PV Itching Not After Bathing

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.

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.😄

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

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

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

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

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.

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

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/

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.