PV Itching Not After Bathing

Posted by trillium @trillium, Mar 16 10:32am

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.

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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Good evening @trillium. I just follow itching because I have now been suffering from the "itch" for about a year. You can find up-to-date posts when you go to the group Skin Health. https://connect.mayoclinic.org/group/skin-conditions/. I have started a few discussions in that group that may be helpful.

Be safe and protected.
Chris

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@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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@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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@artscaping

Good evening @trillium. I just follow itching because I have now been suffering from the "itch" for about a year. You can find up-to-date posts when you go to the group Skin Health. https://connect.mayoclinic.org/group/skin-conditions/. I have started a few discussions in that group that may be helpful.

Be safe and protected.
Chris

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Thank you, Chris! I’ll definitely check out the posts on skins conditions.

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@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?

Jump to this post

Good morning @trillium, @claire39. I just realized that I might have a solution for your scalp itch. My dermatologist diagnosed my 10 year battle with scalp itch as seborrheic dermatitis. It started behind my ears and was very yucky and annoying. She has develop a 3 day treatment program that combines shampoo changes with overnight application of fluocinonide twice a week. I did the process 2 times and that was 2 years ago. It is not 100% gone…vanished…….but it is close to at least 95%. I only use the topical every once in a while behind my right ear. That is also my main tinnitus ear.

I wish I could give you a gift of this treatment….it was my first “itch” relief introduction. Wish my hands responded to something or anything to help with the rest of my body.

May you have happiness and the causes of happiness.
Chris

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@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?

Jump to this post

Hello Trillium…..thank you for responding….your symptoms are exactly the same as mine. My doctor recommended a lotion called Taro-Mometasone and you need a prescription for it, she also told me to take an allergy pill when I need to and it also helps. I will check out Chris Trout's post as well. Hope this helps

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@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

Jump to this post

Have you ever had the lesions on your scalp biopsies? I had a very itchy rash in the area under my breasts that would flare and subside for 3-4 years and was treated for bacterial infection and for fungal infection when I had my annual dermatology exam at Mayo Clinic. In 2016, I had a punch biopsy of similar rash in my groin area and was diagnosed with a rare disease, Langerhans cell histiocytosis. It is a blood disease that is primarily a pediatric disease, but can affect one at any age. It causes most frequently causes skin lesions and/or lesions on bones. It can also appear in lungs,spleen, liver, or on pituitary gland. It can only be diagnosed by biopsy of lesions and requires special staining by pathologist to identify. It is seen so rarely that most doctors never see an adult with it and never think to check for it. I was treated with many topicals, including strong steroidal ointments, Valchlor gel and even brachytherapy. All irritated my skin and only when I started on Hydrea in late 2019 did it get better. It took several months to end the sometimes ulcerative rash. the raw skin with weeping. I now have some areas of small red bumps that occasionally itch, especially at night, but has been like a miracle. I also was diagnosed in 2019 with chronic myelomonocytic leukemia. There may or may not be a connection, such both are myeloid diseases.
I realize that this would be a long shot, but I feel that LCH is under diagnosed and most adults are not diagnosed for months or even years after lesions first appear.

REPLY
@artscaping

Good morning @trillium, @claire39. I just realized that I might have a solution for your scalp itch. My dermatologist diagnosed my 10 year battle with scalp itch as seborrheic dermatitis. It started behind my ears and was very yucky and annoying. She has develop a 3 day treatment program that combines shampoo changes with overnight application of fluocinonide twice a week. I did the process 2 times and that was 2 years ago. It is not 100% gone…vanished…….but it is close to at least 95%. I only use the topical every once in a while behind my right ear. That is also my main tinnitus ear.

I wish I could give you a gift of this treatment….it was my first “itch” relief introduction. Wish my hands responded to something or anything to help with the rest of my body.

May you have happiness and the causes of happiness.
Chris

Jump to this post

Chris, this article mentions b6, biotin and zinc deficiencies as a possible cause of seborrheic dermatitis. The other discusses gut health and probiotics. Many medications and treatments impact gut flora.
https://www.podiatrytoday.com/when-vitamin-and-nutritional-deficiencies-cause-skin-and-nail-changes
https://sebdermhealing.com/probiotics-promise-a-cure-for-seborrheic-dermatitis/

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@cblowers1

Have you ever had the lesions on your scalp biopsies? I had a very itchy rash in the area under my breasts that would flare and subside for 3-4 years and was treated for bacterial infection and for fungal infection when I had my annual dermatology exam at Mayo Clinic. In 2016, I had a punch biopsy of similar rash in my groin area and was diagnosed with a rare disease, Langerhans cell histiocytosis. It is a blood disease that is primarily a pediatric disease, but can affect one at any age. It causes most frequently causes skin lesions and/or lesions on bones. It can also appear in lungs,spleen, liver, or on pituitary gland. It can only be diagnosed by biopsy of lesions and requires special staining by pathologist to identify. It is seen so rarely that most doctors never see an adult with it and never think to check for it. I was treated with many topicals, including strong steroidal ointments, Valchlor gel and even brachytherapy. All irritated my skin and only when I started on Hydrea in late 2019 did it get better. It took several months to end the sometimes ulcerative rash. the raw skin with weeping. I now have some areas of small red bumps that occasionally itch, especially at night, but has been like a miracle. I also was diagnosed in 2019 with chronic myelomonocytic leukemia. There may or may not be a connection, such both are myeloid diseases.
I realize that this would be a long shot, but I feel that LCH is under diagnosed and most adults are not diagnosed for months or even years after lesions first appear.

Jump to this post

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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