rosacea and other rashes.

[03271115]

Has anyone had Roascea flair ups with Essential Thrombosis and other itching burning and tingling in the arms?

[hunter5582]

I have not heard of ET causing rosacea, but it can cause other skin issues like erythema. ET can also cause itching-tingling-burning. These are microvascular issues that should be reviewed with a MPN Specialist.

[03271115 in reply to hunter5582]

yeah it’s sad. I live in and I’ve been to three different supposedly ET Hemotologist oncologist and not one of them is aware of skin rashes so weird. They think I’m fine.

[hunter5582 in reply to 03271115]

One wonders of the "supposedly" adjective is accurate. Therei s not question that itching-tingling-burning sensation can be associated with ET. Note also that erythema, which can be confused with rosacea, can also be caused by ET. Any hematologist with MPN expertise would know this. You are not "fine" if you are having bothersome symptoms. That is medical gaslighting. Suggest a true MPn expert doc would likely provide better results.

[03271115 in reply to hunter5582]

You are 100% Hunter! I have had ET for six years. I am one of the lucky ones because my platelet count has stayed below 400. I had the bone marrow biopsy and I do have the JAK2 mutation. However, at my 6 month checkups, they barely spend 10 minutes with me. She just looks at my Blood says it’s good. Each visit I tell her about my skin being on fire and how it keeps me up all night long .... so, I get maybe three hours of sleep most nights I have to sleep in ice packs! The two days ago my face swelled up with red rashes and it burned, and stung, and my eyes were burning and swollen. I’ve been to two doctors now ( both MPN specialists) telling them about all my issues with Rosacea flare ups and itchy burning arms that feel like I am on fire. And how I have not slept in years because of my skin issues. Neither one of them thinks any of my symptoms are related to ET . In fact, they told me to go see a dermatologist.

Please, if anyone knows of a good MPN Doctor in Los Angeles, let me know. I believe that the two doctors that I saw think I am nothing more than a hypochondriac... it's really sad and quite lonely because no one understands....

[ciye in reply to 03271115]

I found cutting all b vitamin b supplements has helped calm my flare ups, I still have flare ups when I look and feel as though my face is scalded but not as frequently.We are gaslit by the medical profession ET is responsible for a lot more than they say.

[Cat1001954]

I get itching mainly in legs and ankles but sometimes on arms but not so much as legs I put aloe Vera gel on when really bad I keep it in the fridge so it’s nice and cooling

[Huginn]

Thank you for bringing this up. My conditions are mild and have been more or less dismissed when I’ve asked about them. Thank you for helping me join some dots. I wish you well.

[Stargaye]

Yes… I had so called “rosacea “ outbreaks twice now… in last 2 years…(since my initial ET discovery and diagnosis.. I am also JAK2 positive…and also experienced similar symptoms to your…. “my face swelled up with red rashes and it burned, and stung, and my eyes were burning and swollen.” It was so uncomfortable .

Both my GP and Haem… can’t explain or offer any insight of Dx. Also have weird red welts/ marks on my arms.

[Maxpenny]

yes I have flare ups of rosacea in fact very bad this week.. ET diagnosed a year ago and skin is definitely worse.

[quanglewangle]

yes - all of the above.!😀

[Hydrox]

I have had these rashes coming and going for a couple of years now. Called the specialist nurse who advised me to visit my doctor as would not be hydroxy related as I had been taking it for 12 years now.Doctor agreed with the nurse and told me to take anti histamines.

Took them for a week or so but stopped as they made me sleep all day.

Am now getting 6 monthly phone calls from hospital so am just plodding on.

I find it very strange that a lot of people on this forum are getting the same symptoms.

[Pam81-]

yes, I’ve had rashes that have came and went. One outburst was when I had terribly high numbers.

I also suffer from dry skin, psoriasis (no one else in family has it). I tend to think these things just come hand in hand with my condition although I’m told it’s nothing to do with it.