Polycythemia Vera rubra

Allergies, blood and immune system
1

hi there ive been diagnosed with pcv 2 years ago and altho i suffer from the normal side effects like fatigue vision problems and so on. however the itching is the worst i wonder if any fellow sufferer's have any ideas on how to stop it, an American woman mentioned protein powder before a bath or shower but im not sure so if any ideas please get in touch. Tony

2

Hi Tony Try the Gastro Resistant Asprin 75mg I was on this and then got told I didn't need it but the itching got really bad so I decided to go back on it which really helped it doesn't stop totally but loads better Glenn

3

Hello tony,

I stopped taking showers, which brought on the itching, and started to take baths instead. I read that if you add about a dessertspoon of baking soda to the bathwater, as it's running in, it helps.

I found that it does.

4

Beta Alanine. It has saved many sufferers from this plague (my name for it). I take it first thing in a morning and then 12 hours later. It does not not stop mine but it certainly helps. Showering is still a nightmare but mine was never restricted to water. Others claim it stops it altogether.

5

Thanks Glenn will do and let you know Tony

6

Thanks Angela unfortunately i can't stand baths due to being the oldest of ten and having to share a tin bath with my siblings lol but thanks for the advice Tony

7

Thanks john i will certainly give that a try and thanks very much for the tip Tony

8

Lucky you, being the oldest.

I was the youngest..... :)

9

unfortunately having the boilingwater poured from the kettle to warmthe bath up is a hazard i dont want to face again ha ha by the way uin the uk or the us Tony

10

UK.

In the Peak District, near Sheffield.

How about you?

11

i live at north anston now although im from Sheffield originally youlive ina lovely place which i visit loads. ive been diagnosed with the pcv for over 2 years now i hopeyou are in good health Tony

12

SITHEE!

North Anston!

North Anston's not bad either. :)

My dad, many years ago, organised the bin men's rotas for North Anston and round that way. He used to come home with some funny stories about bin men and their work. :)

I got diagnosed in spring 2016. Been on aspirin and venesections ever since. Should be on the old hydroxycarbamide but I refuse. So far, so good, But I can't wait for my next venesection. Feet are fizzing like mad!

13

Hi Angela the binmen round here are rubbish so we no who to blame now ,only kidding lol. i had to stop with venasection as my blood pressure used todrop do im taking the cancer drug. my right ankle is itching so bad i could cut it off lol . i go to rotherham for my treatment due again in 3 weeks anyway stay healthy good to chat Tony

14

I go to Chesterfield. A lovely lot.

Stay as well as you can. All the best.

15

Thanks angela same to you Tony

16

hi john thanks for the tip i take it everyday itchings a lot better and showering is a lot better many thanks tony

17

Hi Tony I have been taking Beta Alanine Powder for about four years & it gives some relief from the itching. I take 1/4 teaspoon before I have a shower. It reduces the amount of time I itch after having a shower. I also take it if something triggers of my itching during the day. It takes about 15 minutes to settle me down. I also take non drowsy antihistamine. I very rarely have the three hours of itching that I used to. If I am busy & forget to take it then I suffer.