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Eileen,
Your case sounds similar to mine. I was diagnosed in 2023, ET/Jak2, and take HU 500, 4x week. I also need daily iron. My platelets were at 800K, but now in the 500s, and my doc is okay with that since the rest of the blood work looks good again. I have a new glitch. My recent bone density test showed a big change since being on HU for 3 years--and 4x a week is a low dose. I can't take oral bone meds, and now they are considering Prolia. I'm not happy reading about the side effects related to additional bone issues that can be caused by Prolia. Have you been checked for your bone density? I have been in osteopenia for 30 years, but it was stable with exercise, weights, calcium supplements, and diet. It jumped in the last 3 years, and now I have a 35% chance of a major fracture in the next couple of years. At 72, I feel fine, walk, take calcium and enjoy family, friends, and hobbies. Treatments lead to more issues. It's a bit frustrating.
Karla
ET/Jak 2
Replies to "@eileen11108 Eileen, Your case sounds similar to mine. I was diagnosed in 2023, ET/Jak2, and take..."
Not fair! You've been taking good care of your bones.
I have thinning bones too, still in the osteopenia stage.
At my upcoming check-ups with my PCP and my oncologist, I will ask what's the best strategy for someone with both ET & osteoporosis. Will share what I hear.
If we all do this, we'll be better prepared when it's time to speak with our own doctors.
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@mdterp76
Hi Karla,
I have never had a bone density issue. My last one said to repeat in 10 years. I grew up drinking lots of milk, cheese, ice cream, and did a lot of walking,
So I am 82 now, have balance issues, AFib, stage 3A kidney and ET JAK2. Getting old requires courage.
I live in a senior complex and it seems many women are on Prolia, I do not know much about it.
When I have my next Medicare Annual visit I will ask my primary about it.
Best wishes, Eileen