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Hello from Los Angeles. I've been dealing with Cal R mutation ET since 2020
I'll add: If it's a small itchy spot, it helps me to put on anti-itch cream or cortisone cream and cover the spot with a… read more
Thank you Janice. I’ve tried steroid creams (3 different ones.) I’m bathing with Cetaphil soap and using CereVe anti- itch crème. It was almost gone and then comes back. I’ll try the Aveeno products.
I have PV JAK 2 positive. My numbers have not gotten too high. I get pins and needles itching and and I’m tired. At work I have issues with instant recall of new laws and procedures.
Thank you Tta, this list of symptoms really helps.
My skin is itchy after a shower but now I am having episodes through the day for no reason. Does anyone know a solution I am going crazy
A pinch or 2 of Beta Alanine in my coffee or tea or any kind of liquid in the morning everyday. Too much of it and it also causes a kind of a tingling itch. Over time, you can add a little bit more… read more
Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more
Dead Janice,
Type A personality that you describe (energetic, high-functioning people) is a myth that does not hold up in scientific research. It was a myth used in the past to blame illness on the… read more
That's at least two of us who find that a very hot shower provides relief. My itching comes and goes for no apparent reasons. Presently, scalp itching and pain are getting the focus. My dermatologist… read more
Any advice greatly appreciated. I currently have high platelets, red cell count low and white cells high. With this i have severe itching all over from being warm, to the point I could rip my skin off. Red rash around the neck and chest that becomes worse when I get warm. Hema/onc sent me for Bmb as he said I have all the symptoms of jak2 mutation, Bmb came back OK, anyone else in this situation that just has to get on with it as the cause is unknown so no medication can be given to lower… read more
Hi Suzanne, thank you. The consultant said he would refer me to a dermatologist to help with the itching skin. Not sure how clued up he is with this as he said it's a waiting game to see what… read more
Every day. It's so severe that I had to get on prescription pain medication. It took years of fighting to get it. I despise opiates, but the pain was taking over all of my thoughts. I could not focus… read more
I started monthly phlebotomy for polycythemia just last spring. My physician initially prescribed sessions when my hematocrit is > 52. I argued against such a high hematocrit requirement. So, last month she dropped it to 45%, meaning I can have them whenever my hematocrit is > 45%.
What are your hematocrit boundaries for phlebotomy? Any advice?
mine goes up so fast, so I have 3 a month to keep it at 43-44, when it goes up I am miserable! the prickly heat is it!! wow!
I itch all over my body
Take as cool of a shower as u can stand I found this helps
