PV Itching Not After Bathing

ME!! It’s the itching that drives me insane! I’ve tried, Sarna, it seems to help! I also have s friend who is trained in Chinese medicine who makes a purple sauve (olive oil, candula, tea tree oil, etc! That also really moisturizes! I try to take lukewarm baths with sea salt, no more than every other day! Use lotions to keep skin moisturized! Refuse oral medication as I’m not a fan of big pharma! I have lost over 50 lbs with no know cause and still losing after 2.5 years. Also pain across mid back that really is persistent and only take Tylenol. Biopsies thru dermatology says no to skin lupus, gave colbetesol ointment that seemed to resolve the awful rash. Im supposed to see a hematologist every three months but first available not till November 2023? Western medicine has failed after 2.5 years to help and dismissed me as irrational! Any help or support welcome! My greatest fear is stroke and losing my independence and I need right hip replacement surgery before end of year for avascular necrosis ongoing 5 years, so painful it keeps me from sleeping over 4 hours! Please help! Best of luck!

Yes, my itching usually starts in the am not everyday but often. Normally it’s my legs. I use children’s chewable Benadryl. I tried Walmart brand but that really makes me tired. It’s a trial and error for everyone. Sometimes I run around the house rubbing my legs until the Benadryl takes effect. I am lucky so far, as itching and a bit of fatigue at times are my only side effects.

I have neuropathy from head to toe and no one can determine the cause. Also have light chain kappa protein in my blood that has been increasing every 3 months It is 25 now which my hemotologist says is low, but will continue to watch. Now, I have itching in my back every night when I get in the bed to watch TV. It is so bad. Tried benadryl but does not help. Sometimes it is so bad. I have scratches on my back where I scratched so hard with my plastic LONG SHOE HORN, nothing else seem to help the itch.

in reply to @jerrlin It doesn't matter what time of the day, I itch. It has especially been difficult because of the heat. Nothing works for me, and I hate the cortisone spray. I try to tell myself that I am only going to scratch this area for a few minutes and then stop. Whatever works.

I had terrible thorax itching. Xanax stops it fast!!! And my itching was more than likely a precursor to my Myelofibrosis. .5 my Xanax (Alprazolam) does the job.

Could it be related to anything you might be eating which could be interacting with your meds and thus result in the itching?
Eg one of the side effects of Jakafi is UTIs. I do not have that per se but when I need to urinate I get the sensation as if I’m starting one - so we did blood test to find out about food intolerances which then showed me to be gluten and lactose intolerant!!! 😣 (I knew about the latter, the former came as in unpleasant shock).

Hi I have suffered with itching now for a number of years caused by my CLL.
I have found the easiest and best way to deal with it was by taking an antihistamine called Cetrine. I use to take these daily but now I manage with just one tablet every four days or so. Night time is generally the worst but as soon as I feel the itch starting to come back I immediately take a Cetrine to keep it under control.

Initially, I took antihistamines. Then I tried Xanax which seemed to work better. But, my itching phase passed and I pray it stays passed.

Hello, I have PV as well. Sometimes it feels like a spider crawling on my skin at all hours if the day that causes me to itch. As for the itchiness when I take a shower, I would call it more like electricity following an itch. When I do the dishes in hot water , I feel that electricity as well as sweat pouring out of my body everywhere. I have tried them taking blood out of me and found no relief. Taking baby aspirin 80mg every day helps.

What about the sweating? Anyone with PV go through that sweating? Sometimes I have to change my clothes it gets so bad. I see my hands just start watering up. I have quit smoking cigarettes and it has been 6 months since I had my last one. Please 🙏 help