Tymlos Side effects

Posted by lori62yb @lori62yb, Aug 6 9:57am

Hello! I started taking Tymlos injections 5 days ago and almost immediately got a headache across my forehead. It lasted a few hours and I did dose with Tylenol. The next morning, I began to have facial pain, like I was suffering from allergies. The bigger issue, is I’ve suffered from severe dry eye for 10 years. I use Restasis daily, and have had some dissolving plugs put in recently, to help with the dryness. Since starting Tymlos, my dry eye is out of control and unbearable. I’m unable to sleep, with the eye pain and the headache, that is also in my cheeekbones.
I’ve had osteoporosis since I was 45, and have done infusions over the years. At 64 my Rheumatologist wanted me to try a bone builder, but I can’t do this much longer. She had wanted me to take a different medication, but my insurance said I had to try Tymlos first.
Any help you can offer, will be much appreciated. I’m an active 64 year old, riding my Peloton bike and lifting weights, I just want to continue this lifestyle, without feeling awful on a medication.
Thank you, Lori

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Profile picture for memuno1stborn @memuno1stborn

The neurosurgeon required Tymlos prior to spinal fusion surgery because of severe osteoporosis. It's now 7 months since initial Tymlos. I skipped a month post-surgery because of all the other medications I was taking, but immediately back on daily Tymlos after post-surgery rehab. I am now in osteopenia category and believe this progress is due to Tymlos. Because of nausea and headache with Tymlos I went from full dosage to 6 clicks a few months after starting the Tymlos injections. The headache and nausea continued with lower dosage but with less intensity. This is why I take Tymlos just before bedtime--I fall asleep while Tymlos is doing its work. Additionally, I've been on progesterone as part of bio-identical hormone replacement therapy (BHRT). Evidently, progesterone is also a sleep aid which might be why I'm not conscious of the nausea and headache. I'm not advocating progesterone--just mentioning it for full disclosure as to its possible effect on my ability to sleep through the nausea and headache from Tymlos.

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@memuno1stborn
Doctor told me the headaches are most commonly caused by from dehydration and mis management of calcium etc.
Don’t know if you asked…maybe a second opinion from a specialist…I’ve found more good info here…gently has been very helpful and knowledgeable

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Profile picture for gently @gently

roseincalifornia,
I'm glad that you took Tymlos without having any side effects.
I like to be careful not to discourage others, many of whom have been advised by their physicians to titrate, from having the advantage of this medication. We do have clinical trial evidence that it is effective at 40mg.
The hypothesis that weight isn't a factor in side effects isn't supported by Amgen's prescribing guide from 2017. The clinical trials after excluding those at both BMI ends, never tracked weight at all.
It isn't just the active ingredients that can excite either side effects or adverse events.
It seems to me that just the biology of having a larger kidney with more weight would be enough conviction that weight matters. Larger kidney, larger bladder, larger bones.
We were lucky, you and I, but that doesn't put us in the catbird seat.
Best luck with the next medicaion.

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@gently

Thanks for the correction @gently. Tymlos targets specific receptors on bone-forming cells to build bone mass. That cellular process doesn't change based on your size.

But, in a smaller body with a lower total blood and fluid volume, the standard dosage of 80 mcg results in a higher concentration in the blood transiently right after the injection. That temporary spike in concentration may trigger the cardiovascular side effects—like a sudden drop in blood pressure, lightheadedness, or a racing heart. So while the bone-building mechanism doesn't care about your weight, your circulatory system feels the peak concentration more intensely if you have a smaller frame.

Some comments on: "It seems to me that just the biology of having a larger kidney with more weight would be enough conviction that weight matters. Larger kidney, larger bladder, larger bones."

1. The Side Effects Happen Before the Kidneys Get Involved
The lightheadedness, drop in blood pressure, and palpitations that happen after a Tymlos injection occur within minutes—driven by the drug temporarily relaxing blood vessels as it circulates in the blood.The kidneys are responsible for filtering waste out of the blood over time, but they don't prevent or control that initial peak concentration in the bloodstream.
Furthermore, Tymlos is actually cleared from the body primarily via glomerular filtration, but its clearance rate does not require dose adjustments based on weight or kidney size.

2. Bone Size Doesn't Mean You Need a Different Dose. While a larger person does have a larger skeletal mass, Tymlos is an anabolic (bone-building) agent that works by binding to specific parathyroid hormone receptors on bone cells. Receptors don't "soak up" the drug like a sponge based on bone size. The 80 mcg flat dose is more than enough to saturate the targeted cellular pathways in anyone, regardless of whether they have a larger or smaller skeletal frame.

