Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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

Hi there, the payment doctors are receiving for prescribing/promoting a certain drug is nowadays called Industrial Payment. Please google it.
Regarding drugs for osteoporosis they all have the same type of side effects. After having chemotherapy treatment 2012 for ovarian cancer I was in that awful decision situation drugs or what? Read everything that was written. Then a doctor from Kamo Environmental Clinic (in New Zealand 🇳🇿 where I live) suggested STRONTIUM a mineral for bone health. Started 2014 had a Dexa scan 2016 and 2018 where the Radiologist writes: There has been a statistically significant (ie +/- 5%) increase of 7 % compared with the previous study.
In 2016 I had just started taking Strontium and I can assure you I had and still have no side effects to report.
Strontium Renelate is available in Europe. The maker, a French drug company couldn’t put Strontium in a jar and make money so they added Renelate and hence received funding from the French government to do ‘research’.
Say no more, but read about it. How it for some time was withdrawn from the market because of problems with the Renelate…
Please trust people saying it’s safe taking the natural Strontium. I’m taking Life Extension Strontium Caps.
750 mg (3capsules) every night on an empty stomach.
There are other brands just as good I’m sure.
Be mentally and bone strong with STRONTIUM.

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@virgo48

Hi there, the payment doctors are receiving for prescribing/promoting a certain drug is nowadays called Industrial Payment. Please google it.
Regarding drugs for osteoporosis they all have the same type of side effects. After having chemotherapy treatment 2012 for ovarian cancer I was in that awful decision situation drugs or what? Read everything that was written. Then a doctor from Kamo Environmental Clinic (in New Zealand 🇳🇿 where I live) suggested STRONTIUM a mineral for bone health. Started 2014 had a Dexa scan 2016 and 2018 where the Radiologist writes: There has been a statistically significant (ie +/- 5%) increase of 7 % compared with the previous study.
In 2016 I had just started taking Strontium and I can assure you I had and still have no side effects to report.
Strontium Renelate is available in Europe. The maker, a French drug company couldn’t put Strontium in a jar and make money so they added Renelate and hence received funding from the French government to do ‘research’.
Say no more, but read about it. How it for some time was withdrawn from the market because of problems with the Renelate…
Please trust people saying it’s safe taking the natural Strontium. I’m taking Life Extension Strontium Caps.
750 mg (3capsules) every night on an empty stomach.
There are other brands just as good I’m sure.
Be mentally and bone strong with STRONTIUM.

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@virgo48 the reason you had improvement on your DEXA is very possibly because strontium is denser than calcium and replaces it in the bones, so the bones read as denser than prior to the strontium.

If strontium has been reapproved for use in Europe, or if it has been proven that it was the ranelate, not the strontium, that was causing the cardiovascular/clot risks, please let us know with links.

I took 680mg/day for a few months until the safety info came out. I am now on Tymlos after fracturing, and sooo much better. I started at a low dose and am still on 7 clicks of the pen, not the full dose of 8. I am so grateful for it. It improves quality of bone as well as density.

One other thing: I have read but cannot cite, that strontium may work too slowly (if it works) for those of us with severe bone loss. Evenity is fastest but it is new and it affects resorption, which is not an issue with Forteo or Tymlos.

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Good morning windyshores,
I’m quite aware of the fact strontium is denser but even if you take away 10% or more it’s a significant improvement.
Having another Dexa scan December 5. My doctor suggests Aclasta intravenous injections if my scan doesn’t show more improvements.
And it was the Renelate that caused heart palpitations so the French drug company withdrew the Strontium/Renelate for some years but is now, after
warning labels on the jars, available in Europe. It’s subsided of course for people that cannot take pharmaceutical drugs.
All good, some of us might have different views but we all do what we think is the right thing to do for oneself.
Have a nice day.

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@windyshores

I don't know your scores but I can tell you that "big pharma drugs" can work very effectively and prevent the pain and disability I have experienced with fractures.
I was unable to tolerate meds- despite many efforts- and finally landed on Tymlos, starting at a low dose and moving up. This was AFTER spinal fractures unfortunately, three of which happened from one unwise movement. I FELT strong (was doing sword tai chi) but I was in danger for years. Tymlos is helping me a lot. Forteo and Evenity are other options.

I am not sure what "natural supplements" you are going to use, but strontium throws off the DEXA scan results by making things look better than they are. In Europe people no longer take strontium ranelate due to cardiovascular risks.

I take calcium, D3 with K, magnesium and B complex including folate. Walking and tai chi. But if your scores are bad, I would strongly suggest considering meds. Don't start with Prolia or biphosphonate if you can do a bone-builder like Tymlos, Forteo or Evenity, all of which better if you haven't taken anything else.

