1. < Osteoporosis & Bone Health

How long does it take for Tymlos side effects to subside?

Posted by rhondat1964 @rhondat1964, Jun 12, 2023

I’ve been in Tymlos for two months now and have bone pain, dizziness and just overall aches and pains. Does this get better?

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windyshores | @windyshores | Jul 4, 2023
In reply to @normahorn "I do NOT have a needle phobia. I actually watch as the phlebotomist draws blood and..." + (show)
@normahorn

I do NOT have a needle phobia. I actually watch as the phlebotomist draws blood and I have given a dog sub-Q fluids. What I have is a fear that the adverse reactions would exacerbate my balance issue which could prove fatal for me. I am considering risking a fracture over death or being paralyzed from the neck down. ( I live in a three story townhouse.) That is why a slow release from a patch appeals to me . Others might stay with the program if the adverse reactions were mitigated.

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Oh gee, I was not implying you were a needle phobe. Needle phobia is a real obstacle to treatment for some, though and is not a pejorative term. The thing is the slow release patch is not effective. I have central vertigo, inner ear issues and vestibular migraine so I understand the loss of balance (along with 7 spinal fractures). But I have not had that issue with Tymlos myself, except for the first week or two.

As with my cancer meds, I don't think that effectiveness is possible without side effects, at least for some of us. Side effects may be a byproduct of the very mechanism that makes the drugs work.

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mariajean03 | @mariajean03 | Jul 4, 2023
In reply to @windyshores "@mariajean03 McCormick is a chiropractor who wrote "The Whole Body Approach to Osteoporosis" and the recent..." + (show)
@windyshores

@mariajean03 McCormick is a chiropractor who wrote "The Whole Body Approach to Osteoporosis" and the recent 700 page "Great Bones." If your DEXA scores are under -3.0 (or sometimes -3.5 ?) he might recommend a holistic approach but he also suggests meds and did them himself at one time.

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Thanks. I'll look him up. I think regenerative medicine is the wave of the future but won't get approved by the FDA because big drug companies would falter. I also wonder why Asia is so healthy with the holistic approach! Just my thoughts.

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1 reply
windyshores | @windyshores | Jul 4, 2023
In reply to @mariajean03 "Thanks. I'll look him up. I think regenerative medicine is the wave of the future but..." + (show)
@mariajean03

Thanks. I'll look him up. I think regenerative medicine is the wave of the future but won't get approved by the FDA because big drug companies would falter. I also wonder why Asia is so healthy with the holistic approach! Just my thoughts.

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@mariajean03 rates of osteoporosis are higher in Japan and about the same overall in China, as examples, compared to the US:
https://josronline.biomedcentral.com/articles/10.1186/s13018-021-02772-0
According to a systematic and meta-analysis study in China, the prevalence of osteoporosis from 2003 to October 2015 was reported to be 15.33% in men and 25.41% in women. It can be concluded that the overall prevalence of osteoporosis was 20% [94].

In a study, the prevalence of osteoporosis was assessed in several industrialized countries (USA, Canada, five European countries, Australia, and Japan) and people aged 50 and over. The prevalence of osteoporosis in the spine or hip was reported as follows: 26.3% in Japan, 21% in the USA, 14.3% in Germany, 9.9% in France, 9.7% in Italy, 7.8% in the United Kingdom, 6.3% in Spain, 2.6% in Canada, and 2% in Australia. Overall, the number of people with osteoporosis is estimated at 49 million.

Also:
"The results of subgroup analysis also show that among men, the highest prevalence of osteoporosis was in Asia and among women, the highest prevalence of osteoporosis was in Africa."

It is easy to find other articles or studies on osteoporosis in countries in Asia, if you are interested.

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1 reply
ymv | @ymv | Jul 5, 2023

I’m also finding that the side effects are quite variable from day to day. I chose to administer the medication after dinner when I settle down to watch tv. Shortly after administering it, I am slammed with a headache and nausea but it frequently fades in several hours. Earlier this week I had several days of low back pain. This morning the headache and nausea are still present. While annoying and definitely uncomfortable I’m able to manage/tolerate the side effects, at this point. I will consider clicking down if they become worse. Although I never know what the day will be like it’s evident that there will be some side effects.

With my current osteoporotic fractures and fear of future fractures and more limited mobility or lifestyle restrictions, Tymlos is extremely important treatment.

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jmmjml | @jmmjml | Jul 5, 2023

Does anyone take anything to get rid of the headaches and does it help?

