Connect
treatment of severe osteoporosis with HPP
Hello,
I am 72, now -4 DEXA down from -3 in one year after some earlier success with Forteo daily injections. and 2 years of Reclast. My dr. said it was too much medicine. In doing nothing, I am worse than before any medication. Prolia did not work. Strensiq was a disaster. I could barely move. I am now recommended Tymlos or Evenity by dr with a second opinion. Are there any opinions of which is better? I have gotten weaker with tendon tears, and receiving shock wave therapy for hip and foot and physical therapy. I need to decide.
Like
Helpful
HugInterested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.
Connect
@dpearl
It’s good you got that second opinion. From what I’ve gathered, someone with HPP should steer clear of bisphosphonates like Reclast, Fosamax, or Prolia.
Since Evenity starts out as an anabolic then converts to a antiresorptive (like a bisphosphonate) you might be better off with Tymlos, since it’s strictly an anabolic (focuses on growing new bone)
Has the doctor mentioned what you would take after that? As typically Tymlos is followed by a bisphosphonate to hold on to the gains.
However with your HPP diagnosis, the path forward will probably be different than for most.
Best of luck to you, the journey is not always easy.
-
Like -
Helpful -
Hug
2 Reactionsdpearl, interesting that you maintained on Reclast with HPP. I think Tymlos is a better bet, but you'd need close monitoring for hypercalcemia. This article is interesting https://pmc.ncbi.nlm.nih.gov/articles/PMC9646966/.
Romosozumab (Evenity) does add bone quickly, but then you have to decide what to take in the following year. which is usually the not recommended bisphosphonates.
You can repeat Forteo and that might be the best choice given your prior success. The second go around on Forteo is said to be as robust as the first. Doctors are prescribing additional years of Forteo now that the black box has been lifted. I'm on a third year, and the endocrinologist tells me that I can remain on it until my T score is -1.
Romosozumab is thought to be hard on tenocyte structures especially at the tendon to bone junction because it blocks sclerostin.
-
Like -
Helpful -
Hug
2 Reactions@sondrachristo1
Thank you for writing. The Reclast worked for me after forteo, then all gains lost and worse with nothing. The 2nd opinion was the Evenity as such severe bone loss. There is less research with this with HPP and I am not a typical HPP with such a negative response to Strensiq. I am finding it difficult to find further research.