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Thank you for your reply...I did break my hip ..but it healed ..so that is why I think my bones are thin but have some strength .We have to consider the treatment we take ..how do you know the tylmos is working...dexa scan. I wish you the best

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@windyshores

I don't know your scores but I can tell you that "big pharma drugs" can work very effectively and prevent the pain and disability I have experienced with fractures.
I was unable to tolerate meds- despite many efforts- and finally landed on Tymlos, starting at a low dose and moving up. This was AFTER spinal fractures unfortunately, three of which happened from one unwise movement. I FELT strong (was doing sword tai chi) but I was in danger for years. Tymlos is helping me a lot. Forteo and Evenity are other options.

I am not sure what "natural supplements" you are going to use, but strontium throws off the DEXA scan results by making things look better than they are. In Europe people no longer take strontium ranelate due to cardiovascular risks.

I take calcium, D3 with K, magnesium and B complex including folate. Walking and tai chi. But if your scores are bad, I would strongly suggest considering meds. Don't start with Prolia or biphosphonate if you can do a bone-builder like Tymlos, Forteo or Evenity, all of which better if you haven't taken anything else.

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I’m in Canada and some of these drugs I see here are not available or perhaps called by a different name. I have osteo, pretty healthy but am very nervous of the side effects from the two drugs my Dr has recommended which are Alendronate and Prolia. Looking at alternatives. I am 72. Going to see a naturopath before taking any meds.

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How do you know strontium throws off Dexa scans?

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It is very well known that strontium throws off DEXA scans. I have had osteoporosis for 15 years and have been on many forums, workshops, lectures, and FB groups.

I also have 7 spinal fractures and come on here to help others avoid the pain and disability that result. Three were from a traumatic fall in 2006. But after the other non-traumatic fractures in 2021, I was literally crawling on the floor. I could not lift a glass of water, do the dishes, laundry, even wash my face. I was accustomed to walking 5 miles/day and doing sword tai chi and could not make it around the block.

Someone asked how I know the Tymlos is working. After more than a year, I just walked 21 miles in two days with my daughter. I am relatively pain free unless I make a mistake and though there are still limitations in terms of lifting, I am much much stronger. My kids remark on this when I visit. They no longer worry.

I have not had a DEXA scan yet. I will have that in March.

I did not purposefully avoid meds for 14 years. I tried bisphosphonates (oral) but while on cancer meds that worsened bones, my docs did not want to do Reclast (at the time he thought it might aggravate my afib) and my doc does not want Prolia for me (can't stop it w/out Reclast afterward). I tried Forteo years ago and even saw an immunologist to try to get on it.

Tymlos at full dose caused a lot of problems. I am grateful to have started it again at two out of 8 clicks. For almost a year now I have been at 7 out of 8 clicks. Side effects go away after a month or so.

I am glad to hear that strontium is back on the market. In the US, Doctor's Best stopped making it. I would appreciate seeing studies that show that it was the ranelate that was causing the risks. I do think it is too slow and gentle for those of us with severe osteoporosis but I would consider it as a follow up to Tymlos (versus Reclast) for maintenance, if it is truly safe.

@travelgal50 be aware that stopping Prolia can bring vertebral fractures pretty quickly for some people, according to what I have learned over the years, and you have to either stay on Prolia or follow with another drug to avoid an abrupt drop in bone density. Alendronate is a bisphosphonate.

Both Prolia and alendronate may interfere with effectiveness of the stronger bone-builders like Forteo, Tymlos and Evenity. The problem is that insurance wants us to fail the "front line" bisphosphonates or Prolia first. If you have fractures or a serious DEXA result, perhaps you could try a bone-builder first.

Forums like Inspire through the National Osteoporosis Foundation have experts like dexaguru, a doc in the field, who can give more info on the false readings that result from strontium. I think it is fine to use it if safe, but it is misleading to post improvements without a caveat, that's all.

REPLY
@windyshores

It is very well known that strontium throws off DEXA scans. I have had osteoporosis for 15 years and have been on many forums, workshops, lectures, and FB groups.

I also have 7 spinal fractures and come on here to help others avoid the pain and disability that result. Three were from a traumatic fall in 2006. But after the other non-traumatic fractures in 2021, I was literally crawling on the floor. I could not lift a glass of water, do the dishes, laundry, even wash my face. I was accustomed to walking 5 miles/day and doing sword tai chi and could not make it around the block.

Someone asked how I know the Tymlos is working. After more than a year, I just walked 21 miles in two days with my daughter. I am relatively pain free unless I make a mistake and though there are still limitations in terms of lifting, I am much much stronger. My kids remark on this when I visit. They no longer worry.

