1. < Osteoporosis & Bone Health
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HPP and what to take for bad dexa density

Posted by 2024tymloshelp @2024tymloshelp, Mar 21 2:29pm

This is the first place I have ever heard of HPP (an inherited soft bone disease that can be mistaken for osteoporosis?!)
Question to any of you who know about it: If the ALK blood test number has always been in normal range on my blood tests does that mean I definitely DON'T have HPP?
I am wondering because I do have the other physical symptoms of it!
I am finishing up 2 years of Tymlos in september and IF I have HPP it looks from some comments here that the second drug I take should not be a bisphosphonate? yikes

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

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mcchesney | @kathleen1314 | Mar 21 3:17pm

"Hypophosphatasia (HPP) is diagnosed by finding persistently low serum alkaline phosphatase (ALP) enzyme levels, often combined with high vitamin
(PLP), recurrent stress fractures, and early tooth loss (before age 5) or premature adult tooth loss. It is frequently mistaken for osteoporosis, but unlike osteoporosis, it is caused by a genetic defect that prevents proper bone mineralization"
https://my.clevelandclinic.org/health/diseases/hypophosphatasia.
Also, there is a genetic blood test called ALPL Gene Testing or ALPL Sequence Analysis. Because HPP is a rare disease, this test is often part of a broader "panel" that looks for multiple bone-related conditions at once.
https://fulgentgenetics.com/Hypophosphatasia

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wondering1 | @wondering1 | Mar 22 6:07am

@2024tymloshelp , I’m following your question because I just found out I have HPP. I have no symptoms but my alkaline phosphatase levels are very low, as are my CTX and P1NP. The genetic testing shows I have the ALPL mutation.

Was about to start Tymlos but we are now regrouping in light of the issue you mention. Anti-resorptives are typically prescribed after Tymlos to lock in gains and are riskier for people with HPP.

I have an appointment with my endo in 2 weeks. Will let you know what I learn.

In the meantime, would love to know if anyone else has had experience with this.

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oopsiedaisy | @oopsiedaisy | Mar 22 7:36am

Apologies if you posted elsewhere but why do you suspect you might have hypophosphatasia?

Here is a case of a 36 year woman with HPP who had normal ALP levels (alkaline phosphatase). She did have other symptoms of HPP so in this case they couldn’t rely on her ALP levels to confirm the diagnosis but had to confirm it with genetic testing. It does appear to be rare that someone with HPP has normal ALP levels but it appears it can happen.

I also found references to using Evenity asa possible treatment; https://pmc.ncbi.nlm.nih.gov/articles/PMC9646966/

I hope your doctor is planning to perform genetic testing to confirm whether you have HPP.

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oopsiedaisy | @oopsiedaisy | Mar 22 7:38am
In reply to @wondering1 "@2024tymloshelp , I’m following your question because I just found out I have HPP. I have..." + (show)
Profile picture for wondering1 @wondering1

@2024tymloshelp , I’m following your question because I just found out I have HPP. I have no symptoms but my alkaline phosphatase levels are very low, as are my CTX and P1NP. The genetic testing shows I have the ALPL mutation.

Was about to start Tymlos but we are now regrouping in light of the issue you mention. Anti-resorptives are typically prescribed after Tymlos to lock in gains and are riskier for people with HPP.

I have an appointment with my endo in 2 weeks. Will let you know what I learn.

In the meantime, would love to know if anyone else has had experience with this.

Jump to this post

@wondering1 I’m glad that your doctor figured this out. I wondered why I was tested for ALP by my endocrinologist and now I understand why. Wishing you well with your treatment.

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2024tymloshelp | @2024tymloshelp | Mar 22 10:50am

PLEASE DO keep me posted!
I had never heard of HPP
Until reading this week’s posts here!
I am definitely going to ask my rheumatologist to do some tests on me before I decide what to do after Tymlos!
Thank you so much !

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2024tymloshelp | @2024tymloshelp | Mar 22 11:10am

Thank you so much ! I’m definitely going to ask my doctor to screen me for HPP.
Knowledge is power

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2024tymloshelp | @2024tymloshelp | Mar 22 11:42am
In reply to @oopsiedaisy "Apologies if you posted elsewhere but why do you suspect you might have hypophosphatasia? Here is..." + (show)
Profile picture for oopsiedaisy @oopsiedaisy

Apologies if you posted elsewhere but why do you suspect you might have hypophosphatasia?

Here is a case of a 36 year woman with HPP who had normal ALP levels (alkaline phosphatase). She did have other symptoms of HPP so in this case they couldn’t rely on her ALP levels to confirm the diagnosis but had to confirm it with genetic testing. It does appear to be rare that someone with HPP has normal ALP levels but it appears it can happen.

I also found references to using Evenity asa possible treatment; https://pmc.ncbi.nlm.nih.gov/articles/PMC9646966/

I hope your doctor is planning to perform genetic testing to confirm whether you have HPP.

Jump to this post

@oopsiedaisy

I have inflammatory joint pains ( I am 65 years) , my knees have always cracked loudly , I am petite,
And someone in my family in their early 60’s is starting to lose their teeth oddly. ( I know these things are random ) but I figured I’d ask my doctor if I have the hpp gene before I agree to take a bisphosphonate

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