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Bone pain from ET Jak2 taking HU

Posted by 1995victoria @1995victoria, Jun 13, 2023

I suffer with bone pain in my shins and toes. Dr says not ET or HU, just wondering if anyone else suffers from bone pain. It started a year or two before being diagnosed with ET

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Pumpkin1 | @pumpkin1 | Jun 15, 2023

I have night pains in my knees and lower legs especially when in bed. I do have ET but only take low dose aspirin. Started a couple of years before my diagnosis. Doc doesn’t think the pain is from ET. It may originate from back area, he thinks.

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2 replies
1995victoria | @1995victoria | Jun 15, 2023
In reply to @pumpkin1 "I have night pains in my knees and lower legs especially when in bed. I do..." + (show)
@pumpkin1

I have night pains in my knees and lower legs especially when in bed. I do have ET but only take low dose aspirin. Started a couple of years before my diagnosis. Doc doesn’t think the pain is from ET. It may originate from back area, he thinks.

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Thank you for your comment. I also have especially at night in bed. During the day I have back pain, not at night. sigh....as Bette Davis says "Growing old isn't for sissies"

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nohrt4me | @nohrt4me | Jun 15, 2023
In reply to @pumpkin1 "I have night pains in my knees and lower legs especially when in bed. I do..." + (show)
@pumpkin1

I have night pains in my knees and lower legs especially when in bed. I do have ET but only take low dose aspirin. Started a couple of years before my diagnosis. Doc doesn’t think the pain is from ET. It may originate from back area, he thinks.

Jump to this post

Just a thought: Did you ever have a bone marrow biopsy to look at fibrosis in marrow?

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1995victoria | @1995victoria | Jun 15, 2023

yes, i've had BMB about 2 years after, but elevated platelets triggered the test, not the bone pain. I've raised the question repeatedly with onco/hemo and pcp.......haven't gotten any answers......so I live with it

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carefor | @carefor | Jun 16, 2023

I have ET severe pain in my lower tail bone when I stand up then it subsidies -in addition to joint pain , as far as my legs I need to walk at least 1/2 hr a day plus leg massages to legs at times.
The leg center found a blood clot durning an altrasound so . .. I am on blood thinners in addition to HU. I hope you get some relief .

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1995victoria | @1995victoria | Jun 16, 2023

I've had shin bone pain (and toes) for at least 6 years now. The only thing that helped before ET diagnosis is nightly aspirin, just so I could sleep. The bone pain is only at night in bed???

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1 reply
bevjg | @bevjg | Jun 17, 2023
In reply to @1995victoria "I've had shin bone pain (and toes) for at least 6 years now. The only thing..." + (show)
@1995victoria

I've had shin bone pain (and toes) for at least 6 years now. The only thing that helped before ET diagnosis is nightly aspirin, just so I could sleep. The bone pain is only at night in bed???

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You should consider having it evaluated by a neurologist. I have neuropathy in both feet and ankles. At night it resembles bone pain. Now I'm on medication that helps but you just learn to live with it. It is not related to my ET or the HU that I take daily.

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