How bad is the itching?

[Xuzy]

People with pv , how many years into diagnosis did you experience itching?Anyone 10 years or more into the disease and still experience it with controlled hematocrit?

[Chicagopv]

I had terrible itching until I got on Jakafi, which is expensive on Medicare. But it was uncontrolled before, even when I was taking Atarax 3-4 times/day. When it was awful, I took Emend, which is also expensive. Itching is terrible! Nothing topic works for me.

[Anouchka]

my itching started a good 2-3 ye as es beforehand and I was told it could be expression of inner turmoil not worked out from childhood 🥹. Found a cream I get sent from the Netherlands (Fagron, cooling salve) that calmed it considerably - and like chicagopv now on Jakafi it has stopped, with just an occasional flare up….

[MCW22]

I must have itched for at least 10 years before being diagnosed with PV and continued to itch for the 2 years I was on hydroxy. When I changed to ruxolitinib the itching stopped.

Carol

[Xuzy in reply to MCW22]

How do you describe your itch?I'm having weird sensations like prickly and pins needles

[MCW22 in reply to Xuzy]

Just normal itching, but of course the more you scratch the more you itch and so the cycle gets worse. I have had on rare occasions a feeling like standing on needles on the soles of my feet, particularly the heels but I think this may be a different issue although somehow connected to the pv

[john0084]

Itching since 2007 diagnosed 2019 , hemocrict controlled.

[ainslie]

the itch will probably continue until treated, I have never heard of it going away otherwise, I have heard of someone who had PV for more than 10 years with no itch and then it started, personally I have not noticed any correlation between Hct and itching, I controlled severe itching with daily UVB for about 10 years until I started on Rux

[MAP44]

Hi Xuzy

I have PV and started with monthly phlebotomy but eventually switched to Pegasys. It has been almost a year now and I still get the itch but it is so much lighter and controlled.

I take Quercetin 250 mg one-in the morning and once before bed. It gets absorbed better with some oil so I take it with a cup of herbal tea with a teaspoon of MCT oil in it. Nettle tea also helps. It is a histamine reaction for the most part in me. The over the counter drugs did not help. It was a very strong reaction about a year ago but has lighted considerably and is controlled now. I also use lotions and cream on my arms and legs where the reaction is the worst. No more showers instead a few very hot baths are now part of my weekly routine. My doctors all know of my herbal support and are okay with it. I am healthy and happy otherwise. 🙏🙂

[Meatloaf9]

I was having severe itching and actual welts on by back when in the shower during the month I was diagnosed, first thought it was ET, turns out it was really PV. We thought it was due to the detergent used for washing clothes. We changed detergent and I have not had the itching or welts since. It's been 5 years now with no itching. Best to you.

[S031251]

The Itch is a curse

Rux is a godsend

[JP1952]

Like a lot of the others my itching was stopped by Rux. I itched for 4 years before diagnosis and continued to itch another 2 on hydroxy. It was a terrible time and I'll take the fatigue, breathlessness, night sweats, weight gain rather than itching.

[Xuzy in reply to JP1952]

I was fine with just ocassional itch for about 4 years till it suddenly started to itch.

[Plavers]

I think I started itching about a year or so before Diagnosis, it increased to the point of every night scratching to the point of drawing blood. I then found a Cream ‘Ceteraben’ and a nightly pill of Cetirizine and it stopped. Thank goodness because I was convinced I’d reach the bone one day with my scratching. I’ve got ET jak2 on HydroxyCarbamide.

[Nick65]

I had itching for about 2 years prior to diagnosis with PV. Always much worse after showering.

I was on hydroxy plus occasional venesection for about 5 years and still had itching again especially after showering even with well controlled haematocrit.

Changed to Interferon about a year ago. No change with itching.

Recently read about beta alanine. Tried this and…..

No itching after showering. I’ve had 3 showers this week and not even the slightest itch. So lovely.

[PVsucks in reply to Nick65]

Hi Nick, can I ask how much Beta-Alanine you are taking? And when do you take it?

[Nick65 in reply to PVsucks]

I bought beta alanine powder from Bulk.com on Amazon. I take about 3/4 of the scoop provided with about 200ml of water about 20 before showering.

Still working a treat. The beta alanine causes very slight skin tingling sometimes. Not unpleasant like itching.