Which doctor is best to treat Osteoporosis?

Posted by happy2023 @happy2023, Nov 18 3:14pm

After 2 spinal compression fractures, and a recent DEXA scan confirming Osteoporosis, my question is who is best to treat the Osteo, a rheumatologist or an endocrinologist?

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@lilacs777

@naturegirl5 do you know if endocrinologists who specialize in osteoporosis are typically willing to see patients at risk of osteopenia/osteoporosis? I'm about a year into aromatase inhibitors and concerned b/c my bones are at high risk, but my current oncologist is more of the mindset of lets wait until you are at osteoporosis to do anything. I'd much rather try to get ahead of it and understand what my options are for preserving what I have rather than wait til its gone.

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@lilacs777 I expect that if an endocrinologist has openings and with a referral from another medical provider that they would see someone who is at high risk for osteopenia/osteoporosis. I agree with you that in your place I’d want to be proactive. I hope that your oncologist will refer you.

I know of a few people including my brother who was treated for prostate cancer and his meds contributed to bone loss. For this reason his doctor (not an endocrinologist) ordered a bone density scan and based on those results placed my brother on Tymlos. My understanding is that yes, with some treatments such as aromatase inhibitors that loss in bone density is a risk. So I’d sure push for that referral if I were you.

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@lilacs777

thank you @windyshores , this is very helpful info, I had no idea that some of the bone density drugs had time limits

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@lilacs777 Reclast and other bisphosphonates 3-5 years; Tymlos 2 years; Forteo has been extended but may lose effectiveness by 2 years; Evenity 1 year; Prolia can be longer (differing opinions) but my doctor won't use it due to rebound.

You could do three years of Reclast with the AI. But if I were you, I would wait as the doctor suggested. Early osteoporosis can be treated. But that is based on my experience and rate of loss, as well as regaining density with Tymlos. That is just another patient's opinion so ask both your endo and oncologist!

I might suggest Keith McCormick's book "Great Bones" that is very thorough on both holistic and medication approaches.

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@gently

happy2023,
with two spinal compression, the best doctor is the one who you can see the earliest. Would your primary run tests and prescibe?
I think an endocrinologist is more focused on osteoporosis, but some are primarily invoved with diabetes or other endocrine disorders. If there is a specialist in osteoporosis you are more likely to get the best care.

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I see an Rheumatologist who also specializes in osteoporosis. I have many spinal fractures from lifting a couch. Now on forteo x 1 month and Pray to stop the fx's. Went back and forth about drug prices. Doesn't take long to get into donut hole!!

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@windyshores

@lilacs777 It might be good to keep in mind that Reclast and other bisphosphonates have a recommended limit of 3-5 years.

I was not able to do Reclast during my 5 years of letrozole even though I already had osteoporosis, because my endo was afraid of triggering afib (I already had it every once in awhile, and this risk has been disproven since) and kidney disease.

I did lose bone and did fracture- after treatment was done, mainly because COVID interfered with going on Tymlos in time. I did two years of Tymlos and my bones are now better than before cancer, but that may be an unusual gain.

I think the answer will depend on your DEXA scores. Doctors aren't prescribing for osteopenia anymore and some people aren't doing meds for early/mild osteoporosis. All the meds have time limits and they add up so that those of us who have done a lot of them run out!

The other concern with not doing Reclast or Zometa (both zoledronic acid) is that they are not thought to be beneficial for preventing spread of cancer. That is something to discuss with your oncologist.

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Talk about dexa scans. Would like to kick my Primary Care Dr. In.the teeth for Not ever ordering one and low and behold have multiple spine fractures.

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@jackieo1919

Talk about dexa scans. Would like to kick my Primary Care Dr. In.the teeth for Not ever ordering one and low and behold have multiple spine fractures.

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@jackieo1919 wow, and you had no symptoms or did you have pain but didn't know why?

My first fractures went undetected because fractures don't show up on x-rays for 24-48 hours and my PCP didn't know that. So for 6 months I had pain and he kept saying it was "soft tissue" injury. Finally I went to an orthopedist who did an x-ray and found three thoracic fractures (from a fall).

I hope Forteo helps you! Good chance it will. I stopped fracturing on Tymlos, a similar med. IF cost an issue there is a generic Forteo and also Lilly has a financial assistance program.

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@jackieo1919

Talk about dexa scans. Would like to kick my Primary Care Dr. In.the teeth for Not ever ordering one and low and behold have multiple spine fractures.

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I was treated by an orthopedist for a compression fracture, and he said nothing about getting a DEXA scan, even though I hadn't fallen. My mother always viewed doctors as gods. I have a much more skeptical opinion. 🙂

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@njx58

I was treated by an orthopedist for a compression fracture, and he said nothing about getting a DEXA scan, even though I hadn't fallen. My mother always viewed doctors as gods. I have a much more skeptical opinion. 🙂

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Not only did my PCP not order one (11 yrs)) with him but later had an xray stating osteopenia, still a flag. Then in 2021 compression fx missed on xray and yr later, vitamin d deficiency all adding up to osteoporosis. You do not get good care anymore. Shoving patients to nurses and practioners and they dont look at bloodwork and get an overall picture of someones health. They just send you to a specialist and have no brains now. Have to beg for an MRI and tell them what you want instead of getting good care !! Looking for new PCP now , hopefully one who doesnt shove his patients to nurses. 😵‍💫

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@windyshores

@jackieo1919 wow, and you had no symptoms or did you have pain but didn't know why?

My first fractures went undetected because fractures don't show up on x-rays for 24-48 hours and my PCP didn't know that. So for 6 months I had pain and he kept saying it was "soft tissue" injury. Finally I went to an orthopedist who did an x-ray and found three thoracic fractures (from a fall).

I hope Forteo helps you! Good chance it will. I stopped fracturing on Tymlos, a similar med. IF cost an issue there is a generic Forteo and also Lilly has a financial assistance program.

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windyshores, I lifted patients working in a hospital and hurt my back (2019). Pain is always the symtom and then fell in 2021 and had a T12 fracturemissed on an xray b/c they did lower back xray after I fell walking my dog . It healed but later b/c years gone by with no diagnosis or tests for osteop. I lifted something heavy and started breaking my spine. Yes I hope this med helps!! Forteo x 1 month. Am retired now but find myself in 2 much pain as a I got more fractures everytime I did something so now being super careful and 4 kyphoplasties later. I live in a state of retirement ..they should know better! So sorry you have them too. and Good luck . I applied for the Lilly assistance just 4 days ago and Dr. faxed to them will follow up with them but have not heard of even 1 person actually getting help. Goood luck!

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@jackieo1919

windyshores, I lifted patients working in a hospital and hurt my back (2019). Pain is always the symtom and then fell in 2021 and had a T12 fracturemissed on an xray b/c they did lower back xray after I fell walking my dog . It healed but later b/c years gone by with no diagnosis or tests for osteop. I lifted something heavy and started breaking my spine. Yes I hope this med helps!! Forteo x 1 month. Am retired now but find myself in 2 much pain as a I got more fractures everytime I did something so now being super careful and 4 kyphoplasties later. I live in a state of retirement ..they should know better! So sorry you have them too. and Good luck . I applied for the Lilly assistance just 4 days ago and Dr. faxed to them will follow up with them but have not heard of even 1 person actually getting help. Goood luck!

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@jackieo1919
you might also try RX Advocateshttps://therxadvocates.com/qualify/. They can tell you right away if you qualify by income.

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I went to both, and both just tried to force those dangerous drugs on me. Despite the dangerous side effects, I don't happen to have $4000-7000 per month.

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