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Stopping Tymlos

Posted by mdm30 @mdm30, Mar 21 9:01am

I was given two different perspectives on urgency to begin a new therapy after completing 2 years on Tymlos. One Dr. siad that I could wait a month before starting another treatment after Tymlos (while we wait for apporval for Evenity) while another Dr. suggested I start on a short term, 1 month, dose of Fosamax for these few weeks while we wait for approval to start Evenity. Not sure what to do with this conflict of information. Others have similar expereiences where there was a wait time between Tymlos and another med.?

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dmshope | @dmshope | Sep 24 11:53am
In reply to @2024tymloshelp "I am a 65 year old woman . I was on HRT for 5 years after..." + (show)
Profile picture for 2024tymloshelp @2024tymloshelp

I am a 65 year old woman . I was on HRT for 5 years after menopause which froze my bone loss and kept bones stable but I didn’t gain bone on HRT.
I went on Tymlos for a year and no gains were shown on dexa (except for a little bit in my arm bone). I am osteoporosis minus 3.5 and hip is minus 2.5
This has remained the same after a year on Tymlos .
My prescribing doctor suggests I continue Tymlos for the second year to see if anything improves . BUT I have started having severe neck pain at night with no injury causing it .
I just read Tymlos is associated with neck/shoulder pain in some people though it is not listed as an official drug side effect.
Now I’m worried this strange neck pain could be from the Tymlos . Osteosarcoma ?!
Yikes . I think I’ll ask my dr to test me for that . X-rays?

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I advise getting second opinion asap. Tymlos shows best gains in the first year so a second year does not seem to be a valid consideration. ALso since you have no gains there is something that has not been addressed. Please read Great Bones by McCormick - excellenet reference to help you understand some reasons why tymlos is not as effective as expected ( for example IGF-1 low) . That is the question I would ask your endo too. YOu need enough protein, cal , d and k and other supporting nutrients to build bone - so diet needs assessed. Also check that you do not have high urine calcium making the body expell more cal than normal - and that your D is not too high. ( mine was too high) Also severe neck pain needs addressed - you cant live like that.
Tymlos may work for you after you get the answers and correct imblances to the above... Hope this helps.... Stay postive and do your homework and build a goo support team.

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