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.

@mj20

Thank you so much, Chris. Maybe I should have done the Forteo, as she had originally recommended. The decision is way to big for me! You do make good sense with the large dosage at one time. . Did you try having an infusion of Reclast? I'm so upset with all of this.

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@mj20 like Chris I am sensitive to meds and I am small. My endocrinologist wants me in the hospital office if I ever do Reclast, and he wants to try 1/4 dose first. The thing is, Reclast hangs around in our bodies for a long time, so if there are side effects, you have them for awhile.

I tried Forteo and could not tolerate it. I saw an immunologist to try to get on it, years ago, before Tymlos was available.

I don't know why your doc suggested Forteo instead of Tymlos. They work in a similar, if slightly different, fashion through the parathyroid. Both build bone, and quality bone, because they don't affect resorption the way Reclast and Prolia do.

Tymlos comes in a pen with 8 clicks. As I have written before, I reacted to the full dose, regrouped, and started with only two clicks, then moved up to 7 for the past year. I feel a lot stronger.

Tymlos gives a strong foundation of quality bone, I have been told, before maintaining with Reclast, which stops resorption but does not have the same active bone-building ability.

I know it feels overwhelming. Maybe you could see a second doctor. To simplify, there are anti-resorptives (Reclast and other bisphosphonates, and Prolia), bone- builders (Tymlos and Forteo), and Evenity, which is both. I am saving Evenity for the future.

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@artscaping

Good evening @mj20 I haven't had a chance to say "Hello". I am the mentor working with this new group, Osteoporosis & Bone Health. I am so glad we have our own group and our own space now. And thanks to you also @windyshores. You truly are a kind and helpful person with lots of experience.

I think I too would run the other way if I had to have 12 injections a day for 19 days. However, I did two years of Tymlos without a whimper. Why? My body can't handle large doses that are supposed to last a month or 6 months or even a year. When I calculate the half-life of the dosage, I realize why my tolerance difficulties come in the first half. I am simply way overdosed. So daily injections (gentle, minimal ones) are perfect for me.

Good luck with your decision outcome. It is great that as we live longer, we now have medications that help our bones stay strong. Please drop in and share how you are doing. That is the way we can all help each other.

May you be safe, protected, and free from inner and outer harm.
Chris

Jump to this post

Thank you so much, Chris. Maybe I should have done the Forteo, as she had originally recommended. The decision is way to big for me! You do make good sense with the large dosage at one time. . Did you try having an infusion of Reclast? I'm so upset with all of this.

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@mj20

Thanks, Windy Shores. Its soooo hard to know what to do, and it's making me crazy. I've been trying to make this decision for months. My doctor thought it was a good alternative plan, so I decided to go with it. It's one infusion once a year for two years. I have stomach issues and continuous lung issues. For the past year , I've been through three bronchoscopies, 19 days of 12 infusion syringes a day for lung infections, and the list goes on and on
, so I just tried to make the right decision, that would be the easiest on me. Sorry if I'm venting, but it's all too much. You know how it feels when you get to that place? I'm sorry to hear about your fractures. They sound terrible. Well, thanks for your reply. You are really a kind person.

Jump to this post

Good evening @mj20 I haven't had a chance to say "Hello". I am the mentor working with this new group, Osteoporosis & Bone Health. I am so glad we have our own group and our own space now. And thanks to you also @windyshores. You truly are a kind and helpful person with lots of experience.

I think I too would run the other way if I had to have 12 injections a day for 19 days. However, I did two years of Tymlos without a whimper. Why? My body can't handle large doses that are supposed to last a month or 6 months or even a year. When I calculate the half-life of the dosage, I realize why my tolerance difficulties come in the first half. I am simply way overdosed. So daily injections (gentle, minimal ones) are perfect for me.

Good luck with your decision outcome. It is great that as we live longer, we now have medications that help our bones stay strong. Please drop in and share how you are doing. That is the way we can all help each other.

May you be safe, protected, and free from inner and outer harm.
Chris

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@windyshores

IF your bone density is bad, would you consider Tymlos? I am much more leery of side effects with Reclast. The pen needles for Tymlos are tiny and have adjustable doses so you can start low and move up.

I have heard that using Reclast first may affect the effectiveness of the bone-builders like Tymlos, Forteo or Evenity and it has been suggested to me to do Reclast after Tymlos.

I fractured my spine in several places. Tymlos and Forteo build quality bone. I would take a small needle every morning forever if I could have avoided these fractures, which are permanent, painful and disabling.

Respect to you in your decision-making but wanted to share my perspective.

