Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

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

@catluvr999

Hi. Thanks. I called a pharmacist, but she didn't seem to even absorb my question. I asked "Is there a medication that just builds bone, without *also* preventing resorption? I am thinking I want a med that's like what Restasis does for tears, producing tears, except for bone....and not have the anti-resorption aspect. (The anti-resorption, I am afraid, is what might cause the extreme fractures -- "atypical femoral fractures" described starting at spot 10:35 in the Youtube video: https://www.youtube.com/watch?v=1MripZTWMBQ). The pharmacist replied: "I don't think there's a medication that make your bones reproduce to the point where ... <she didn't finish her thought>... but there are medications that can make your bones healthy, and that's why they ask you to take calcium and vitamin D." Her reply was just a rambling mess; seemed medications wasn't her wheelhouse.

PS -- Seems my first link in my main post above was right, and I haven't been able to locate the right link, sorry.

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There are a handful of choices with respect to drugs for osteoporosis and, regrettably, none of them perfect or free of thought-provoking side effects and potential side effects. If there is one that does "make bones healthy" as the pharmacist mentioned, I've not heard of it. Unless she was referring to the few drugs that seem to trigger the growth of new bone?

I've wondered too why and how bisphosphonates can induce those longitudinal fractures of the femur (or osteonecrosis in rare cases for that matter). I suspect as you do that there's something else happening when old dead bone cells aren't being slouched off?

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@catluvr999

Hi. Thanks. I called a pharmacist, but she didn't seem to even absorb my question. I asked "Is there a medication that just builds bone, without *also* preventing resorption? I am thinking I want a med that's like what Restasis does for tears, producing tears, except for bone....and not have the anti-resorption aspect. (The anti-resorption, I am afraid, is what might cause the extreme fractures -- "atypical femoral fractures" described starting at spot 10:35 in the Youtube video: https://www.youtube.com/watch?v=1MripZTWMBQ). The pharmacist replied: "I don't think there's a medication that make your bones reproduce to the point where ... <she didn't finish her thought>... but there are medications that can make your bones healthy, and that's why they ask you to take calcium and vitamin D." Her reply was just a rambling mess; seemed medications wasn't her wheelhouse.

PS -- Seems my first link in my main post above was right, and I haven't been able to locate the right link, sorry.

Jump to this post

Here's a quick overview from Harvard Health on the different drugs currently used to treat osteoporosis. The side
effects and risks vary widely so this is just a survey of what's currently on offer. I've read studies looking at which alleles on which genes seem to be most prognostic of osteoporosis so hope that genetic testing might also offer some guidance in the near future.

https://www.health.harvard.edu/womens-health/osteoporosis-drugs-which-one-is-right-for-you
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This overview gives more and better information. Though I think most people who take calcium and vitamin D (hopefully D3) also take vitamin K now, which wasn't mentioned.

Osteoporosis: A Review of Treatment Options

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5768298/
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@catluvr999

Hi. Thanks. I called a pharmacist, but she didn't seem to even absorb my question. I asked "Is there a medication that just builds bone, without *also* preventing resorption? I am thinking I want a med that's like what Restasis does for tears, producing tears, except for bone....and not have the anti-resorption aspect. (The anti-resorption, I am afraid, is what might cause the extreme fractures -- "atypical femoral fractures" described starting at spot 10:35 in the Youtube video: https://www.youtube.com/watch?v=1MripZTWMBQ). The pharmacist replied: "I don't think there's a medication that make your bones reproduce to the point where ... <she didn't finish her thought>... but there are medications that can make your bones healthy, and that's why they ask you to take calcium and vitamin D." Her reply was just a rambling mess; seemed medications wasn't her wheelhouse.

PS -- Seems my first link in my main post above was right, and I haven't been able to locate the right link, sorry.

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@catluvr999 Tymlos and Forteo do not affect resorption the way the other drugs do, and works with the parathyroid. Do you have a doctor?

