Posted , 5 users are following.
My face stays red most of the time. It seems to be worse after watching TV. I understand that this is a common symptom of PV, but I'd like to know what I can do to get relief from the burning sensation.
0 likes, 4 replies
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Zapamania Papoo
Posted
Hi my face got red when my platelets were high. That's how I knew. Since being on Jakafi it's gone. My face never burned just got red. And I don't understand the tv connection at all. Are you on meds? Phlebotomies? Zap
frances20411 Papoo
Posted
mmy HCT numbers are incresing when I see this.
Sorry! I am not help with your face condition.
jo49517 Papoo
Posted
Jo
keith28441 Papoo
Posted
Hello Papoo
The plethora in your face and hands usually fades once you receive treatment i.e. medication and/or phlebotomies/venesection. With regards to the burning sensation in your hands and feet, cooling the skin with a fan or cold water, or raising the affected hands or feet may relieve the pain. However, using ice or soaking the hands or feet for long amounts of time isn't recommended, as this can lead to hypothermia or damage to the skin, causing ulcers. A lot of people think you can only catch hypothermia being out in the extreme cold or stranded in the sea but apparently even doing something simple like leaving your hands in ice cold water in the comfort of your own living room for a period of time can cause hypothermia. There's also a risk that the change in temperature will trigger a reactive flare-up when the hands or feet are removed. I further read some time back that even though a cool environment is helpful in reducing pain during attacks, the use of cold baths or showers is generally discouraged again because of potential skin damage. Having a cool/temperate shower (not cold) may help as it does with those who suffer from pruritus. I would recommend that you speak to your Haematologist to see if there is any medication he/she can prescribe for you to help relieve your symptoms. The burning sensation in your hands and feet is caused by nerve pain known as erythromelalgia, which can be associated with Polycythaemia. I am no Doctor but have read that drugs used for other types of nerve pain may reduce symptoms of erythromelalgia.. This includes anti-epilepsy drugs such as gabapentin, or low doses of tricyclic antidepressants such as amitriptyline, which can be effective in treating pain caused by increased sensitivity or damage to the nervous system. Drugs used for high blood pressure or Raynaud's disease can encourage the blood vessels to widen, and may also be beneficial in treating some types of erythromelalgia. However, as mentioned, I am not a Doctor so please speak to your Haematologist to see if he/she can help.
Hope the above helps a little.
Kind regards
Keith