3. What Actually Matters: Fluid Volume, Not Organ Size. The real reason a smaller person feels the side effects more intensely comes down to total blood and extracellular fluid volume, not the physical size of their kidneys or bladder.

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Rose,
Tymlos immediately activates the receptor in the distal renal tubules which stimulates G-alpha-s proteins. This triggers adenylyl cyclase which increases intracellular cAMP production. The cAMP pathway move calcium back into the bloodstream contributing to the initial peak calcium concentration. It is the high concentration of calcium that relaxes the blood vessels.
Tymlos doesn't bind and isn't soaked up by the bone. It interacts with a hormone receptor on a cell called an osteoblast stimulating that cell to manufacture and secrete a soft matrix called osteoid. The osteoblast isn't actually bone.
Kidney size and mass is one factor in the body's resulting total fluid volume. Bladder capacity affects the level of total blood volume and extracellular fluid volume.
But none of this proves that 80mcg of abaloparatide is too high a dose for some of us lightweights. Nor do your views expressed expressed above prove that 80mcg is the perfect dose without regard to weight.
If someone were allergic to the preservative in Tymlos there is no doubt that lower body weight would be increase the negative effect of the 2mcg of phenol in a Tymlos dose.

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Profile picture for roseincalifornia @roseincalifornia

@gently

Thanks for the correction @gently. Tymlos targets specific receptors on bone-forming cells to build bone mass. That cellular process doesn't change based on your size.

But, in a smaller body with a lower total blood and fluid volume, the standard dosage of 80 mcg results in a higher concentration in the blood transiently right after the injection. That temporary spike in concentration may trigger the cardiovascular side effects—like a sudden drop in blood pressure, lightheadedness, or a racing heart. So while the bone-building mechanism doesn't care about your weight, your circulatory system feels the peak concentration more intensely if you have a smaller frame.

Some comments on: "It seems to me that just the biology of having a larger kidney with more weight would be enough conviction that weight matters. Larger kidney, larger bladder, larger bones."

1. The Side Effects Happen Before the Kidneys Get Involved
The lightheadedness, drop in blood pressure, and palpitations that happen after a Tymlos injection occur within minutes—driven by the drug temporarily relaxing blood vessels as it circulates in the blood.The kidneys are responsible for filtering waste out of the blood over time, but they don't prevent or control that initial peak concentration in the bloodstream.
Furthermore, Tymlos is actually cleared from the body primarily via glomerular filtration, but its clearance rate does not require dose adjustments based on weight or kidney size.

2. Bone Size Doesn't Mean You Need a Different Dose. While a larger person does have a larger skeletal mass, Tymlos is an anabolic (bone-building) agent that works by binding to specific parathyroid hormone receptors on bone cells. Receptors don't "soak up" the drug like a sponge based on bone size. The 80 mcg flat dose is more than enough to saturate the targeted cellular pathways in anyone, regardless of whether they have a larger or smaller skeletal frame.

3. What Actually Matters: Fluid Volume, Not Organ Size. The real reason a smaller person feels the side effects more intensely comes down to total blood and extracellular fluid volume, not the physical size of their kidneys or bladder.

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@roseincalifornia
Excellent explanation …I like that you included the GFR as a metric.

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Profile picture for gently @gently

Rose,
Tymlos immediately activates the receptor in the distal renal tubules which stimulates G-alpha-s proteins. This triggers adenylyl cyclase which increases intracellular cAMP production. The cAMP pathway move calcium back into the bloodstream contributing to the initial peak calcium concentration. It is the high concentration of calcium that relaxes the blood vessels.
Tymlos doesn't bind and isn't soaked up by the bone. It interacts with a hormone receptor on a cell called an osteoblast stimulating that cell to manufacture and secrete a soft matrix called osteoid. The osteoblast isn't actually bone.
Kidney size and mass is one factor in the body's resulting total fluid volume. Bladder capacity affects the level of total blood volume and extracellular fluid volume.
But none of this proves that 80mcg of abaloparatide is too high a dose for some of us lightweights. Nor do your views expressed expressed above prove that 80mcg is the perfect dose without regard to weight.
If someone were allergic to the preservative in Tymlos there is no doubt that lower body weight would be increase the negative effect of the 2mcg of phenol in a Tymlos dose.

