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trillium (@trillium)

PV Itching Not After Bathing

Blood Cancers & Disorders | Last Active: Mar 19 12:59pm | Replies (9)

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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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Replies to "Good morning Trillium.......I have ET and MPN, I have been on Hydrea for three years. Before..."

@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?

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.