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Tymlos Side effects
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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@njx58 @lori62yb
Osteoporosis drugs targets bone tissue receptors directly - it does not matter whether you weight 100 or 300 lbs
As far as how they leave your system - they circulate through your bloodstream and are filtered out by your kidneys or broken down by natural biological processes at a steady rate, regardless of how much you weigh.
In there words: unlike medications that need to soak through all your body fat or muscle to work (where weight matters a lot), bone drugs go straight to your skeleton or filter out through your kidneys at a standard rate, which is why your scale weight doesn't dictate the prescription size.
References
Drake, M. T., Clarke, B. L., & Khosla, S. (2008). Bisphosphonates: Mechanism of action and role in clinical practice. Mayo Clinic Proceedings, 83(9), 1032–1045. https://doi.org/10.4065/83.9.1032
Paik, J., & Scott, L. J. (2020). Romosozumab: A review in postmenopausal osteoporosis. Drugs & Aging, 37(11), 845–855. https://doi.org/10.1007/s40266-020-00793-8
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1 Reaction@roseincalifornia @njx58 @lori62yb
Regarding my above comment, I am not saying osteoporosis drugs do not have side effects. For example, for many people, Reclast causes discomfort (fever, etc) for a few days. But these side effects are independent of the weight of the subject. I am on Tymlos, and have experienced no side effects, and fortunately, most people (as documented in wide-scale studies) experience much fewer side effects on Tymlos than Reclast. But, like in Reclast, those side effects caused by Tymlos are not due to the body weight of the subject.
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.
Although that study appears to have been two years before it was officially released for public use prescribed by a doctor…the best results have been at the 80mcg dose. There is a transdermal patch in the works to help with “compliance issues”
Not a big fan of wiki but here is an update
https://en.wikipedia.org/wiki/Abaloparatide
@gently
But there are not (generally speaking) substantial differences in size of those organs. Many of the studies are being updated because so many are from 2015-2017.
There must also be a good reason Radius medical who owns the Tymlos patent (not Amgen) goes by the 80mcg?
Radius Health holds the patents on abaloparatide, with expiration dates ranging from 2027 to 2028.
Just my 2 cents worth.🤗
My doctor had me titrate to 8 clicks over a week's time. Seemed to do find up to 8 but when I hit 8 that gave me BAD headaches at the base of my skull and up. I went back down to 2 clicks and titrated up more slowly. At 6, I didn't have headaches but felt tired and woozy all morning. I am now at 5 clicks (after 2 months of messing with the dose) and will continue to try to get to 8. I too have dry eyes and haven't found a drop yet that helps. I try to hydrate, which is very important with Tymlos, but seems to be worse, especially at night. With all that said, it could be my historical condition is just getting worse, it's summer and it's very hot and dry or I'm think I'm hydrating but not enough. I'm going to try a gel next.
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1 ReactionAmgen is clear that 40mcg is effective. 80 mcg is more effective in tests for safety limits.
Most people who are titrating are allowing time for their parathyroid gland to adjust. Serum pth is lower between the 4 and 20 hour window after injection in the month following initiation. For some the side effects are intolerable at 80 and why shouldn't they have the advantage taking a medication that remodels bone even if it isn't as effective as 60, 70, or 80 mcg would be.
Body weight is never just body weight. It's metabolism, organ size, bone size, fat/muscle ratio, vascular extension.
I can say that I think that set dosages for some of these medications are too high for some of us lightweights. I can't say I have proof and I shouldn't say that Amgen is in any way responsible for Tymlos.
Taking these drugs is like playing dominoes. Even the manufacturers don't understand the side effects. Say of Evenity. No one knows the effect of the reduction of sclerostin on the heart valves, the joints, the liver
No one knew when Prolia was widely prescribed that it would cause multiple compression fractures in the unfortunate women who, on medical advise, just stopped taking the drug. Clinical trials never answer these questions.
Your correction, as are all of your posts, worth more than two cents. Amgen had no involvement with Tymlos.
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1 Reaction@osteopatient2026 I read somewhere that Radius abandoned the patch because the FDA wanted an expensive longer term trial. But I don know where or when I read this, so why do I mention it.
@gently
Well that sure sounds like it could be. I’ll see what I can find out. ❤️
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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