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njhornung | @normahorn | Jul 5, 2023

I was mistaken in assuming the Tymlos patch was slow release. It was applied for 5 minutes a day. In a phase 3 trial, the patch was less effective than injections and had more adverse reactions reported. However, fewer people dropped out because of those reactions so the patch may be slightly ssfer.
https://www.evaluate.com/vantage/articles/news/trial-results/radius-takes-tumble

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1 reply
mariajean03 | @mariajean03 | Jul 5, 2023
In reply to @windyshores "@mariajean03 rates of osteoporosis are higher in Japan and about the same overall in China, as..." + (show)
@windyshores

@mariajean03 rates of osteoporosis are higher in Japan and about the same overall in China, as examples, compared to the US:
https://josronline.biomedcentral.com/articles/10.1186/s13018-021-02772-0
According to a systematic and meta-analysis study in China, the prevalence of osteoporosis from 2003 to October 2015 was reported to be 15.33% in men and 25.41% in women. It can be concluded that the overall prevalence of osteoporosis was 20% [94].

In a study, the prevalence of osteoporosis was assessed in several industrialized countries (USA, Canada, five European countries, Australia, and Japan) and people aged 50 and over. The prevalence of osteoporosis in the spine or hip was reported as follows: 26.3% in Japan, 21% in the USA, 14.3% in Germany, 9.9% in France, 9.7% in Italy, 7.8% in the United Kingdom, 6.3% in Spain, 2.6% in Canada, and 2% in Australia. Overall, the number of people with osteoporosis is estimated at 49 million.

Also:
"The results of subgroup analysis also show that among men, the highest prevalence of osteoporosis was in Asia and among women, the highest prevalence of osteoporosis was in Africa."

It is easy to find other articles or studies on osteoporosis in countries in Asia, if you are interested.

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Not interested. But thank you for your research.

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windyshores | @windyshores | Jul 5, 2023
In reply to @normahorn "I was mistaken in assuming the Tymlos patch was slow release. It was applied for 5..." + (show)
@normahorn

I was mistaken in assuming the Tymlos patch was slow release. It was applied for 5 minutes a day. In a phase 3 trial, the patch was less effective than injections and had more adverse reactions reported. However, fewer people dropped out because of those reactions so the patch may be slightly ssfer.
https://www.evaluate.com/vantage/articles/news/trial-results/radius-takes-tumble

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@njhornung it sounds like 5 minutes was too "slow" of a "release"!

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cloud60 | @cloud60 | Jul 5, 2023
In reply to @windyshores "3-4 fractures from a severely traumatic fall 2006 2-3 osteoporotic fractures from a movement similar to..." + (show)
@windyshores

3-4 fractures from a severely traumatic fall 2006
2-3 osteoporotic fractures from a movement similar to
putting a bathing suit on while sitting

My spine was -3.7 in June 2021. And -2.5 in April 2023.
My hip was -3.4 and now -2.9.
Femur neck was -4.1, now -3.6.

I did 5 years of letrozole for breast cancer, which eliminates estrogen and affects bones. Most do Reclast during that treatment but my endo was afraid of afib with it (now disproven). I may have had those great results because I have never been able to be on any other meds, and also because there may have been an estrogen boost when I stopped letrozole in 2020, who knows. Also although the DEXA machine was the same, the technicians did different "areas of interest." They omitted the fractured vertebrae but you never know if arthritis affected it as well. At any rate, no new fractures since 4/2021! I can't lift 5 lbs. let alone 100.

I didn't do too badly with 8 clicks today.

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I took a 42 hour break and went back to 4 and have the same lightheaded
headache experience , I did salt and food etc before and water electrolyte
drink, I think possibly if I do the whole thing late at night starting
tomorrow night like 11 pm and just go to sleep for side effects

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1 reply
windyshores | @windyshores | Jul 5, 2023
In reply to @cloud60 "I took a 42 hour break and went back to 4 and have the same lightheaded..." + (show)
@cloud60

I took a 42 hour break and went back to 4 and have the same lightheaded
headache experience , I did salt and food etc before and water electrolyte
drink, I think possibly if I do the whole thing late at night starting
tomorrow night like 11 pm and just go to sleep for side effects

Jump to this post

@cloud60 I just hope you don't wake up to side effects. I just had side effects 9-12am with 7 clicks but now they are gone. Overall fatigue remains no matter what I do so I get myself going. I still get woozy/lightheaded with 7-8 clicks but have not had a headache since my first two weeks in 6/21. I was hoping yours would go away.

Originally I could not tolerate 4 clicks. Hope that gives you hope.

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