I’m PRV jac2pos. On Hydroxycarbamide and aspirin for last 15years, venesection about 4 per year.
Last three nights awakened with very severe nose bleeds, frontal headache.
Panicked and called 111for advice, wanted to send ambulance but during course of conversation bleeding eased off. Couldn’t contact my Haem Oncology nurse practitioner but will ring on Monday.
Meantime has anyone experienced this, what is the cause. Won’t take aspirin til I talk to nurse. I’m scared to go to sleep tonight in case same thing happens. !
Be good to hear from you. X
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Mysi
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Oh Mysi. Sorry I don’t know how common that is, I’m on Hydroxy quite a high dose I have not experienced this. Just sending you thoughts and hope you are well tonight. Maybe you could get hold of your nurse tomorrow .
Hi I have ET calar and on hydroxi and aspirin I had a nose bleed last week in work I thought it had somethink to do with the aspirin so I called a nurse to see if I wud be best to stop taking tube aspirin and she advised me to carry on and not to worrie as it was only bleeding from 1 nostril I have been ok since and I am awaiting g to go to see my hemo next week so I hope this helps I would also try not to worie and take care best wishes xo
Dear Mysi. I’ve had a similar experience - happened while I was away from home on a residential course, on my own, about 6 months or so after my diagnosis with MF, and it was terrifying, tho ultimately harmless. I was advised to pack my nostril with a sterile dressing until the bleeding had stopped , and was given an antibiotic cream ?NASEPTRIN? Something like that to use . My understanding was that I’d had a minor infection that my impaired clotting mechanism couldn’t deal with. If you’ve got any kind of fever ( I don’t think I had) then in your position I’d maybe head off to an out of hours centre tomorrow,for a check over. Saturday night at A and E is likely to be a place to stay away from.
Just a quick question Mysi, do you know if the aspirin you are taking is 'Enteric-coated' or not?
I have also had bad nose bleeds in the past, when taking both HU & aspirin, and I was to later learn that the aspirin I was using at that time was NOT 'enteric-coated' , and once I change the issue largely went away...
In any event, should anything like that happen to you again, I should think getting yourself to an ED might be wise, ... just to be safe etc...
Best wishes & I hope you get it all sorted soon...
I get the occasional mild nosebleed but I think mine is probably due to a weak blood vessel as its always the same nostril, also I had them in my thirties and had the blood vessels cauterised twice then later had the cream. I then didn't have any problems until starting clopidigrel after a stroke, when due to the thinner blood they started again occasionally. Now after the pv diagnosis and medication I tend to get one every couple of months. It's probably time for another cauterisation or cream. When you get a nosebleed the best thing to do is keep still, pinch your nose and breath through your mouth. Not easy when you're in the middle of Sainsburys!
I ended up in A&E with a nose bleed. It went on for hours and I ran out of towels. My kitchen was like a crime scene. I Was taken in an ambulance. My nose was packed with a nasal tampon. Very painful. I waited several hours to be seen. The bleeding still didn't stop so I was transferred by ambulance to another hospital which had an ear nose and throat department. After waiting hours a nose specialist cauterized the bleed. It then stopped. I had to ring a neighbour to ask her to get me home by taxi. I got home 24 hours later completely exhausted. The cause of the nose bleed was ibubrofen which I had been taking in large doses over several months for sciatica. I don't touch the stuff now.
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