They may have some minimal impact:

"Tymlos acts like PTH, binding to one of the PTH receptors in your bone. The type of receptor it binds to and the way in which it binds promotes bone formation and minimizes the other function of PTH, namely bone resorption, and calcium release."

Anabolics like Tymlos and Forteo work mainly by building bone, whereas biphosphonates and Prolia work by affecting resorption. Tymlos and Forteo do not cause the dental/ONJ issues or atypical fractures that may happen (if rarely) with the other drugs.

Evenity does both and does carry the risk of ONJ or atypical fractures but is only used for one year.

It might reassure you that anabolics like Tymlos and Forteo may be used to heal the atypical fractures caused by biphosphonates (or PRolia).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4691592/

Background
"Bisphosphonates (BPs) are the most commonly used anti-osteoporotic drugs, which have been proven to reduce the risk of osteoporotic fractures. However, use of BPs, particularly for long periods of time, is associated with an increased risk of atypical femoral fracture (AFF). Healing of BP-associated AFF is usually delayed because of suppressed bone turnover. Teriparatide (TPTD), a recombinant form of parathyroid hormone (PTH), enhances bone healing in patients with delayed healing or non-union."

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@toni7

Thank you for your reply. You have given me a little hope that perhaps I should try Tymlos injections. I have an upcoming appointment with my Endocrinologist next week and will discuss this with him. I'm just wondering, if you are experiencing any side effects from Tymlos. If you so ... what are you feeling and how you are treating them. Also, the injections should only be taken for 2 years. Does this means the bones are stronger and no longer need treatment?

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Good afternoon @toni7. Your concerns are legitimate. And the basket of options can be extremely confusing. There are three rather new medications that require injections and have been developed to build bone. The one with the longest medical history is Forteo. The next one is Tymlos. Both are taken for two years. The newest one is Evenity which not only builds bones but also protects the bone from reabsorption during the one year schedule.

Because of uncomfortable side effects with bisphosphonates, I chose two years of Tymlos. My scores for hips returned to the osteopenia level and the other scores remained stationary which means they held their own. I had no side effects except for the first few days. They were unspectacular.....and disappeared in a couple of weeks.

Then came the hard part. What next? Moving to Evenity would mean a rapid building of more bone and a less active effort at protecting as the research begins to show. Since my unfortunate reaction with Boniva, it appeared that I only had one choice and that would be Prolia.

I did finish a year on Prolia with concerning side effects and unimpressive Dexa scores. I secured periodontist exam reports indicating that so far there was no damage to my jaw and that my teeth would probably not need any surgery or implant treatments.

Nothing felt right to me so I asked for a consult in Endocrinology at Mayo Clinic. Here is what I discovered. At the age of 77, when I was told that I needed to begin the osteoporosis medications, that recommendation was way too aggressive. I did not need any bone-building or bone protection at that point based on my scores. There seems to be some anxiety among endocrinologists and other clinicians to make sure everyone gets going on something.

So......now I was in a "pickle". Evenity was too new without enough research for me and only possible for a year. Again....then what? The Mayo endocrinologist went back to look at the once-a-month biphosphonate dosage which resulted in side effects. What if you took the bone-protecting biphosphonate, alendronate, weekly instead of monthly? The dosage of one infusion a month was just too heavy for me.

So.....four weeks ago I began to take one tablet, not an injection, every Monday morning. And as you might be beginning to realize......it is working. No side effects, no joint pain, no jaw or teeth or gum pain. No nausea or injection soreness.

So just backing off from the more infrequent heavy doses is the answer for me. It might also be worth discussing with your clinician. Questions??????

May you be safe, protected, and free from inner and outer harm.
And thanks Mayo Clinic.

