Greetings

[MAXimus123]

Good morning All.

I have had PV for a few years now. On the last two weeks the itching has become almost unbearable.

How do other people cope.

What suggestions do you have.

Cheers.

[Mazcd Partner MPNVoice]

Hi Maximus123, this might help

mpnvoice.org.uk/living-with...

[MAXimus123 in reply to Mazcd]

Thank you

[ggrana]

I switched to cotton washcloths and that’s helped me tremendously . I also use the Olay body wash from Costco (yellow bottle). Hardly have the problem now

[MAXimus123 in reply to ggrana]

Thank you

[Aime]

Hi, Olay body wash or Aveeno help me. Keep well hydrated and keep moisturising as many times a day as necessary. Cotton clothes and cooler showers help too. If you have to, rub gently, don’t scratch as you can then get infections.

Hope you’re less itchy soon.

Kindest regards Aime xx😻😻

[MAXimus123 in reply to Aime]

Thank you

[JediReject]

When things normalise a little and you can attend clinic , given you've had PV for a few years and given the severity of your itching it might be worth asking if you could go on Ruxolitinib. It was the only thing that stopped my itching and other symptoms almost immediately after years of suffering when I had MF.

I was able to bathe and shower itch free , , I'd forgotten how to enjoy a good soak.

Good Luck - Chris

[MAXimus123 in reply to JediReject]

Thank you. Will follow your advice.

[hunter5582]

My itching comes from eczema rather than pruritis. Don't know your source of the dreaded itch, but the following helps me:

1. Avoid all perfumed/dyed laundry detergents and fabric softeners.

2. Avoid all perfumed body soaps and shampoos.

3. Do use ceramide based cleansers. (I use CereVe)

4. Use a ceramide based crams to maintain a healthy moisture barrier. (CeraVe again).

5. For outbreaks - apply Eucrisa. (Prescription med - PDE4 inhibitor) My dermatologist confirms Eucrisa would work for both eczema and pruritis. This med really works for me.

I am sure you have already seen the "no hot showers" advice to avoid aquagenic pruritis. You may have to do some observation to see what triggers you have. I believe there is some indication for Ruxolitinib as working better for itching than the other meds. You can check with your doc about that.

Hope you find some solutions soon.

[MAXimus123 in reply to hunter5582]

Thanks for the reply. Will try the creams and your advice

[S031251]

I didn’t cope until I was put on Ruxolitinib - totally agree with JedRejects post.

Hope you get relief soon

Best wishes

Anna

[MAXimus123 in reply to S031251]

Thanks

[Kimmyk]

Your itching may also be inflammation from allergies . I had noticed when I ate certain foods it would be unbearable. Try an anti-inflammatory diet. See it it helps.since having pv it has made me more sensitive. Good luck.

[MAXimus123 in reply to Kimmyk]

Thanks

[JP1952]

You have my sympathy with your itching. It has plagued me for years. My ET was only discovered following blood tests by the dermatologist. The only relief was given to me by phototherapy which began working almost immediately, lasted for the duration of the sessions, 3 months, and for 2 months after. Unfortunately, it is now coming back.

My haemo consultant said the itching had nothing to do with ET because I was itching before my blood levels went haywire.

Personally, I think it is. I have never been ill in my life before, fit and healthy and then aged 65 I cannot stop itching, dermatologists can find nothing wrong, no creams or anti-histamines give relief, and then diagnosed with a blood cancer. Coincidence?

Anyway, apart from sympathy, itching is hell, the only thing that has helped me to date is phototherapy. I'm going to read your other replies and try everything.

Good luck.

[Pte82]

MAX consider several approaches. First you may have become a celiac. exclude wheat products in your diet. Second, use a quality probiotic and include fermented foods in your diet to buildup the good bacteria, many skin conditions are a reflecting an imbalance in the gut. Research liposomal vitamin C, liposomal curcumin and Astaxathin. They are signaling pathway inhibitors.

[EleanorPV]

Hi, firstly remember we are all different. Also ask your haematologist before you try any medication. My itch (6 years) isn’t linked to how high my HCT is but is part of PV. I loose the ability to think with my itch. What has helped for me; very hot baths (careful not too hot); sauna; hot air temperature when drying; phototherapy; loose fitting clothes; beta alanine (advice came from a Pruritus FB group); Interferon;antihistamines; hydration; moisturiser. None of this works every time. Good luck I have travelled the path you are on.