The itch and polycythamia vera

[Grumpy54]

I read somewhere that itching and polycythamia Vera has a better prognosis. Does any of you helpful members know if this is true.

[Paul123456]

It was from a slide I screen saved re a Presentation about PV prognosis. Sorry, can’t remember the speaker/Conference

Stated

“Pruritus considered a favourable indicator - mechanism unexplained/unproven”

[Innessant]

Interesting subject. This is the one syndrome that I get. Commences after 10 minutes post shower. Ironically if I have a 30 minute warm Jacuzzi no itching… If this is the only symptom and I am happy.

[Loubprv Volunteer]

Hi,

The “itch” is known as aquagenic pruritis for obvious reasons!

I was affected big time and learnt every possible swear word I never knew until I simply decided to avoid everything that instigated it.

Mostly water based so I haven’t had a shower, bath, or swum for 9 years.

Miss swimming but not shower or bath. Yikes I hear you say, how do you manage. I wash my hair over the bath, face feet and derrière not affected fortunately and touch wood, we have a bidet so all is well. I’m assured that I don’t pong and if I did I’d choose to hum over itch ( as we all know it’s like having thrush under your skin a blow torch on top and a zillion insects biting at the same time so a hell of a lot more than an itch)

I also avoid tights and guzzle Piriton.

Anyway, my haemo tells me that Ruxolitinib apparently stops pruritis in some cases......maybe more news in a forum?

I take Hydroxicarbamide and prefer to stick with it because at the moment ( touch wood again) it suits me.

You could try searching on patient power?

Louise

[Blood123 in reply to Loubprv]

Well, Louise, only my shins itch like crazy in the bath, i use a back brush to cure the itch when I'm in the water, then lotion after I dry. I've noticed that knee socks that come up my leg can set the itch off! I take 500mg Hydroxiyuria and so far it works to keep me in reasonable range for my blood readings.....sometimes 2 or 3 phylebotomies to get the counts down. I've had PV for 7 years, and I'm 70. So far so good!

[Inca in reply to Loubprv]

Strange but true, I do not have itching when I use our salt water pool,I was scared for ages,then last summer during the intense heat I took the plunge....maybe just lucky for me,sure you have tried everything.Have also found soap less shower gel is less likely to cause itch....but I can suddenly start without water ,when over tired or stressed( often) Really is a horrible thing to deal with.Best to you and new family! Sally

[JackLina]

Avoid oranges and generally take a look at your diet to see other fruits that can aggravate this. I have never looked back since realising the orange juice I have every morning was the culprit. Also if I overeat strawberries or raspberries, same.

Piriton is a little overkill. 4 mg. Chlorphenamine does the trick just before a bath. Works every time for me but you may find you don't need it if you keep up with the right diet. ATB

[Norman45]

When first diagnosed with ET (on Hydroxy and then Anagrelide) I had red raw shins and legs especially after showers. Haemo prescribed Ranitidine (Zantac to you and me) an antacid which took away the itches.

Now on Ruxolitinib for MF and haemos prescribed Aciclovir, an anti viral to stop the herpes/shingles but it also seems to work on the prurititis and I’ve had no itches for years.

Hope this helps keep you up to scratch!

[Loubprv Volunteer]

Hi everyone. Believe me I’ve tried the lot. Unfortunately a massive dose for 9 months of Nitrofurantoin reacted with something, poss Hydroxicarbamide, and caused something called MCAS ( do google it and look at histaminintoleranz.ch if you’re bored) and my immune system is compromised! Rather the pits.

I’m limited to about 20 foods and can’t tolerate any creams on my body so I’m a bit stymied.

However Sally, I think you might be right, we were sailing last year in the Med and an enormous wave swamped me. I kept my clothes on and didn’t itch! So maybe sea swimming is the way forward.

Thanks everyone for your replies and support.

xx

[meaboutthis]

I have read some articles that do say that exact thing. People with PV-caused pruritis have are less likely to progress or transform. Good on you!!!