Tymlos or Forteo to treat osteoporosis with underlying adult HPP

Posted by junonia13 @junonia13, 15 hours ago

Anyone have experience taking Forteo or Tymlos for osteoporosis with underlying Adult HPP?

I am in a unique situation. I have adult HPP (confirmed with genetic testing and labs, etc.) but thankfully, I do not yet have any outward symptoms of HPP( Hypophosphotasia). No broken bones, etc. but I do however have confirmed osteoporosis.

Patients with confirmed HPP cannot take any biphosphonates. So, I'm reading I'm limited to Tymlos, Forteo and maybe Evenity.
Years ago, I wish I could have taken hormone replacement therapy but couldn't because of family history risk (since then no family risk.)

Those with active HPP with symptoms usually take enzyme replacement therapy to replace the low alkaphosphotase, but without active symptoms, some doctors recommend Tymlos or Forteo.

Wondering if anyone has HPP and is taking Tymlos or Forteo? What kinds of side effects have you had? And what did you take after 2 years of treatment to lock in the results?
Waiting for a specialist appointment.
Thank you.

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