1. < Osteoporosis & Bone Health

Tymlos side effects I've encountered

Posted by anniesan @anniesan, Oct 2, 2022

Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?

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bluebonnet242 | @bluebonnet242 | May 27 8:16pm
In reply to @windyshores "I just do Nordic Naturals gummies- 1,000 units Dx combined with 45 mcg K2. I have..." + (show)
@windyshores

I just do Nordic Naturals gummies- 1,000 units Dx combined with 45 mcg K2. I have trouble taking a lot of pills. I am sure others will chime in with better brands.

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Thanks!

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1 reply
windyshores | @windyshores | May 27 9:44pm
In reply to @bluebonnet242 "Thanks!" + (show)
@bluebonnet242

Thanks!

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D3 - typo!

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ymv | @ymv | May 28 7:43am

I take Seeking Health which has 5,000iu of vitamin D and 100mcg of vitamin k2

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maureent | @maureent | May 28 10:03am
In reply to @windyshores "@maureent I had bone marker blood tests done at 18 months that showed Tymlos was no..." + (show)
@windyshores

@maureent I had bone marker blood tests done at 18 months that showed Tymlos was no longer building bone. It might have stopped even earlier. At 18 months I had gained 20% in spine going from severe to borderline. Maybe you could consider stopping earlier. I did do 2 years but only for maintenance and to delay decisions about follow up because I was having other health problems.

You could do bone markers and maybe a DEXA to see where you are.

Radius Assist, the financial assistance program for Tymlos, only covers 18 months which may say something!

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Thank you for these suggestions, @windyshores. I really appreciate your ideas!

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drsuefowler | @drsuefowler | May 29 8:07am

I saw a new endo PA yesterday. When she saw the results of my 24 hour urine test (calcium value 338 with reference range 35-250), she said this is when they typically stop Tymlos. High calcium can lead to kidney stones. She wanted me to switch to Prolia. I said I didn't want that. She then realized that I still needed to build bone. She doesn't like Evenity, because she thinks it can cause a stroke. When I explained that I was purposely eating foods high in calcium trying to decrease my dependence on supplements, she suggested that I stop taking the supplements for a month and have another 24 hour urine test to see if that takes care of the high calcium problem. I like this option. She will present my case to the endo who supervises her when he gets back from vacation. My next appointment is with him.

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1 reply
windyshores | @windyshores | May 29 8:30pm
In reply to @drsuefowler "I saw a new endo PA yesterday. When she saw the results of my 24 hour..." + (show)
@drsuefowler

I saw a new endo PA yesterday. When she saw the results of my 24 hour urine test (calcium value 338 with reference range 35-250), she said this is when they typically stop Tymlos. High calcium can lead to kidney stones. She wanted me to switch to Prolia. I said I didn't want that. She then realized that I still needed to build bone. She doesn't like Evenity, because she thinks it can cause a stroke. When I explained that I was purposely eating foods high in calcium trying to decrease my dependence on supplements, she suggested that I stop taking the supplements for a month and have another 24 hour urine test to see if that takes care of the high calcium problem. I like this option. She will present my case to the endo who supervises her when he gets back from vacation. My next appointment is with him.

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This all sounds good @drsuefowler except it is not proven that Evenity causes stroke. Compared to a placebo, there was no difference; compared to alendronate there was a small difference, resulting in the black box warning. But one study I read attributed this to chance. More research is needed since it has not been in use for a long time.

Do you have special risks for stroke?

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1 reply
drsuefowler | @drsuefowler | May 30 11:04am
In reply to @windyshores "This all sounds good @drsuefowler except it is not proven that Evenity causes stroke. Compared to..." + (show)
@windyshores

This all sounds good @drsuefowler except it is not proven that Evenity causes stroke. Compared to a placebo, there was no difference; compared to alendronate there was a small difference, resulting in the black box warning. But one study I read attributed this to chance. More research is needed since it has not been in use for a long time.

Do you have special risks for stroke?

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@windyshores, I don't know about my risk for stroke. I just looked up the risks. All I have is age and my grandmother had several strokes. Interesting about the study results not showing a significant chance for stroke with Evenity. Thanks for your response.

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