Itching

[ERei]

Does anyone have itching that is NOT on the palms of their hands or soles of their feet? Lately I've had it on my chest & my neck. My hematologist says it is not from my PV because if it were from PV it would be on my hands & feet and also that my #s are not high enough right now.

[C2Cnext]

I most commonly get itching on my arms and thighs and sometimes on my neck/décolletage. I think current thinking is that it related to mast cells and I am not sure why your hematologist thinks mast cells would only be in one bit of your body??

[Cat1001954]

hi I get terrible I Ching on my legs and sometimes my arms but mainly legs

[LittleLuna]

i get hands, feet, legs, arms itch. My numbers are also low and per my MPN Specialist numbers do not determine the symptom burden levels we experience.

I would suggest your haematologist does some research on patient experiences of symptoms.

It can be so so annoying. Some people here will advice on good tips to help. I am not too bad so not had to resort to anti histamines or any other meds yet.

Water does tend to be an aggravater for a lot of people on here.

Hope u feel better and get some relief.

[ERei in reply to LittleLuna]

Thank you. This is actually my 3rd hematologist! I also see an MPN specialist who is far away every 3 months.

[john0084]

The itch is a well documented symptom of pv, blurry vision is another, the only relief I've discovered after itching for years is beta-alaine a sports supplement, it's not perfect but a small teaspoon before showering helps.

[ainslie]

ive been a Olympic PV itcher for many years prior to Rux, I have never had it on hands or feet, counts didn’t make any difference , your Haem has room for improvement

[S031251]

I agree entirely with ainslie and littleluna.

I hope you find something to help although only Rux helped me and now I’m free or it

Anna

[RazB]

hi, I have ET. I itch everywhere! I’m always aware that I’m like a child who finds it hard to sit still and forgets and itches constantly! X

[Anouchka]

I have itching on insides of my heels or calves. I relate it to my PV but never thought of clarifying it with my haem cos the itching started before diagnosis and was told then it was related. Now it’s sporadic and my numbers are “stable”….

[JP1952]

I also agree with Ainslie and little Luna.I itched all over my body except for palms of my hands, soles of my feet, and my scalp.

Only Rux stopped it completely but anti histamines and oil based soap/moisturizer helped a little.

Good luck. Itching is horrible.

[Threelions]

Calfs & thighs for me. So far no itching on feet or palms of hands.

[Hopetohelp]

I get the itching after the bath. For many years it was front of neck and arms. It seemed to be where I caught the sun. Then it spread to my back but that thank goodness that has disappeared.

[STK52]

I get itch or skin tightness when my body gets rubbed or after shower. But not in my hands or feet!!!

[DEGate]

My wife suggested I try Solgar Stinging Nettle Leaf extract tablets which she uses for prickly heat and they have certainly helped my itching.

Showering is definitely an issue; I tried much cooler showers but that didn't help. I have been taking anti-histamine which seemed to help for a while but I've stopped recently and it doesn't seem to make any difference. I will look into Beta-alanine as suggested by John0084.

[hunter5582]

You have already heard from others that MPN-related itching and pruritis are not confined to hands and feet. While some people report a reduction in itching with cytoreduction, it is not related to the numbers of RBCs. RBCs have nothing to do with itching.

Suggest that you consult with a MPN Specialist for accurate information about MPNs. Here are two lists.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

[NY45]

I think I have found itching to be a side effect of my immunotherapy and some moisturizers with anti-itch ingredients have helped.

[ERei in reply to NY45]

Which moisturizers have you tried?

[Murdoch01]

Hi ERei the only thing that really helps me is an ice pack I don’t get in on my hands and feet, mostly on my arms and getting hot makes it worse. I hope you find something that helps you.

[AndyKay]

Yes, the tops and bottoms of my feet itch; sometimes my ankles do to.

[Itch]

Hi, as with others, I haven’t experienced itching on hands & feet, but had unbearable itching, burning stabbing in upper arms until prescribed Fexofenadine ( anti histamine) . I now take 120mg twice daily & now which has eased it completely. Good luck 🤞

[Maurabawn]

Hi! Hopefully you are reassured from the above replies that itching goes with the disease! One of my symptoms before being diagnosed with ET, MPL driver, was intense itching on the top of my head and the base of my spine! Thankfully, Hydroxycarbamide has reduced this significantly. Hope you find relief soon.

[K-itty]

Before I was diagnosed with ET in 2015 and eventually with PV, my neck would constantly itch. It continues to do. I always thought it was from the PV, however my hematocrit #s have been low, so I suspect it's the ETand elevated platelets. I recently started on Jakafi, and both inflammation and itching have subsided.

[finlay2106]

Just come across your post. As per the others I've never had itching on palms or soles. Mostly back and forearms and sometimes front of thighs and it comes and goes. My haematologist confirmed it's mast cells de-granulating that causes it but said they don't know why it actually happens. Yes it's made worse with showering or rubbing and I try to have a cold or tepid shower (on gentle setting) which still can cause itching but it wears off pretty quickly. I never use moisturiser as skin is not dry and don't see the point. If really bad especially at night then I take paracetamol and cetirizine hydrochloride (anti-histamine) which calms things down. I have PV, take hydroxycarbamide 1gm daily and 75mg aspirin. Blood count variations don't appear to have any impact on where and when I itch.

I think your haematologist needs to do some research/education!

[MAP44]

hi ERei,

Not true! I have PV and I am itchy mostly on my arms and legs and occasionally on the trunk but never on my hands and feet.

[Pte82]

Hey ERei, vitamin C is an antihistamine. My wife found relief from itching when on Hydroxy by using a liposomal whole vitamine C complex supplement. Ascorbic acid is only a part of the whole vitamin C complex and liposomal delivery offers several advantages one being it lasts longer. Check it all out and consult with your health care professional before using any supplement.