Tymlos or Forteo to treat osteoporosis with underlying adult HPP

@rjd
she is somehow connected to Penn State, and associated with OSS. However, she specializes in osteoporosis and bone health. Her offices are at the bone clinic at OSS. So, honestly, I cannot say what her specialty is but she is certainly a lot more up to date on osteoporosis treatments than other doctors I have been to.

@shirleyhibb26

@junonia13 , I just met with my endocrinologist today to talk about what to do about my osteoporosis now that we know that I have Hypophosphatasia (HPP). Here are some things she said:

While they were going to start me on Tymlos (I have the first dose in my refrigerator), they are no longer going to proceed with it because they do not want to give me any bisphosphenates, which you have to do after Tymlos. Because I haven't yet fractured and am very healthy and active, we are going to wait until there's a greater need to take on the added risk of bisphosphenates given my HPP.

She wants me to stop supplementing with Calcium, Magnesium and K2. She wants me to shoot for 800 mg calcium daily through diet only. She said with HPP, the calcium supplements won't be taken up into my bones and she is concerned about where it would go.

She said if I fracture, one thing they could consider is the medication for HPP called Strensiq. It is designed for HPP, but there is some evidence that it can increase bone density.

She also said that for years, she had trouble finding any patients with HPP and in the last year, she has had 10 patients diagnosed with it. She is thinking that the prevalence in the population may be a lot higher than they realized but that they weren't picking up on it. She expects that there will be at least one presentation on the topic at this year's bone (or endocrine?) conference that she said will be in Boston (I didn't get the exact name of the conference.)

Please keep us updated on what you learn! There aren't that many of us, so it would help to learn collectively!

@wondering1
Sorry for all you are going through. I have sever osteo and 3 major crtieria for HPP ( mutiple bilateral foot fractures. teeth issues , family similaritie - sister with foot fractures) but do not have clinically low ALP or Bone specific ALP ( all low normal) - and did not test positive for the gene. I was put on tymlos and had gains in spine but no where else; had a six week course of actonel and then evenity. I was non responsive to Evenity and have now sustained lower leg fracture.
This is indeed a puzzle and I have had almost every test know to endos to work on figuring out my cause. My diet is clean and nurtious - I can not weight bear due to weakness in the feet. I still wonder if there might be a 'cousin' to HPP that we havent found. And I will now be tested for subclincal Cushings. If you want another persective on HPP - I saw Dr C Bergwitz at Yale New Haven BOne center - he is very good with HPP. Prayers and hugs, HL

@dmshope , thanks for the pointer to Dr Bergwitz at Yale. I’ll look into it!

Good luck to you, too. For every gene mutation they know about, there are others they don’t, so maybe there’s another gene associated with HPP that they haven’t figured out yet… the “cousin” you talked about.

I have chronic anemia and Lukopenia. After 13 compression fractures in my spine, I did 24 months of Forteo in 2016. Maintenance drug following that has been Raloxifine, which held my gains with "no significant change". I have just now completed 18 months of the biosimilar brand of Forteo, Teriparatide and will go back on Raloxifine. I have had no further fractures since 2016. Don't know if this is helpful to you, but thought I would pass it on : ). I am 68 and both my siblings are on Prolia after bouts of cancer. I only had one shot of Prolia, but ended up with dental crisis. I had severe reaction Bisophamates early on, so luckily that worked in my favour for good results with Forteo.