Can anything be done about hot, red flaming cheeks? I look like I've been scorched. Usually the red cheeks come and go, but they've been this way for two days now. It isn't just how they look, but also how they feel. My face is hot to the touch.
Thanks in advance.
Oh, I have PV JAK2+. Right now I'm just on a baby aspirin.
It may be that you are experiencing erythromelalgia, which can affect the face. Hopefully some of the others on the forum who have experienced this with their MPN can weigh in on what they experienced and what helped them. There are references to aspirin helping. Strongly suggest reviewing the symptom with a MPN Specialist as many docs will not be familiar with this manifestation of PV.
Please let us know what you find out as we can all learn from what you learn.
Hi Hunter. I think you may be correct. It certainly sounds this is the problem. I am scheduling a telemedicine visit with a dermatologist. There is actually a new prescription that treats erythromelagia. I'm going to see if I'm a candidate to give it a try. It is called Miravso.
Had to look Mirvaso up. online.epocrates.com/drugs/... .
It certainly sounds like something worth looking into. I have a great dermatologist PA who follows me for the eczema. I also treat with a topical called Eucrisa. Suggest also talking to the MPN Specialist about it.
Hope you get answers soon. Please let us know how it turns out.
I'm afraid the warm red face goes with the PV territory.
I've been on Hydroxycarbamide and the occcasional venesection for the past 6 years and no longer get the red face problem.
Depending on your blood counts you might ask if an experimental venesection would help - in my case, a venesection always reduces fatigue too.
Andy
Thank you Andy. It is encouraging to know I won't always have to deal with this.
I experienced this before having my blood levels corrected by taking hydroxycarbamide. Before I was diagnosed with PV I thought I was just following my grandmother as she had very red cheeks. Now I wonder if she had blood/ bone marrow problems.
My wife had this for a couple of years prior to her eventual diagnosis of MF she also had red purple toes during cold weather and an itchy back. She was diagnosed after tripping over while running, which ruptured her spleen which incidentally was six times normal size, now she hasn't one.
I am also suffering from this! I am also JAK2+ with PV and diagnosed early last year. I'm only on aspirin (and heparin while pregnant). wasn't sure if it was pregnancy related or was separate rosacea issue. As I haven't seen a consultant face to face since my diagnosis, they haven't seen it. I use The Ordinary Azelaic Acid to calm it. I'll mention it to my consultant next week and see what they say. Sorry I can't be more helpful but thank you for raising it!
I have a tube of The Ordinary Azelaic Acid. I'll give it a shot. Maybe it will help until I can see my dermatologist.
I had this & red palms of hands,red eyes & the itching,not to mention painful red toes.Was diagnosed with P V Jak 2 nearly 12 yrs ago.Venesections first ,then on to Hydrea ,now on Rux.Have lots of tiny spider veins ,face ,legs body but no pain or itching.It all goes with the disease unfortunately.Hope you soon have some relief.,it's so awful to have the redness,I always was embarrassed people thought I was a drinker.....I definitely am not!!Best to you.
It is funny you say that. My mother accused me of drinking too much due to my red cheeks.
The other thing is not to get too hot especially the sunny days.Sure you have been advised not to have too much exposure to sun light.Iam blonde ,blue eyes ,fair skin,so keeping cool is my mantra...still had skin problems over the years with Hydrea...better since Rux. Odd isn't it how we get the rosy doll look & people also say how well we look !!!I never ever found anything to disguise the redness,don't like make up cover...As I say only time now I flush up is getting too hot.Good Luck.
PV, Jak2+ diagnosed Jan 2020 - I’m on a baby aspirin morning and eve, and Ive been on pegasys 45mcg for almost a year. Occasional phlebotomy when my hct is over 45.
Often I wake up and my face is red, hot and flushed like you’re describing. It generally goes away by mid day. Some days are definitely worse - others more mild, and others not there at all. I havent been able to tie it to a anything, eg, specific food, activity done during the prior day, etc.
I feel your pain and following this thread in case there is a solution or a link to something out there!
I too get red cheeks that come and go some times worse than others. I have PV Jak2+ Diagnosed July 2020. Not yet found a cure other than makeup coverage.
I will drink water to hydrate and flush. Cool cloths over the face is helpful too.
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