Chris

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@callalloo

Here's a quick overview from Harvard Health on the different drugs currently used to treat osteoporosis. The side
effects and risks vary widely so this is just a survey of what's currently on offer. I've read studies looking at which alleles on which genes seem to be most prognostic of osteoporosis so hope that genetic testing might also offer some guidance in the near future.

https://www.health.harvard.edu/womens-health/osteoporosis-drugs-which-one-is-right-for-you

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Thanks. Their table at the bottom of the article got me excited until I saw the super poorly done Dosing column that gives a mixed bag of mechanism of action/purpose and delivery system. Sheesh!

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@catluvr999

Thanks. Their table at the bottom of the article got me excited until I saw the super poorly done Dosing column that gives a mixed bag of mechanism of action/purpose and delivery system. Sheesh!

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The other article is more thorough. Mayo Clinic has articles as well. There's no shortage of info, but there is, in my mind, a shortage of drugs that can do what we need most....help keep healthy, renewing, resilient bones...with no downside risk. The science isn't quite there yet.

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@windyshores

@catluvr999 Tymlos and Forteo do not affect resorption the way the other drugs do, and works with the parathyroid. Do you have a doctor?

They may have some minimal impact:

"Tymlos acts like PTH, binding to one of the PTH receptors in your bone. The type of receptor it binds to and the way in which it binds promotes bone formation and minimizes the other function of PTH, namely bone resorption, and calcium release."

Anabolics like Tymlos and Forteo work mainly by building bone, whereas biphosphonates and Prolia work by affecting resorption. Tymlos and Forteo do not cause the dental/ONJ issues or atypical fractures that may happen (if rarely) with the other drugs.

Evenity does both and does carry the risk of ONJ or atypical fractures but is only used for one year.

It might reassure you that anabolics like Tymlos and Forteo may be used to heal the atypical fractures caused by biphosphonates (or PRolia).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4691592/

Background
"Bisphosphonates (BPs) are the most commonly used anti-osteoporotic drugs, which have been proven to reduce the risk of osteoporotic fractures. However, use of BPs, particularly for long periods of time, is associated with an increased risk of atypical femoral fracture (AFF). Healing of BP-associated AFF is usually delayed because of suppressed bone turnover. Teriparatide (TPTD), a recombinant form of parathyroid hormone (PTH), enhances bone healing in patients with delayed healing or non-union."

Jump to this post

Thanks. Yes I have a primary doctor....and will finally get an Endocrinologist appt...Dr Gina Woods.... in October, who I'm hopeful won't jump to a fosamax/Alendronate recommendation like my doctor did. I only got in about 10 of my 20+ questions w my doctor during our virtual appt....during which I pressed for investigating possible secondary causes of my -2.8 hip t score, which she obliged in spite of saying my Z scores would be what indicates a possible secondary cause to blame and they don't.

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@callalloo

The other article is more thorough. Mayo Clinic has articles as well. There's no shortage of info, but there is, in my mind, a shortage of drugs that can do what we need most....help keep healthy, renewing, resilient bones...with no downside risk. The science isn't quite there yet.

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Thanks. There's no shortage of info for sure. I understand that it's not possible to completely boil down a lot of this info into an easily digestible comparison table, but I truly think it's possible to come close. I did it as a technical writer translating complex system relationships into a simplified chronological flow diagram....and if I can do it, anyone can.....well, almost anyone.😆

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@callalloo

There are a handful of choices with respect to drugs for osteoporosis and, regrettably, none of them perfect or free of thought-provoking side effects and potential side effects. If there is one that does "make bones healthy" as the pharmacist mentioned, I've not heard of it. Unless she was referring to the few drugs that seem to trigger the growth of new bone?

I've wondered too why and how bisphosphonates can induce those longitudinal fractures of the femur (or osteonecrosis in rare cases for that matter). I suspect as you do that there's something else happening when old dead bone cells aren't being slouched off?

Jump to this post

I think that by "medication that can make your bones healthy" she meant the vitamins she then listed....even though literally that's not what her specific words meant ("there are medications....and that's why you should take vitamins...."). Yep, a useless discussion with a professional. And I always have such hope.🥴

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