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Tymlos or Forteo to treat osteoporosis with underlying adult HPP
Anyone have experience taking Forteo or Tymlos for osteoporosis with underlying Adult HPP?
I am in a unique situation. I have adult HPP (confirmed with genetic testing and labs, etc.) but thankfully, I do not yet have any outward symptoms of HPP( Hypophosphotasia). No broken bones, etc. but I do however have confirmed osteoporosis.
Patients with confirmed HPP cannot take any biphosphonates. So, I'm reading I'm limited to Tymlos, Forteo and maybe Evenity.
Years ago, I wish I could have taken hormone replacement therapy but couldn't because of family history risk (since then no family risk.)
Those with active HPP with symptoms usually take enzyme replacement therapy to replace the low alkaphosphotase, but without active symptoms, some doctors recommend Tymlos or Forteo.
Wondering if anyone has HPP and is taking Tymlos or Forteo? What kinds of side effects have you had? And what did you take after 2 years of treatment to lock in the results?
Waiting for a specialist appointment.
Thank you.
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My endo said that alendronate is required to lock in the gains after Forteo. I'm not sure if that was just do to my specific health issues or if it's the same for everyone. Otherwise, I like doing Forteo and recommend it.
Hi
Have you had any side effects from forteo? I just had 2 more fractures.Previously i had one. I have been on reclast for the past 3 yrs. My endo now is wanting me to start forteo.
I had just a little irritation for the first week or so of Forteo and then no other side effects.
My bone density was normal, but I have had over a dozen fractures and my osteoporosis diagnosis was based off the number of fractures. I most recently (3 months ago) fractured a toe (fracture 15 or 16). My endo says toe fractures are common and is not because of osteoporosis. I just had a dexa scan and my numbers are good.
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1 ReactionYour Dexa scan was ok, then no need to worry too much but read relaxed life style.
Had a left knee replacement. Two month evaluation, I was fine. During exercises I pulled a groin muscle on my right side and have severe pain in my groin, buttock and around my hip. I do have some osteoarthritis in my right hip but was ok until I pulled the groin muscle on. Now in intense pain in those areas.
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1 Reaction@junonia13, I just learned that I’m in the same boat with you. Just had the genetic testing confirming HPP.
Have you learned anything more since posting this? I was close to starting in Tymlos but now don’t know what would follow it to lock in gains. Waiting to get doc appt to discuss.
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1 ReactionI’ve had great success with Tymlos! It’s very expensive but there are programs and ways to get help with the cost! I have severe osteoporosis and have gained 14% density in my spine since starting Tymlos about 16 months ago!!
@shirleyhibb26
I took my last dose of TYMLOS yesterday!! I did the whole two years with no issues. The very first injection was uncomfortable for about 15-20 minutes, in the doctors office. Had I known to prepare for that possibility, I would have taken TYLENOL prior to the injection. It never happened again and it was smooth sailing right through until yesterday.
My numbers in the first year were much improved. I went from osteoporosis and six spinal fractures to osteopina. I will have another DEXA SCAN in September, 2026. On April 16, 2026 I will have my first annual infusion of Reclast. It has been suggested to take TYLENOL before the infusion in order to avoid flu like symptoms, drink plenty of water and do not drive myself the first time.
My doctor, (I go to a bone specialist), said Reclast is my best option because it will freeze the gains from TYMLOS better than any other drug currently available. She feels that I may only have to do the infusion every two to three years, if I follow a healthy diet and exercise plan. I do get a lot of vitamin D, Calcium and I'm working on upping my protein intake. I walk five miles every day.
I will soon have back surgery at the end of April or early May. My CT scan shows good bones. I will be getting an MRI soon. My blood work looks good. So....that's where things are now. I'm hoping for no side effects from the Reclast, a successful surgery and being able to do all the things I used to do.
I'm taking all the positive vibes and focusing on them!!!! Everyone is different, our bodies react differently and right now there is no once and done miracle drug for osteoporosis, but look at how far we have come!! Our grandmothers were not as fortunate....let's be positive and grateful.
I will keep you posted with updates after the first Reclast infusion and my back surgery.
I do have to say how much I appreciate this wonderful forum and how helpful it has been and will continue to be. I feel like I have 100 friends here who all truly care about each others well being and show concern and support for each other.
Thank you all so much.
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1 Reaction@gowalking that’s so wonderful!! You have such a great attitude too!! That really makes challenges a little easier !! Good luck with the reclast and your upcoming back surgery! Hoping everything goes really well for you!!
@gowalking when you say your doctor is a bone specialist, could you please advise what specialty that might be? Orthopedic? Or like many others with osteoporosis, the doctor is an endo or rheumatologist...or????