I have not had a DEXA scan yet. I will have that in March.

I did not purposefully avoid meds for 14 years. I tried bisphosphonates (oral) but while on cancer meds that worsened bones, my docs did not want to do Reclast (at the time he thought it might aggravate my afib) and my doc does not want Prolia for me (can't stop it w/out Reclast afterward). I tried Forteo years ago and even saw an immunologist to try to get on it.

Tymlos at full dose caused a lot of problems. I am grateful to have started it again at two out of 8 clicks. For almost a year now I have been at 7 out of 8 clicks. Side effects go away after a month or so.

I am glad to hear that strontium is back on the market. In the US, Doctor's Best stopped making it. I would appreciate seeing studies that show that it was the ranelate that was causing the risks. I do think it is too slow and gentle for those of us with severe osteoporosis but I would consider it as a follow up to Tymlos (versus Reclast) for maintenance, if it is truly safe.

@travelgal50 be aware that stopping Prolia can bring vertebral fractures pretty quickly for some people, according to what I have learned over the years, and you have to either stay on Prolia or follow with another drug to avoid an abrupt drop in bone density. Alendronate is a bisphosphonate.

Both Prolia and alendronate may interfere with effectiveness of the stronger bone-builders like Forteo, Tymlos and Evenity. The problem is that insurance wants us to fail the "front line" bisphosphonates or Prolia first. If you have fractures or a serious DEXA result, perhaps you could try a bone-builder first.

Forums like Inspire through the National Osteoporosis Foundation have experts like dexaguru, a doc in the field, who can give more info on the false readings that result from strontium. I think it is fine to use it if safe, but it is misleading to post improvements without a caveat, that's all.

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Thank you for this information about your experience with Tymlos. Do you know what bone medication you will be on after completing the Tymlos . I am so afraid . I have side affects of meds like antidepressants and others. I have had several compression fractures this year.(so painful and slow to heal) My doctor is suggesting Tymlos .

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@autumnanna

Thank you for this information about your experience with Tymlos. Do you know what bone medication you will be on after completing the Tymlos . I am so afraid . I have side affects of meds like antidepressants and others. I have had several compression fractures this year.(so painful and slow to heal) My doctor is suggesting Tymlos .

Jump to this post

Hi autumnanna. My doc wants me to do a partial dose of Reclast (1/4 dose?) and monitor, and I can then take a break from meds until DEXA shows a need. He is a top doc at a top hospital. I have also discussed Evenity with him if I am not happy with results from Tymlos. (You can take Evenity after Tymlos but not the other way around).

I have side effects to sooooo many medicines. Brand name and certain manufacturers may be better for me. I tried Forteo years ago and had a weird reaction and saw an immunologist w/out success. So I understand.

I like Tymlos because the delivery pen is adjustable. I tried just two clicks out of 8, as I wrote before. I have been on 7 clicks for a year. My doc was even okay with 6.

I would try not to panic if you have side effects at first. Headache, heart palpitations (I didn't have those), dizziness, nausea- ALL went away within a month and at two clicks I had no side effects.

Tymlos will help you heal the fractures as well as prevent further ones. It is especially good for spine, I have been told. I feel sooo much better. I spent months in bed and just walked 21 miles in two days 🙂 I will never be able to lift a lot and I am a tiny person now, 5'1" down from 5"4 1/2 "!!

Good luck!

REPLY
@windyshores

Hi autumnanna. My doc wants me to do a partial dose of Reclast (1/4 dose?) and monitor, and I can then take a break from meds until DEXA shows a need. He is a top doc at a top hospital. I have also discussed Evenity with him if I am not happy with results from Tymlos. (You can take Evenity after Tymlos but not the other way around).

I have side effects to sooooo many medicines. Brand name and certain manufacturers may be better for me. I tried Forteo years ago and had a weird reaction and saw an immunologist w/out success. So I understand.

I like Tymlos because the delivery pen is adjustable. I tried just two clicks out of 8, as I wrote before. I have been on 7 clicks for a year. My doc was even okay with 6.

I would try not to panic if you have side effects at first. Headache, heart palpitations (I didn't have those), dizziness, nausea- ALL went away within a month and at two clicks I had no side effects.

Tymlos will help you heal the fractures as well as prevent further ones. It is especially good for spine, I have been told. I feel sooo much better. I spent months in bed and just walked 21 miles in two days 🙂 I will never be able to lift a lot and I am a tiny person now, 5'1" down from 5"4 1/2 "!!

Good luck!

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Oh thank you so much! This is so helpful. So happy to hear you can walk etc . I pray I could get results enough to have less pain and to do simple things again . This is really painful and crippling Thank you!

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