Does ET affect my bone density?

[buddin11]

[Mazcd Partner MPNVoice]

Hi Buddin11, I have had some advice from Prof Harrison for you and she has said that no, it shouldn't affect your bone density. Kind regards, Maz.

[Aime]

Hi Buddin11 - thank you for asking this question and thank you for the answer Maz. I have PV but have always wondered if the aches and pains in the joints and bones were related to bone density. Kind regards, Aime

[buddin11]

Thanks, MAZCD! I recently have been having a lot of back pain, and my chiropractor does not want to do his usual adjustments for fear that my bones might be compromised. I also have peripheral neuropathy and fibromyalgia, so it's SO difficult to know which disorder causes which symptom! So glad I came across this site! Thanks to you, also, Aimee.

[Jocro]

Hi Buddin11! I was diagnosed with ET more than 25 years ago and am now 75 years old. I recently had a bone marrow density scan and all was normal. ET may effect some ET patients but definitely not all of us. It is always a good idea to get sufficient exercise, calcium and vitamin D for healthy bones.

[buddin11 in reply to Jocro]

Thanks, Jocro! I was diagnosed a little over two years ago, but just recently started taking the Hydrea. I had been having a lot of back pain that was keeping me up at night, and my chiropractor was hesitant about doing normal manipulations on me. I just turned 60, I'm glad to see others of "a certain age" that have had this for awhile. Ha!

[Seea]

Hi Jocro

Have you been on Meds for your ET, what meds and for how long? I find it so hopefull to hear you have had it for more than 25 years and all was normal

[Jocro in reply to Seea]

Yes, Buddin 11, I have been on HU and 81 mgs of aspirin for all that time. I also had Non Hodgkin's Lymphoma diagnosed about 6 years ago, was successfully treated and have been in remission for over 5 years. I also had a knee replacement this past August and am playing tennis every other day now. You can be assured that those of us with ET can and do live long and happy lives. Just keep on keepin on, take good care of yourself and have fun!

[maestromaverick]

Hi buddin11 I have PRV and last december broke my hip . Because I'm only 55 I was sent for a bone density scan and was told I had quite severe osteoporosis . I have been on hydroxycarbamide for almost 4 years and the bone people say this could be causing it . My haematologist says not . So lm non the wiser but could MAZCD ask prof Harrison if it could be the hydroxy .

[Mazcd Partner MPNVoice in reply to maestromaverick]

Hi Maestromaverick, yes of course I will ask Prof Harrison for you, I will put her answer on here for you as soon as I get it. Maz.

[Mazcd Partner MPNVoice]

reply to the question from Maestromaverick re hydroxycarbamide possibly causing osteoporisis - she is not aware of this complication. Hope this helps, Maz.

[maestromaverick]

Thankyou Maz , that has put my mind at rest and will carry on with the hydroxy.