PV Itching Not After Bathing

What lotion do you use?

@claire39, do you mind sharing the lotion that you mention in your previous post that helps when you have an outbreak? Susan would like to know.

Good morning Colleen. The name of the lotion is Taro-monetasone Lotion. You can not buy it over the counter so ask your doctor for it. It really helps with the itching.

Just yesterday, I read somewhere on this site about using Aveeno lotion to sooth itching. I'm ET, CALR, five + years on HU, and in the process of switching to Anagrelide due to a hard-to-cure ankle ulcer. One week into the process, I developed a terrible itch where you don't want to have such. Five minutes after I smeared Aveeno all over the location, the itching STOPPED!! And has not come back. My mission when I ran across your post was to see if I could find the original post so I could thank him/her for posting.

@veryoldman, I appreciate your posting about the relief you found. I number of members have had success with Aveeno anti-itch cream. I believe it may have been @buckaroobanzai's post that tip you off here: https://connect.mayoclinic.org/comment/750783/

How are you doing today?

Itching can happen at any time of the day or night, water or no water. Personally, I find my ankles itch horribly starting around 7-8 PM. This itching drives me nuts all night long. I used to wake up in the mornings with my ankles all scratched up and red with blood...which is why I now have my anti-itch protocol that I wrote about elsewhere.

I THINK my itching gets much worse in the early evening from excess red blood cells pooling in my ankles/feet after me walking and then sitting all day long. The excess blood causes a histamine reaction which causes itching. I scratch (big mistake) and then the histamine reaction gets worse and I REALLY start itching terribly. This is the itch/scratch cycle.

A red blush could be anywhere. It's hard for our sludgy blood to move through small capillaries, so it sometimes pools in one place or another => a sort of blush. I experience it on my cheeks and ankles.

I find my legs itch the most unless I take a shower or bath, then it’s random. It’s miserable and makes me crabby. My regiment is chewable Benadryl and ibuprofen before a shower . I only wish I could really control this. I’m very active and drink tons of water, don’t know what else to do without taking a chemo drug and not sure if that doesn’t help one symptom and cause another problem.

Doing very well, thanks for asking, and the info. If I had to guess, itching ranks a close second to fatigue as a nasty side effect of many of the MPN medications. I had never been bothered with it until I began to switch medications, but then I quickly made up for lost time. I think Aveeno should be stamped on the forehead of every Hematologist in the world.

What about phlebotomy?