New to PV

[noodles26]

Hello! I have been recently diagnosed with PV and have been on Interferon for a week now but I am experiencing really achey legs, it literally feels like my bone could snap! Did anyone else experience this? I am hoping it goes soon! I am having to go to hospital for regular venesections and my blood count is slowly increasing rather than decreasing! The Haemotologists say this is quite common in young people with PV, has anyone else had this?

Thanks for any help

N xx

[Hidden]

Hi Noodles

My husband was diagnosed with PV about 2 years ago and was taking Hydrea medication. He didn't have aching legs, but had leg cramps and lots of itching, especially on the tops of his legs. He was having to give a lot of blood every fortnight because his blood was too thick. His PV has now mutated into Myelofibrosis, which now means he has had to change his medication, which is Ruxolitinib. This comes from America for us here in Australia, as it is not approved here by the medical profession. He was going well for 12 months, but has now started getting very tired again, and more leg cramps. His specialist is considering giving him blood now! Will find out in a couple of weeks.

Shoosh

[sand-bog in reply to Hidden]

Hi Shoosh, I see you are in Australia, whereabouts - I am in NSW. Do you know if they have any forums here like they do in the UK

[Hidden in reply to sand-bog]

Hi Sand-bog

We live in a small town on the southcoast of W.A. It is called Denmark. I am not sure about the forums, as I have only just discovered this one. If I stumble across something else I will be sure to let you know.

Regards

[sand-bog]

Hi Noodles26, I was diagnosed with PCV about 7 months ago, not having venesections but just on Hydrea and aspirin. I sometimes get achey legs and arms - to me it almost feels like my blood is rushing around!

[Malaika]

Hi Noodles. I have been on Interferon now for a few months. The side effects have nearly all gone and I feel sure yours will do just give it some time. On a positive side I am now achieving the best counts I have ever had so worth the perseverance in my book. Good luck and hope you feel better very soon.

[LouisePRV Volunteer]

Hi Noodles

Welcome to our friendly gang! A long email. Bear with me. Hope it helps.

First of all don't panic or be frightened.

There are lots of us out here with PV, all toddling along quite well, and the prognosis is good. Huge amounts of research going on into myeloproliferative neoplasms in general.

I was diagnosed with PV in 2009, very high haematocrit ( 68 ) and given regular venesections every two weeks, as well as hydroxicarbamide and aspirin.

Obviously I'm not a medic and don't know your results, I also haven't taken interferon.

You don't say where you are as far as hospitals and haematologists are concerned.

I'm afraid bone pain can be a problem with PV, along with other symptoms. I found that these were a lot worse in the first 12 months whilst treatment started and got to work!

There are some actions you can take to self help if you like:

Remember SHRED

Support - earmark a nucleus of supportive friends and family to whom you can confide, don't bottle anything up. Cut out stress

Hydration - Drink LOTS of water - about 3 litres every 24 hours. Not difficult, just get a half litre glass and keep it filled! It really does help massively.

Rest - get plenty of rest as well as:

Exercise - try and have plenty, you may already if you're young , but I try and walk or cycle for at least an hour and a half a day. Keeps the old circulation going.

Diet -

Cut down on refined sugar and alcohol.

Eat a healthy diet if you don't already, and try to cut out processed foods, supermarket chicken and farmed fish - in fact everything you can containing chemicals and additives and preservatives. This may sound impossible, but do try. Give your body the best chance you can, after all you're packing in more chemicals in the form of drugs, so it makes sense to cut out as many as you can in the form of food additives.

Great websites to look at

Mpdvoice.org.uk

Patient power.org - I think ! Google patient power anyway

The Penny Brohn cancer care centre in Bristol. Google it - can't remember the website sorry, but sooooo worth reading.

I know I might sound like some sort of organic food crank, but I had so little advice when I was diagnosed I took to being my own project manager and I feel great!

Ask questions of your haematologist, get him to explain what your readings mean.

If you're not happy, find another haematologist.

I'm just in the process of moving to the Christie in Manchester because I'm not happy with my care here in Cumbria. ( 5 different locum haematologists in 10 months - none of whom know me nor I them, and all of whom had different ideas re treatment, and tended to treat me like a half wit.......

You'll be fine, hope you feel better soon.

Louise

x

[steve_m]

Hi noodles good to see you on this site I believe it was recommended. I found more relevant info on here than with the haematologist. All they want is to control the count they don't seem to care about the symptoms.

[noodles26]

wow thankyou for all the information I am having venesections 3 times a week at the moment, hopefully this will gradually decrease in time! I have been drinking lots of water and eating a balanced diet with as much fresh produce as possible! I had a lot of water weight on me as my liver wasn't functioning due to the blood clot and that is now coming off and I am feeling quite boney! I'm so glad my friend told me about this website!!!xx