Thank you for your support. At that stage I just wanted to go to sleep and not ever wake up.
In Perth WA 8 years ago, my haematologist at the Cancer Clinic said she had “hundreds” of patients with post PV fibrosis. This was NOT true. The Hospital Pharmacy had never even heard of Myelofibrosis…. and did not have Jakavi in stock. The nurses and some doctors in hospital think I am making it up. I have no management team.
I am so appreciative of the Mayo Clinic, who over the last few years have given me the information and support I need. I am so grateful. 🙋🏼‍♀️💕 Marianne 2

When I had Polycythemia and was taking Hydroxyurea… I had that awful itch all over my body 24 hours a day… like insects crawling everywhere under my skin. A pharmacist made a huge jar of Aqueous Cream with Menthol, which I used liberally at least twice a day. It brought “some” relief in winter, but none in summer.
The Hydroxyurea was the culprit..for me. it caused so many problems I just stopped taking it.
I had asked the haematologist for Ruxolitnib many times and was refused it… and I refused to keep taking Hydroxyurea. Outcome? She gave me scripts for jakavi… and within a couple of months I felt so much better… that was several years ago. No more itch, less nausea and less depression. Just wondering if your body is not coping the meds you currently take?
Marianne2

I have tried every cream available, little relief, then I remembered capacin [stuff in hot sauce] initially activates and then desensitizes or depletes neurotransmitters. At first there is an intense "burning" sensation, which subsides. Capacin provides long-lasting itch relief. Regular use kills the tiny nerve endings, but they regenerate after disuse.

The big itchy spot in my back as ceased to be annoying. I am not bothered during the day. I treat once-a-day with Alabama Sunshine Hot Sauce. I tried the "ghost" concoction, but that just about sent me to the shower.

Capcin upside is itch abtement. Hot sauce is not for the faint of heart. But, when at whit's end, consider the outlier.

Another topical is jewel weed. The sap is used to calm poison ivy itch and insect bites. Works on any itch.

Dr. Bob
a PhD, not an MD