Jump to this post

Thanks, Windy Shores. Its soooo hard to know what to do, and it's making me crazy. I've been trying to make this decision for months. My doctor thought it was a good alternative plan, so I decided to go with it. It's one infusion once a year for two years. I have stomach issues and continuous lung issues. For the past year , I've been through three bronchoscopies, 19 days of 12 infusion syringes a day for lung infections, and the list goes on and on
, so I just tried to make the right decision, that would be the easiest on me. Sorry if I'm venting, but it's all too much. You know how it feels when you get to that place? I'm sorry to hear about your fractures. They sound terrible. Well, thanks for your reply. You are really a kind person.

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@mj20

Hi everyone,
Thanks for your responses on my starting Forteo. I discussed my concerns about the shots everyday with my doctor, and we will be starting Reclast instead for one year. It's the infusion. I had stomach shots for something else in the hospital, and it was extremely painful for me. I am 69 and my bone density is bad, but she said it's ok to wait. I'll also be starting to walk a lot more and take calcium. Anyone else on Reclast?

Jump to this post

IF your bone density is bad, would you consider Tymlos? I am much more leery of side effects with Reclast. The pen needles for Tymlos are tiny and have adjustable doses so you can start low and move up.

I have heard that using Reclast first may affect the effectiveness of the bone-builders like Tymlos, Forteo or Evenity and it has been suggested to me to do Reclast after Tymlos.

I fractured my spine in several places. Tymlos and Forteo build quality bone. I would take a small needle every morning forever if I could have avoided these fractures, which are permanent, painful and disabling.

Respect to you in your decision-making but wanted to share my perspective.

REPLY

Hi everyone,
Thanks for your responses on my starting Forteo. I discussed my concerns about the shots everyday with my doctor, and we will be starting Reclast instead for one year. It's the infusion. I had stomach shots for something else in the hospital, and it was extremely painful for me. I am 69 and my bone density is bad, but she said it's ok to wait. I'll also be starting to walk a lot more and take calcium. Anyone else on Reclast?

REPLY
@callalloo

If the issue with Fosamax is that taking an oral bisphosphonate can exacerbate GI tract issues (which I have also, so totally understand), there are injectable or infusion bisphosphonates as well.
Can you talk with your physician about these options so you can formulate a reassuring game plan?

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I'll definitely ask the endocrinologist about that. She didn't mention the IV/IM bisphosphonate options when she was pressing me to take them, only moved on to Forteo. I'm a health care provider (retired optometrist, worked in a surgical clinic for many years) so I'm not too shabby at finding information, usually, but researching options in postmenopausal osteoporosis, and the blood work associated with assessing it, is not straightforward at all.
Thank you for the suggestion!

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@nancyoinnc

I am 65, multiple fractures, and worst Z score is 3.5 or so. I've done ALL the things(weight bearing excercise, no smoking, no alcohol x 3 years, good diet all my life), but have Hashimotos and presumed celiac. Pervasive family history of gastroesphageal cancer and upper GI problems, and I have non-specific gastritis WITHOUT reflux, although I don't take NSAIDS or other stomach irritants. I have been dairy-free on doctors orders x 5 years, gluten free on doctors orders x 8-9 years.
The new endocrinologist wants me on Forteo or Tymlos; I'm okay with using those drugs but not subsequently maintaining with Fosamax or similar because of the gastro problems. I also have family history of blood clots, and personal history of intolerance to hormonal interventions. HELP!

Jump to this post

If the issue with Fosamax is that taking an oral bisphosphonate can exacerbate GI tract issues (which I have also, so totally understand), there are injectable or infusion bisphosphonates as well.
Can you talk with your physician about these options so you can formulate a reassuring game plan?

REPLY

I am 65, multiple fractures, and worst Z score is 3.5 or so. I've done ALL the things(weight bearing excercise, no smoking, no alcohol x 3 years, good diet all my life), but have Hashimotos and presumed celiac. Pervasive family history of gastroesphageal cancer and upper GI problems, and I have non-specific gastritis WITHOUT reflux, although I don't take NSAIDS or other stomach irritants. I have been dairy-free on doctors orders x 5 years, gluten free on doctors orders x 8-9 years.
The new endocrinologist wants me on Forteo or Tymlos; I'm okay with using those drugs but not subsequently maintaining with Fosamax or similar because of the gastro problems. I also have family history of blood clots, and personal history of intolerance to hormonal interventions. HELP!

REPLY
@jmanj

I started using Collagen about 9 months ago. After reading a lot about it, I figured it can’t hurt. I don’t know how to “prove” it helps with Osteoporosis, but my hair and nails are much stronger!

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Stronger hair and nails are a good result in themselves. And if bones need it as I've read maybe it's getting to them as well.

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