feel better already best wishes poppy

[Mardi]

I also have polycythaemia Vera and am on aspirin and hydrea as I'm over 60 . I now have no symptoms as all my counts came back to normal within 3 weeks on starting 9 hydrea tablets per week and aspirin. No side effects from the Ontheamerican MPN disorders site one man controls his itching with Zantac ( it's a stomach acid drug but also stops the histamine which makes you itch) He said it may take a week or two to work . While waiting for it to work take another recommended antihistamine from the chemist.

[Poppy6060 in reply to Mardi]

Thank you for your kind reply it has helped so much you under standing best wishes poppy

[Loubprv Volunteer]

Hi Poppy, I'm Louise, I'm 62 and was diagnosed with PV 8 years ago. With the right care you'll be fine but it sounds as though you need a decent haematologist. Where do you live? You need to find a haemo who specialises in pv.

To start with don't be frightened of the meds, I've been taking hydroxicarbamide for 8 years. I feel fine. I also have venesections, not every time ( I see my haemo about every 5 weeks, he specialises in PV and is superb) but occasionally my haematocrit ( the thickness of your blood ) will rise for no reason. The nature of the beast I'm afraid.

The itch you experience - like thrush under your skin, a blow torch on the outside and a zillion insects biting you at the same time? - is called aquagenic pruritis. Doesn't affect all of us, but if it does, it can be totally debilitating, as I know. I largely knocked it on the head by listing every day what I did to antagonise it. I stopped showering bathing and swimming 5 years ago, (I have a bidet and wash my hair over the bath ) take an antihistamine ( piriton ) which doesn't work for everyone but does for me, walk briskly for an hour a day, drink 2 -3 litres water every 24 hours, no longer drink alcohol or eat sugary stuff. I stopped eating processed foods ( anything out of a tin, packet, jar etc) and eat only home made food, veg, fruit, etc.

You MUST stay hydrated and drinking lots of water ( tap is fine not sparkling) and not rubbishy stuff, will do it.

Have a look at mpnvoice.org.uk

Superb charity which we all belong too, they run forums all over the country which are brilliant. They run a buddy system for newly diagnosed patients, if you email them they will find you a nice buddy with PV for you to chat to and who will understand how you feel.

Most of all, you have to become your own specialist.

Read AS MUCH as you can about PV, become familiar with the terms, ask your specialist all the questions you have ( although he doesn't sound much cop to me!)

If you 'd like to chat meanwhile my number is 015394 45612 or my email is [e-mail].

You can feel better but you have be that silly word - proactive - and take your condition in hand. If you're not happy with your treatment, move on, you're allowed to go any where you like.

I travel an hour and a half and it's worth every minute. My local hospital just didn't come up to scratch. It's your life honeybunch, take it in hand, and you'll be fine - and you shouldn't need those painkillers any more!

Love

Louise

[Poppy6060]

Hi thank you so much for your kind reply it really helps kowning you under stand would be lovely to have a chat when is best time to call I don't know anyone with this I had ET for 6 years before it changed felt fine then think things have just court up on me hope you well today best wishes poppy

[Litefootes]

Hey Poppy. I've been diagnosed since 2004 w PV and tho I don't have phlebotomies very often any more, when its time for one I generally get a headache that last until I have one, my hands get swollen and dark red & hot, I feel like I'm walking thru waist high water. Within 2 days I generally have all those symptoms gone, thankfully. The only meds I take for PV is an 81 mg aspirin a day. As someone mentioned in an earlier post, I get a print out of my bloodwork each time, too. I keep them and compare the levels and now can see when its time for the blood draw. I don't like the phlebotomies, but for as long as I can, I will continue them if they keep my counts under control.

I'm new here, so I am truly enjoying seeing others questions & comments regarding PV. Except for at the DR. office & chemo lab, no one has ever heard of this disorder in my world. Its so nice to see I'm not alone.

Feel better soon!

[Poppy6060 in reply to Litefootes]

Hello Litefoots sorry for late reply its so kind of you to write to me it's funny you get swollen hands in Dec my blood was due to come out on the mon but the Thursday before my hand got very swollen and over the day went all black this panicked me and I went to A&E they didn't know what it was but said it could have been due to blood not getting to hand it did go down over the wk end I had to keep moving it all the time.I am now going to ask more questions I have this PV so need to know about it think before I just wonted to carry on and ignore it . It's good you are keeping well and like you until I found this site I didn't know no one with it it has helped just to know you get the hands I am not alone I take aspirin 75mg I am doing well with healthy eating well trying to thanks again for replying best wishes Poppy 6060

[Tinkerbell13]

Really wish you well, and well done for finding this most supportive site. I have ET so not as helpful as those with PV - and hope you will find things will improve very soon. Kindest regards Tinkerbell 13