1. < Blood Cancers & Disorders

PV Itching Not After Bathing

Posted by trillium @trillium, Mar 16, 2021

There’s so much information out there about PV itching following contact with water. My question is simple—can the PV-related itching happen at other times of the day? I consistently start itching at 7 pm every night. Interestingly, the itching last night started at 8 pm I presume because of daylight saving time change. Does anyone else experience this? Should I look elsewhere for the cause of the itching? I’d be interested to hear anyone’s stories about when they itch, not just what to do about it.

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jerrlin | @jerrlin | Sep 15, 2022
In reply to @claire39 "Cblowers1.......thank you for your most helpful input. I too have an ongoing rash under my breasts...." + (show)
@claire39

Cblowers1.......thank you for your most helpful input. I too have an ongoing rash under my breasts. It gets better with creams from the doctors but most always comes back. This started about three months ago but now I am going to look into it further. I also have a pinpoint rash on my face which I will be seeing a dermatologist for. Seems like one rash after the other, hope I find a solution soon, but I will look into your suggestion, thanks again........Claire

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I very seldom have a rash, but as my hematologist stated. When your blood thickens it signals histamines to activate and causes the itching. Anyway , Benadryl chewable and quick exercise help me. Good Luck

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christinepcv | @christinepcv | Sep 15, 2022
In reply to @jerrlin "I also was diagnosed with PCV just this May. I had the horrible itching 2 years..." + (show)
@jerrlin

I also was diagnosed with PCV just this May. I had the horrible itching 2 years before my blood ever showed signs of the disease. I went to many dermatologists and have found if I take a chewable children’s Benadryl it calms it down and usually takes the itch away. Bathing is the worst, but sometimes I find stress triggers it. I also go for a walk or exercise and that helps me. It’s a battle.

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Thank you Jerrlin
My I ask you what your ferritin and platelets numbers are?

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1 reply
jerrlin | @jerrlin | Sep 15, 2022

I don’t have any numbers for my ferritin count and the Dr never seems concerned. My platelets are 189

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iamjuneallyear | @iamjuneallyear | Sep 16, 2022
In reply to @trillium "@claire39, thank you so much for your reply. I, too, have had some sort of dermatitis..." + (show)
@trillium

@claire39, thank you so much for your reply. I, too, have had some sort of dermatitis on my scalp for about 2 years. It itches, blisters, and flakes. I’ve lost count of the different hair products I’ve cycled through to try to figure out the culprit. I never thought to correlate it to blood. This is very helpful information. What is the lotion that you use on it?

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Hello. I would suggestion getting sulfate free shampoos. Once I switched, the itching calmed down. It wasn't eliminated of course but it helped.

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fishergramma | @fishergramma | Sep 16, 2022

Oddly enough, since my numbers are good now, I only have itching where clothing seams are stitched. The worst are short sleeves. I also wear mt pajamas onside out at night.😄

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buckaroobanzai | @buckaroobanzai | Sep 17, 2022

I have polycythemia and experienced extreme itching for years, especially around my ankles. I mauled my poor ankles to death, especially at night. Triggers: warm/hot showers, exercise, hot (or even just warm) weather. But the itching happens even without those triggers. Nights are absolutely the worst.

Eventually, I broke the itch/scratch cycle:
1. I rid myself of any and all skin care products except Aveeno's special body wash and cream for dry itchy skin. No, my skin is not dry, it's just that I have found these products work for me like no other. I even use the body wash as simple hand soap. So, no acne washes, etc. No product hits my skin other than the above Aveeno products.
2. I lather myself up with the above body wash PRIOR to getting into the shower. Then, I turn the shower on and quickly rinse myself off in just-warm water. I do not linger in the shower or use hot water.
3. Whenever I start to itch, I rub the Aveeno cream into the itchy area.
4. Hypo-allergenic laundry detergent.

After a week or so, the itch/scratch cycle broke. My problem is now all but alleviated. But I am careful to NEVER scratch, knowing that I could start the cycle all over again.

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2 replies
pamelasue67 | @pamelasue67 | Sep 21, 2022

I started itching all over with hives .they first thought allergy, yrs later i was diagnosed with polycythemia versa which the itching was a symptom ..i am now on monthly shots called xolair and hydroxyzine(usually only take that just before shots are due)..my feet and hands itch and burn alot ....good luck to u i know the itching drove me nuts , definitely no hot showers for me

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kspowell | @kspowell | Sep 22, 2022

do those with Polycythemia have a red blush on the skin anywhere - like on the arms?

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1 reply
jeanadair123 | @jeanadair123 | Sep 23, 2022
In reply to @buckaroobanzai "I have polycythemia and experienced extreme itching for years, especially around my ankles. I mauled my..." + (show)
@buckaroobanzai

I have polycythemia and experienced extreme itching for years, especially around my ankles. I mauled my poor ankles to death, especially at night. Triggers: warm/hot showers, exercise, hot (or even just warm) weather. But the itching happens even without those triggers. Nights are absolutely the worst.

Eventually, I broke the itch/scratch cycle:
1. I rid myself of any and all skin care products except Aveeno's special body wash and cream for dry itchy skin. No, my skin is not dry, it's just that I have found these products work for me like no other. I even use the body wash as simple hand soap. So, no acne washes, etc. No product hits my skin other than the above Aveeno products.
2. I lather myself up with the above body wash PRIOR to getting into the shower. Then, I turn the shower on and quickly rinse myself off in just-warm water. I do not linger in the shower or use hot water.
3. Whenever I start to itch, I rub the Aveeno cream into the itchy area.
4. Hypo-allergenic laundry detergent.

After a week or so, the itch/scratch cycle broke. My problem is now all but alleviated. But I am careful to NEVER scratch, knowing that I could start the cycle all over again.

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I thank you for the info I went ahead and ordered some aveeno.
I also purchased some whoanellie.com
Laundry detergent that was recommended by a girlfriend which I love, you might want to check their website out.

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jeanadair123 | @jeanadair123 | Sep 23, 2022
In reply to @buckaroobanzai "I have polycythemia and experienced extreme itching for years, especially around my ankles. I mauled my..." + (show)
@buckaroobanzai

I have polycythemia and experienced extreme itching for years, especially around my ankles. I mauled my poor ankles to death, especially at night. Triggers: warm/hot showers, exercise, hot (or even just warm) weather. But the itching happens even without those triggers. Nights are absolutely the worst.

Eventually, I broke the itch/scratch cycle:
1. I rid myself of any and all skin care products except Aveeno's special body wash and cream for dry itchy skin. No, my skin is not dry, it's just that I have found these products work for me like no other. I even use the body wash as simple hand soap. So, no acne washes, etc. No product hits my skin other than the above Aveeno products.
2. I lather myself up with the above body wash PRIOR to getting into the shower. Then, I turn the shower on and quickly rinse myself off in just-warm water. I do not linger in the shower or use hot water.
3. Whenever I start to itch, I rub the Aveeno cream into the itchy area.
4. Hypo-allergenic laundry detergent.

After a week or so, the itch/scratch cycle broke. My problem is now all but alleviated. But I am careful to NEVER scratch, knowing that I could start the cycle all over again.

Jump to this post

Web site is whoanelli.com

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