Hi all. At every appointment my doctor asks if I’ve had easy or unexplained bruising. I’ve always bruised easily, but in the last four weeks have had three large bruises in areas I didn’t injure. Two of them seem to have started internally and spread out toward the skin because the area was very sensitive and felt like it was bruised for several days before any discoloration showed up on my skin. By the time the bruise was visible, it was changing color (like an old bruise that was starting to heal). Right now I’m waiting for a call back from my Hematologist’s office because all this new bruising is making me nervous. I emailed them about it a couple days ago, but hadn’t heard back yet, and now another new bruise is forming. I figured someone here would have had a similar experience and could offer some emotional support.
I was just diagnosed with ET in March, and since then was hospitalized for a GI hemorrhage a few months later. My doctor initially told me my version of ET (CALR) is a SLOWLY progressing disease … but it sure hasn’t seemed SLOW to me!
Have you dealt with new unexplained bruising?
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GrammyG
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hello GrammyG, I am so sorry that you are experiencing bruising, one of the symptoms people with ET can experience is bruising see the list of other symptoms here
it is good that your haematologist has asked you about this and is looking into it for you, and hopefully you will hear back very soon. Best wishes, Maz
Similar to you, I was diagnosed with ET (Jak2) back in April 2021 after having joint pain that was getting worse since October 2020. My platelets seem to hover in 470-530 range, only using 81mg aspirin daily for treatment.
The joint pain - meaning feeling like someone took a hammer to my kneecaps as example - took a while to resolve after starting aspirin, so I was using Motrin / Ibuprofen in bursts to try to resolve the pain. I initially didn't connect the blood thinning of Motrin, but I experienced exactly the same issues you are having. Random invisible bruises I could spontaneously feel under the skin, then would slowly turn yellow and spread, turn purple, pain would slowly recede, bruise would fade. In my case I didn't do anything except stop all blood thinning medications except the aspirin and mine went away on its own, and I haven't had any others since June of this year.
Not sure if helpful to you but I hope yours resolves as mine did.
Thank you, BlastedKnees. It definitely helps to hear that others have had similar experiences - although I’m sorry to hear about all the pain you’ve had! That knee pain you described sounds awful! So glad it’s better these days!
Baby Aspirin is the only thing I’m currently on that I know of that might contribute to bleeding/bruising. I’ve asked my Hematologist Oncologist if I should continue the aspirin since I’m prone to bleeding, and for now, he says I should. He’s ordered a bunch of tests - but nothing new to report so far. I’ve been feeling anxious about this new type of bruising, especially given my new joint pain and unrelenting fatigue since my surgery three months ago. In the back of my mind, I keep wondering if my ET is transforming - but I get the sense it’s too early for that yet. Still, the question lurks in the back of my mind. It surely seems like something has changed!
Thanks again for your kind words of encouragement!
Hi GrammyG. I have ET CALR positive also (diagnosed In May of 2021). I used to bruise real bad before I knew I had ET and now it seems to just be smaller spots unless I bump my arms on something, then I bruise real bad. I am on 500mg of HU four days a week and 1000 mg on Monday, Wednesday and Friday. They just put me on the additional 500mg yesterday because my platelets went from 615 to 681. Not sure why they went up all of a sudden. Hope they can help you with the bruising. Praying all goes well for you.
Thanks for your support and prayers, Blueseas! It’s nice to meet someone else with a recent CALR diagnosis, too! It also helps knowing I’m not alone with this bruising. It’s reassuring knowing others have been through it and are doing well!
My doctor briefly had me on HU daily to bring my platelets down (from1280) before my surgery. They dropped pretty quickly, but have climbed back up to 800 since then. For now, he’s just treating me with Baby Aspirin (until I reach age 60 (in 3 years). All this watching and waiting is making me nervous, though. Don’t get me wrong, I wasn’t excited about starting HU when he prescribed it - but at least it gave me the feeling that I wasn’t just waiting for something else bad to happen. It’s been such a wild ride over the past several months!
It’s encouraging to hear that HU has already helped a little with your bruising. I hope things stabilize for you soon with your dosage change!
Hi, I missed your post somehow. Sorry to hear about the bruising. It’s weird I too bruised easily all my life. Just weeks before diagnosis whilst on holiday a friend commented on my bruises I just dismissed them as a normal occurrence. I seem to go through phases. A few large ones then nothing . At one time I took turmeric , that coincided with a few large bruises. I was advised to stop taking it.
It will be interesting to know if your bruises diminish when your platelets lower.
Thank you, Wyebird! That’s interesting about Turmeric… I was considering trying it at one point, but then read that it may not be good for people with bleeding tendencies, so I opted to skip it.
For a few weeks, it seemed I was getting a new, large, unexplained bruise every week or so. Interestingly, for some reason, they seem to have stopped. I have no idea why - didn’t seem related to the number of platelets, and I can’t think of anything much else that has changed. What a strange disease!
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