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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Itching can happen at any time of the day or night, water or no water. Personally, I find my ankles itch horribly starting around 7-8 PM. This itching drives me nuts all night long. I used to wake up in the mornings with my ankles all scratched up and red with blood...which is why I now have my anti-itch protocol that I wrote about elsewhere.

I THINK my itching gets much worse in the early evening from excess red blood cells pooling in my ankles/feet after me walking and then sitting all day long. The excess blood causes a histamine reaction which causes itching. I scratch (big mistake) and then the histamine reaction gets worse and I REALLY start itching terribly. This is the itch/scratch cycle.

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Profile picture for veryoldman @veryoldman

Just yesterday, I read somewhere on this site about using Aveeno lotion to sooth itching. I'm ET, CALR, five + years on HU, and in the process of switching to Anagrelide due to a hard-to-cure ankle ulcer. One week into the process, I developed a terrible itch where you don't want to have such. Five minutes after I smeared Aveeno all over the location, the itching STOPPED!! And has not come back. My mission when I ran across your post was to see if I could find the original post so I could thank him/her for posting.

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@veryoldman, I appreciate your posting about the relief you found. I number of members have had success with Aveeno anti-itch cream. I believe it may have been @buckaroobanzai's post that tip you off here: https://connect.mayoclinic.org/comment/750783/

How are you doing today?

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Profile picture for christinepcv @christinepcv

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

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Just yesterday, I read somewhere on this site about using Aveeno lotion to sooth itching. I'm ET, CALR, five + years on HU, and in the process of switching to Anagrelide due to a hard-to-cure ankle ulcer. One week into the process, I developed a terrible itch where you don't want to have such. Five minutes after I smeared Aveeno all over the location, the itching STOPPED!! And has not come back. My mission when I ran across your post was to see if I could find the original post so I could thank him/her for posting.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@claire39, do you mind sharing the lotion that you mention in your previous post that helps when you have an outbreak? Susan would like to know.

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Good morning Colleen. The name of the lotion is Taro-monetasone Lotion. You can not buy it over the counter so ask your doctor for it. It really helps with the itching.

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Profile picture for susanflower @susanflower

What lotion do you use?

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@claire39, do you mind sharing the lotion that you mention in your previous post that helps when you have an outbreak? Susan would like to know.

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Profile picture for claire39 @claire39

Good morning Trillium.......I have ET and MPN, I have been on Hydrea for three years. Before diagnosis I developed itchiness on my scalp with outbreaks of blister like spots. Dermatologists said it was an allergy to fragrance. After I started to take Hydrea it slowly calmed down to just a bit of itchiness sometimes at night. My Blood Doctor said it was side effects of the cancer. I have a lotion that I put on it if I have an outbreak. I do not have itchiness anywhere else. Hope this information is helpful

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What lotion do you use?

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Profile picture for buckaroobanzai @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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Web site is whoanelli.com

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Profile picture for buckaroobanzai @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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do those with Polycythemia have a red blush on the skin anywhere - like on the arms?

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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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