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The key to knowing if you might benefit from titrating Tymlos is not weight, but side effects.
I would encourage anyone having side effects to consider titration because Tymlos builds the integrated, strong bone that serves us best.
Cheers to the doctors who start their patients with titration saving their patients the common initial headache, nausea (especially nausea), and dizziness.

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Profile picture for gently @gently

The key to knowing if you might benefit from titrating Tymlos is not weight, but side effects.
I would encourage anyone having side effects to consider titration because Tymlos builds the integrated, strong bone that serves us best.
Cheers to the doctors who start their patients with titration saving their patients the common initial headache, nausea (especially nausea), and dizziness.

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@gently
I would like to hear about titrating from Radius health and/or from a doctor that is a specialist in osteoporosis…❤️

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Profile picture for osteopatient2026 @osteopatient2026

@gently
I would like to hear about titrating from Radius health and/or from a doctor that is a specialist in osteoporosis…❤️

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@osteopatient2026 I don't think Radius (the producer of Tymlos for those who are not aware) can legally discuss any dosing regimes outside what they did in clinical trials to attain FDA approval, without doing trials on specific titration schedules. You would think at some point it would be in their interest to do so and help patients get through full courses of the stuff but maybe they don't feel extra $$ on trials is worth it . Also there are plenty of us (me included) that reach therapeutic targets on much lesser doing but there will be no discussion of that from Radius either. And frankly why would they bother to get approval for lesser doses when they have a financial incentive to sell more of the stuff?! Capitalism folks. As always it is up to the doctors and patients to navigate the nuances of dosing regimes unfortunately, so it is up to us as patients to keep as informed as possible and push back. That sometimes means seeking out new doctors who have the courage to be more flexible with their patients.

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Profile picture for michieg @michieg

@osteopatient2026 I don't think Radius (the producer of Tymlos for those who are not aware) can legally discuss any dosing regimes outside what they did in clinical trials to attain FDA approval, without doing trials on specific titration schedules. You would think at some point it would be in their interest to do so and help patients get through full courses of the stuff but maybe they don't feel extra $$ on trials is worth it . Also there are plenty of us (me included) that reach therapeutic targets on much lesser doing but there will be no discussion of that from Radius either. And frankly why would they bother to get approval for lesser doses when they have a financial incentive to sell more of the stuff?! Capitalism folks. As always it is up to the doctors and patients to navigate the nuances of dosing regimes unfortunately, so it is up to us as patients to keep as informed as possible and push back. That sometimes means seeking out new doctors who have the courage to be more flexible with their patients.

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@michieg
The real telling would be what are your dexa results and it would be hard to tell what they would have been at recommended full dose. That said I agree…there isn’t any money in making it public that one could be reducing the dose. I’m sure that many patients have reported weight gain and other side effects but they are not making those reports public. You have to trust AI results saying tha5 some have reported…etc.

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Profile picture for michieg @michieg

@osteopatient2026 I don't think Radius (the producer of Tymlos for those who are not aware) can legally discuss any dosing regimes outside what they did in clinical trials to attain FDA approval, without doing trials on specific titration schedules. You would think at some point it would be in their interest to do so and help patients get through full courses of the stuff but maybe they don't feel extra $$ on trials is worth it . Also there are plenty of us (me included) that reach therapeutic targets on much lesser doing but there will be no discussion of that from Radius either. And frankly why would they bother to get approval for lesser doses when they have a financial incentive to sell more of the stuff?! Capitalism folks. As always it is up to the doctors and patients to navigate the nuances of dosing regimes unfortunately, so it is up to us as patients to keep as informed as possible and push back. That sometimes means seeking out new doctors who have the courage to be more flexible with their patients.

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@michieg Phase 2 of Tymlos' clinical trials included 20 mcg, 40 mcg, and 80 mcg, per a link to an NIH article that somebody posted a couple days ago. Sure wish that info was more readily available to our providers, esp those who are not comfortable supporting any dose adjustment, aside from the full 80 mcg. It really hurts those of us struggling with side effects.

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I’m not sure but there are references made from other similar articles that are from 2015…two years before release. I would hope that something on this becomes official…but until then for me…When Radius announces a dosage variant that has the same efficacy as a full dose that would be great…but until then, you are on your own.
Especially for those of us whose tscore is -5.1…one needs every advantage possible and since abalaparatide falls into the more useful category for “severe osteoporosis” I don’t want to second guess the side effects vs a spinal or hip fracture …more severe side effects…the drug may not be the right one. Just an opinion
🤗

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