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.

@dmshope Like you I had negative genetic testing for HPP as well as normal labs looking for other causes of low alkaline phosphatase which showed up below normal in June (age 73 in August). The value has been in the normal range before then. I am getting it rechecked hopefully in October. Initially I was going to go on Evenity but the bone doc wouldn't do that before making sure I tolerated Reclast because she said when you take Evenity it builds bone rapidly but if you stop without maintenance immediately after that you lose bone rapidly and can end up worse off. The other maintenance option Prolia is contraindicated for me. But then this low alk phosphatase came back and so the feeling from professionals is that the safest option for me is either Tylmos or Forteo at least for two years and by then hopefully there would be an option that is safe or I would have clarity on the HPP issue. STrensiq is too expensive and just unaffordable. Medicare doesn't cover it and the cost is horrific. So NO on that one. But the experts told me HPP patients go that route as it deals with the underlying problem. So a dilemma for sure. I have to decide before January (new medicare part D plan) which one to start and not looking forward to either one. I am someone who has bad side effects to any regular medication and as it is I already deal with Long Covid since March 2021: I have constant pretty severe myalgia’s (muscle pain) , increased inflammation leading to bulging veins, headache, G.I. upset, paresthesias, and fatigue among other more intermittent problems. . The myalgia and fatigue are the most problematic and daily. I also have intermittent mast cell activation manifested as hives and itchy skin. I suspect these daily shots will make it all worse. I am literally between a rock and a hard place. I feel like I have no choice. Had an insufficiency fracture in feb. 2026 in an osteopenic hip (not osteoporosis there) that I thought was muscle strain and May 2026 DEXA showed osteopenia in hips worse after 3 years to -4.3 in spine. No fractures there yet but my PCP and Bone specialist both say the risk for compression spine fractures is there. I blame the damn PPI's for the severity that I took for GERD for 9 years until I stopped them in 2009 because they began reporting about long term effects like osteoporosis ---back then GI docs were pushing them big time to prevent cancer. Have done better off them continuing my life style changes etc. My bones were normal before starting PPI's but after them osteoporosis in my back. Felt all the treatments problematic in 2015 when my scan was no longer normal. Have done weight bearing aerobic exercise since age 16, weight training and balance work added in my 40's, have had a healthy diet etc. None of this preventive work on my part was enough when PPI's did it's damage.