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.

@barbiep

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

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I am in my 3rd month of Forteo. I did not have bone density issues (DXA Scan was OK) but due to fracture issues (14+) over my life I was diagnosed with osteoporosis. There were some small side effects when I first started Forteo. A bit of bone pain. With the exception of one time, it is always 1 small location and random. The pain was on about a 3 scale and lasts for a couple hours. If I had to make a choice today I would choose Forteo again. I like it in particular because I don't have to worry about how many clicks to use.

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@windyshores

I had a difficult reaction to Forteo and my doc didn't want me on Prolia or Reclast (long story) so I didn't meds for quite a few years. All I can tell you is that you never know when you will fracture, and when I did, it was three vertebrae at once. Added to 3 traumatic fractures a long time ago, I now have 6. The pain of this is very motivating, believe me. I am finding Tymlos much easier than Forteo, and started at a low dose then moved up slowly. Evenity is another possibility but newer. Side effects from Tymlos, if they occur, tend to fade. I think a -3.2 could be the start of more fragility, but your MD would know.

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Hi @barbiep and welcome, I am on Tymlos but this is my second try. Had to stop for a month due to side effects and then I started back at a low dose and I am working my way back to a full dose. Right now I am over half dose with no side effects. Maybe I will get to finish my two years. Hope you find a med that works for you. KLH

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@barbiep

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

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I recently completed the two year course of Forteo. Had increase in bone density of 12.8% in spine and 5% in hip. I took the shots at night and had no side effects whatsoever. I’m on Reclast now. Did the infusion and all went well with no reaction or side effects.

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@barbiep

Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

Jump to this post

I had a difficult reaction to Forteo and my doc didn't want me on Prolia or Reclast (long story) so I didn't meds for quite a few years. All I can tell you is that you never know when you will fracture, and when I did, it was three vertebrae at once. Added to 3 traumatic fractures a long time ago, I now have 6. The pain of this is very motivating, believe me. I am finding Tymlos much easier than Forteo, and started at a low dose then moved up slowly. Evenity is another possibility but newer. Side effects from Tymlos, if they occur, tend to fade. I think a -3.2 could be the start of more fragility, but your MD would know.

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@barbiep
Studies have shown that vitamin K2 along with vitamin D3 help in the absorption of calcium. The K2 helps the calcium get into the bone and not calcify in the arteries and other tissues. Without K2 future cardiovascular episodes may occur.
It also improved bone density tests.
K2 & D are best absorbed with meals that contains some fat.
Take care,
Jake

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@concernedmtnmom

Thanks, @jaleen . My instinct is to avoid these scary meds and work on calcium from food and weight-bearing exercise, weight training, etc. Altho I do all those and it didn't help, evidently. I have osteopenia in my family history and my doc says it's genetic. I'm 53 and mad as hell. Hope my doc has better solutions.

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Hello, everyone, I'm also new to this group. I had taken Evista for osteopenia from 2008-2012, during which time several DEXA scans showed I had some improvement. My hip was fine then, but spine -2.1. I was 55 in 2012 when Evista was stopped. My GYN never again mentioned osteopenia, and didn't order a follow-up DEXA till last month - a 9 year lapse! It was never on my radar so I didn't research anything. I was mindful of calcium but not the fact that it should be well distributed throughout the day - thus I was overloading in AM and not enough in evening. Hip now -1.1 and spine -3.2. I had been very active but now fearful of skiing, biking and even less demanding activities. I'm now distributing my calcium properly, continuing Vit. D as always, and fast walking with hills close to 4 miles a day. Am researching the best/safest strength and resistance exercises as well, and plan to start ASAP. My GYN is referring me to an endocrinologist and suggesting Forteo or Tymlos. What I read about Forteo on other sites terrified me. On this site, the comments regarding Tymlos don't seem too bad, but I'm pretty reluctant. May just continue lifestyle/exercise and dietary approach and get a second opinion. Would be interested in any/all suggestions / recommendations! I'm glad I found this site!! Thank-you!

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@flmargie

what are you all clicking? New to the site and am osteoporotic. Have history of jaw fracture so in eligible for shots.

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@flmargie, hi welcome if there is anything we can do to help with advice or explain anything. Just send a message. @windyshores or @kilh. Both of us are on Tymlos and had to stop for side effects but after off a few weeks, we started back on but at a small dosage. The full dosage is 8 clicks. I am only up to 3 clicks and the other is up to 6+ clicks. We are trying to get back to full dosage but if 1/2 dosage is all we get then we will be happy.
But the hare is beating the tortoise. But I am moving slower. Hope this helps. Stay safe and healthly. KLH

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@windyshores

I am meeting with my endocrinologist later this month. He gave me the choice of trying Tymlos again (after being hospitalized with a side effect) or Evenity. I wanted to save Evenity. But if it is more powerful and fewer side effects, I would consider. I want to know if I can do Tymlos AND then Evenity and get more bone growth, or if I would get the same bone growth with Evenity alone. Tymlos seems to help the spine but not the hip. Evenity is both anabolic and antiresorptive, but it is also very new.

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I don’t know anything about Tymlos but I’ll look it up. I took beniva for 4 years and it did not help at all. I will be getting a bone scan in probably 3 months and I am keeping my fingers crossed that I will see a big improvement with Evinity. It all is difficult and I have scoliosis which I think even makes my bones thinner. The best of luck. Let me know what your doctor says.

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@jasnat

So I’ve been taking Evinity for 10 months. I have absolutely NO side effects. I get 2 shots each month at northwestern hospital. I get a little sore and burn when I get the shots but worth it.

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I am meeting with my endocrinologist later this month. He gave me the choice of trying Tymlos again (after being hospitalized with a side effect) or Evenity. I wanted to save Evenity. But if it is more powerful and fewer side effects, I would consider. I want to know if I can do Tymlos AND then Evenity and get more bone growth, or if I would get the same bone growth with Evenity alone. Tymlos seems to help the spine but not the hip. Evenity is both anabolic and antiresorptive, but it is also very new.

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@windyshores

I think I fractured a vertebra last night ducking under a barrier. This is serious business. If I did, I have a total of 6 spinal fractures. Going to try to stick with 6 clicks and continue moving up. Have to ask doc if that is enough or if I should switch to Evenity.

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So I’ve been taking Evinity for 10 months. I have absolutely NO side effects. I get 2 shots each month at northwestern hospital. I get a little sore and burn when I get the shots but worth it.

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