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Stopping Tymlos

Osteoporosis & Bone Health | Last Active: Sep 24 11:53am | Replies (21)

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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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Replies to "I am a 65 year old woman . I was on HRT for 5 years after..."

I have severe osteoporosis as well. Had 3 compression back fractures before starting Tymlos. All are now healed and referred to as chronic. Prior to starting Tymlos my bone density was going down on annual tests. Just had my first bone density after one year on Tymlos and now there is no more decrease and a very slight increase in bone density in my lumbar back. My doctor says that you rarely see an improvement in bone density until almost right before the 2 year period. I highly doubt your neck pain is related to the Tymlos but I would get that checked out. I would not stop the Tymlos because you can't see a bone strenthening. I would give the Tymlos 2 years which is what the research calls for. Katherine

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.