Petechaie

[Hayven]

I call these “episodes” and wonder if anyone else experiences them..

I’ll be perfectly fine..then I feel “icky”, like I have the flu, I will start sweating and get really hot and have an overwhelming feeling to cry..

Within minutes of the first tear, petechiae and blood spots appear on my hand and fingers on left side..if it’s a really rough episode both hands, but then I’m perfectly fine again.

The blood spots last a few days..recently they have just stayed or reappear on different areas but now I have them all the time..

I have had night sweats and thigh pain at night for years..but this is while I’m awake and moving and it’s controllable except for the emotional outbursts in public during those rare moments they overcome me..

I was diagnosed ET in 2016 although I do not carry the jak gene and doc tried anagrelide but it didn’t help my platelet numbers..I take a baby aspirin daily..

Just wondering what role the blood spots play if any for people with this disease..

[fee13]

I do have "episodes" of sweeping heat, feeling ghastly sick and nauseous, always in that order but not the petechaie or crying.

You should see your doctor about this as it seems to me you may be bleeding too easily. What are your platelet counts? Did you have a BMB to confirm ET and are you seeing an MPN specialist/haematologist?

[Hayven in reply to fee13]

635 last visit..they haven’t been below 500 or above 700 since diagnosed 11/2016..

[Mazcd Partner MPNVoice]

Hi Hayven, I would advise that you speak to your GP about this and then discuss further with your haematologist. Maz

[Anag]

Hi Hayven,

This is indeed a bit spooky for you. My mother-in-law had this a few times, but her thrombos were down to 45! She has the opposite illness of me. She fell slightly against the wall and her whole arm went red-blue. My mother’s thrombos were also extremely low and once her whole belly turned blue. It could be that your blood is super thin. Do you have ET CALR. Apparently, those of us with this mutation have a tendency to bleeding.

I found this simple and clear info on petechiae:

medicalnewstoday.com/articl...

When I start bleeding anywhere, gums, nose, a little cut that won’t stop, I reduce blood thinners immediately. If my hands are more sensitive when carrying groceries and they have the tendency to be redder and tickle more, I know my blood is too thin and I do the same. I Sometimes forcefully floss to cut my gum a bit. If I don’t bleed, I need more thinners, if I do bleed normally, I’m ok, if the bleeding continues for minutes, I reduce the thinners.

What I find important in your story is that this comes so suddenly, you get the bleeding and then you feel run over. Something to tell your doctor, but please try to keep an exact diary of this. Then you see a development or a pattern in these episodes. This will help your hemo to get a clearer answer.

Also, it may be good to check your blood pressure too. Especially during and after the episodes. That would give more info.

Personally, I have opted to run my own blood thinning regiment, with my doctor’s blessing. At platelet count 550, I only take 50mg aspirin 4x weekly, but also take Ginkgo (thins blood too) 60mg, 3x/day total: 180mg daily. This covers my needs. For me, this is the safest way. A month ago, I had a horrific nose bleed that finally stopped 1.5 hours later. blood too thin. Two weeks before, my doctor had increased my aspirin, since my platelets were up. I’m a hopper (thrombos go up and down from 450 to 700 despite meds. I stopped the Ginkgo immediately and it was out of my blood within 12 hours. Aspirin takes up to a week to get out of your system. I started my thinners again slowly 3 days later and I was fine.

What works for me does not work for everyone. We all have different sensitivities and reactions. I just want to say, there are other possibilities. We each need to really listen to and get to know our bodies well. It’s the key to finding balance, feeling secure in oneself and together with our doctors, living a good life.

I hope you get to the bottom of this! Sorry for writing so much. I’m a Details person. Cheers! Anag

[Hayven in reply to Anag]

Thank you!

[Cja1956]

I would go see your hematologist as soon as possible. I’ve had a few episodes like that over the years except for the crying and the blood spots. The last time it happened, I called my doctor the next morning and he told me to come in as soon as possible. I was very light-headed so my boyfriend drove me. My platelets had spiked to nearly 800,000. He increased my Jakafi and since then, I’m feeling a lot better with no episodes. I hope you find some answers soon.

[Hayven]

I have fibroids in my uterus..(which the crying could actually be attributed too since when this happens it’s so sudden my hormones are trying to catch up.)The petechaie??

But why does the hot flash, ickiness and nauseous actually happen with this disease? Does anyone know?

I’m in the US. There’s not a lot of information on ET to pull from here.