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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@stress101

When I asked my endocrinologist about lower dosage she only replied there is only one dose, so feel she does not know about the clicks. She did have all bloodwork done before suggesting Tymlos.
Thank you again for the help. I have read windyshores posts and they are so helpful.

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@stress101
Many physicians won’t agree to the titrated dosage idea. It’s a shame since there have been people here on this forum (like WindyShores) who were successful with seven clicks. Maybe take the dosage you can tolerate and just don’t tell the doc! Just a thought…I was honest about only doing 0.6 (six clicks) and my rheumatologist took me off. I would have liked to have seen results before being discontinued.

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@lhankins

@stress101
Many physicians won’t agree to the titrated dosage idea. It’s a shame since there have been people here on this forum (like WindyShores) who were successful with seven clicks. Maybe take the dosage you can tolerate and just don’t tell the doc! Just a thought…I was honest about only doing 0.6 (six clicks) and my rheumatologist took me off. I would have liked to have seen results before being discontinued.

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@lhankins that's awful! What did you end up taking afterwards?

I recall there was a study conducted for abaloparatide (Tymlos) with different doses 20mcg, 40mcg, and 80mcg (for 6mo only and a small study though). Although 80mcg showed best bmd increase, lower doses were not 100% ineffective - results showed a dose-dependent fashion.

While users of Tymlos should strive for the the marketed dose 80mcg to achieve maximal therapy results, dose titration upwards at the beginning of the therapy for those who experience severe adverse effects proved to be a great way to get 'accustomed' to Tymlos. Many members here at Connect had done so - @windyshores had many posts describing the method.

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@mayblin

@lhankins that's awful! What did you end up taking afterwards?

I recall there was a study conducted for abaloparatide (Tymlos) with different doses 20mcg, 40mcg, and 80mcg (for 6mo only and a small study though). Although 80mcg showed best bmd increase, lower doses were not 100% ineffective - results showed a dose-dependent fashion.

While users of Tymlos should strive for the the marketed dose 80mcg to achieve maximal therapy results, dose titration upwards at the beginning of the therapy for those who experience severe adverse effects proved to be a great way to get 'accustomed' to Tymlos. Many members here at Connect had done so - @windyshores had many posts describing the method.

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@mayblin
I was on the 0.8 (total clicks) for several months and then developed hypercalcemia and my rheumatologist took me off. He would not consider Evenity either since he said I would probably not tolerate that well either. He gave me the option of Prolia and I declined for the time being. I am in a point of limbo until I can see an endocrinologist. My appt is not until January 2026. I’m doing my best with nutrition, exercise and supplements until then. Crossing my fingers I will get a better treatment plan in 2026 and not having any fractures between now and then.

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@lhankins

@stress101
Many physicians won’t agree to the titrated dosage idea. It’s a shame since there have been people here on this forum (like WindyShores) who were successful with seven clicks. Maybe take the dosage you can tolerate and just don’t tell the doc! Just a thought…I was honest about only doing 0.6 (six clicks) and my rheumatologist took me off. I would have liked to have seen results before being discontinued.

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I understand and feel many Drs would be the same

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@gently

stress101, I'd try 3 clicks in the morning with salt and fluids and stay at three until the symptoms fade.

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Here I am not taking any last night so nothing since 8 Saturday night and 4 Sunday night and I still have same level of lightheaded, brain fog misery. Don’t think I am taking anything today feeling so miserable. Would anyone advise I just stop until symptoms stop or improve? I’m disappointed for know I need this but also so sensitive to drugs.
Thanks for advice

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stress101,
I would stop until the symptoms subsided. But I would also get a ionized calcium level plus a PTH serum level. And I'd take a sudafed because it is really tough to make decisions when our thinking is foggy. The sudafed dose is two pills, I only ever take one of the red ones that have a four hour duration.
What about fatigue or is that part of the fog.

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@gently

stress101,
I would stop until the symptoms subsided. But I would also get a ionized calcium level plus a PTH serum level. And I'd take a sudafed because it is really tough to make decisions when our thinking is foggy. The sudafed dose is two pills, I only ever take one of the red ones that have a four hour duration.
What about fatigue or is that part of the fog.

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I think my being tired could be the Tymlos has also caused me disturbed sleep like I drank caffeine before bedtime. I take medication to help me sleep, .250 of klonopin but I had to get up and take a half Benadryl last night to get to sleep at 3am. Why it was suggested to take tymlos during day.
I am going to do what you suggested and get this awful side effect away and the begin taking only 2 clicks. Where would I get the tests you mentioned? Can I do that on my own? And how does the Sudafed help you?
Thank you so much.

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stress101,
you can get the PTH and ionic calcium on your own in most states.
https://www.findlabtest.com/lab-test/hormone-testing/pth-calcium-test-quest-8837
but then you have to pay for them, which I sometimes do.
Your prescribing doctor might (should) order them for you, or your primary care.
The fog may be from the sleep aids, as I would expect side effects from Tymlos to be resolved within 24 hours
Benadryl can cross the blood brain barrier and is notable for its brain fog effect, but you may not be looking for extra information on benadryl.
It seems like (though I can't be sure) you have an excellent prescribing physician who is probably aware of the trouble hypercalcemia can cause with the anabolics. It might be possible to have a good conversation with this physician.
I'm always afraid of losing the scrip, losing the choice as lhankins did in my interactions with prescribers. I'm non confessional in those interactions.

Sudafed clears my brain. I take it a couple of times a year when failure to sleep or a peculiar allergy leaves me foggy. You probably know that it is otc but behind the pharmacy counter so you have to ask the pharmacist for it.

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I was on Tymlos for a very short period of time and reacted with a rash. Because I was on high doses of prednisone for an autoimmune disease, I had to take something and bisphosphonates were out of the question. My endocrinologist suggested taking the older drug, Forteo, which takes longer, but the dose is lower. I did that and again broke out with a less severe rash. I was prescribed Loratadine in the morning and Hydroxyzine HCL at bedtime and was able to tolerate it for a 2 year course.

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@gently

stress101,
you can get the PTH and ionic calcium on your own in most states.
https://www.findlabtest.com/lab-test/hormone-testing/pth-calcium-test-quest-8837
but then you have to pay for them, which I sometimes do.
Your prescribing doctor might (should) order them for you, or your primary care.
The fog may be from the sleep aids, as I would expect side effects from Tymlos to be resolved within 24 hours
Benadryl can cross the blood brain barrier and is notable for its brain fog effect, but you may not be looking for extra information on benadryl.
It seems like (though I can't be sure) you have an excellent prescribing physician who is probably aware of the trouble hypercalcemia can cause with the anabolics. It might be possible to have a good conversation with this physician.
I'm always afraid of losing the scrip, losing the choice as lhankins did in my interactions with prescribers. I'm non confessional in those interactions.

Sudafed clears my brain. I take it a couple of times a year when failure to sleep or a peculiar allergy leaves me foggy. You probably know that it is otc but behind the pharmacy counter so you have to ask the pharmacist for it.

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Thank you again. My sleep meds have never given me this feeling but being on pain meds could also contribute to to. Just never had sleep problems until taking Tymlos.
I’m hesitant to be upfront with what everyone has experienced on this site as you mentioned for what happened to you. So, I’m going to try easing back to it to see if I can tolerate it.
Thanks again for your help.

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