HRT and Strensiq / HPP symptoms

@dmshope i was recently diagnosed with HPP. Other than my osteoporosis, I don’t have common HPP symptoms, and haven’t fractured yet either. My doc mentioned Strensiq but didn’t recommend it at this point.

Because of the HPP, I’m not taking any osteoporosis meds now, except HRT, which I’ve been on for 1-1/2 years. My endocrinologist said the HRT is my best bet for now.

She said that because HPP is rare and there isn’t a lot of good data about how to proceed with osteoporosis treatment in patients with HPP. But she said that strangely after seeing few patients with HPP for many years, she’s seen a huge uptick this year. She’s hoping to learn more at this year’s bone conference in Boston.

I’m sorry that you appear to have HPP. Good luck as you try to sort through this. And if you learn anything helpful, I’d love to know.

@wondering1 Gosh I so appreciate you taking the time to write to me of your expereinces.
Thank you. At least one person wiht HPP is on HRT successfully.
May I ask what dosage HRT you are taking??

My endo was concerned that since HRT is a mild antireposrtive, it may be risky with HPP. This is due to the fact that bisphosphanete which are also antirepsotives are strictly prohibited with HPP. However HRT is not the same mechanism as bisphosphantes.

Moreover if needed in the future, tymlos anabolic PTH is sometimes used for healing with HPP and is not contradicated for HPP.

Sending hugs and healing light. May you be well.

@dmshope Lastly, would you feel comfortable sharing your endos contact information?

@wondering1, just in case you're not aware, you can send a private message to another member to protect sensitive information if needed.

@dmshope It makes me feel so good to know you are out there facing something similar...even though I wish neither of us was facing it.

I'm on .05 mg estradiol patch and 100 mg micronized progesterone pill.

What you are saying about estradiol having slight anti-resportive properties is true. What my endocrinologist (head of the bone clinic at Tufts Medical in Boston) said exactly was "It's great you are already on HRT. If you weren't, that is what I would have suggested."

She did say that Tymlos is ok with HPP. And I did a little research and saw several mentions of that. The problem is what to do after Tymlos. My understanding is that if you don't follow Tymlos with some type of antiresorptive, you lose your gains. So while Tymlos is ok for us HPP folks, without a way to lock in the gains afterwards, I'm not sure how much good it would do.

For what it is worth, several years before anyone realized I had HPP, I had 5 years worth of antiresorptives and nothing terrible seems to have happened (yet??).

Hang in there! And please keep in touch!

@mayblin I didn't realize! Thank you.

@mayblin I did not knwo about the direct messaging,
How do you do that??

@dmshope, while reading a post, click on the person’s profile photo (most just have a grey head), then click “view profile”, then click “send private message”

Great, thank you.