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 lori62yb @lori62yb

@bharris202 Hi! My pen is only set up for 80mcg click. I click, count to 10 and pull it out. I’m 5’3 120 pounds. I’ll ask my doctor about the dose. I’m doing daily injections for 2 years.

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@lori62yb Your pen is set up for anywhere from 10 to 80. Each click equals ten. You don't have to click eight times to 80; you could click four times for 40, and so on. Only "80" appears in the little window on the pen, but that doesn't mean you have to go that far.

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Profile picture for lori62yb @lori62yb

@osteopatient2026 Rheumatologist, I do have a referral in for an endocrinologist, for an unrelated medical issue.
I didn’t know there were so many Tymlos dosage levels. I’m 5’3 120 pounds, so maybe. My headache did come on within hours and I really am not wanting to push through that, for potentially weeks or months. Tylenol wasn’t taking it away, and Ibuprophen isn’t good to take daily for that long.
I will ask about the dosage, as I’m supposed to be on this daily injection for 2 years.
Thank you!

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@lori62yb
Officially there is only one dose 80mcg. There are some (including doctors…not that that means that much to me anymore based on all the conflicting information ) going to”off label” …
The headaches, if any for some, generally go away. Be sure to hydrate a lot…not just water…you need a little salt too like chips or pretzels ( I find pretzels easier on the tummy) …just water will flush out your electrolytes potentially…but that headache effect is often due to dehydration…

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Profile picture for lori62yb @lori62yb

@osteopatient2026 Rheumatologist, I do have a referral in for an endocrinologist, for an unrelated medical issue.
I didn’t know there were so many Tymlos dosage levels. I’m 5’3 120 pounds, so maybe. My headache did come on within hours and I really am not wanting to push through that, for potentially weeks or months. Tylenol wasn’t taking it away, and Ibuprophen isn’t good to take daily for that long.
I will ask about the dosage, as I’m supposed to be on this daily injection for 2 years.
Thank you!

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@lori62yb
Sounds like you are on the right track with the doctors…

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Profile picture for lori62yb @lori62yb

@bharris202 Hi! My pen is only set up for 80mcg click. I click, count to 10 and pull it out. I’m 5’3 120 pounds. I’ll ask my doctor about the dose. I’m doing daily injections for 2 years.

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@lori62yb Right…all the Tymlos pens are set up for 80mcg dosage. But…the end of the pen (that has the green button on it), has to get twisted clockwise (looking at the green button) to get from 0mcg in the dosage window to 80mcg in the dosage window. As you twist that end, you hear clicks. Each click = 10mcg. At 4 clicks, you see double arrows (40mcg = half dose). You can stop on 2 clicks (20mcg), 5 clicks (50mcg), etc. Both my doctor and the pharmacy told me you CANNOT titrate…but you can. The pen can be used at lesser dosages than 80mcg.

They just discourage less than 80mcg because the FDA testing/efficacy was performed at the full 80mcg.

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Profile picture for njx58 @njx58

@lori62yb Just be prepared for possible pushback. The manufacturer has not released any data on partial doses, so the doctor might not even consider it. I'd do it anyway. Many people here have done the same. What good is trying to take the full dose if the side effects are so bad that you can't do it? You can still get a beneficial effect from a partial dose.

My theory is: why does the Tymlos pen have an adjustable dose if it was never meant to be adjusted?

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@njx58, there is data on 20, 40 and 80mcg available through press releases. https://pmc.ncbi.nlm.nih.gov/articles/PMC4422091/
40 mcg Dose demonstrated moderate, steady increases in BMD. In subsequent regional trials, a 40 mcg dose increased lumbar spine BMD by 6.6% or thereabout.

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One more important piece of information about the every other day dosage theory…

The “stimulation” and biological mechanism that drugs like Tymlos provide are mostly via the parathyroid. After injection Tymlos peaks at about an hour and is pretty much out of your system in 5 hours.

Dosing every other day is tantamount to powering up an airplane engine to half power. It’s enough to get you down the runway but not enough to fly with. You need “full power” to get off the ground. It’s not that you don’t get some effect it just might not be enough. Also the pens were originally designed for “multipurpose” use. It’s relatively common for injection pens to have the ability to vary dosage in some cases. That said Tymlos was found to be most effective at 80mcg. So you might still get some results at lower doses.

I’ll report back what my results are around October…till then.

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I am a 100 lb and small framed female. I have no side effects with the standard Tymlos dose. I don't think body weight correlates with side effects on Tymlos. I think different people metabolize this drug independent of body size. I did a little research --

"Official prescribing guidelines do not require dosage adjustments based on body weight or mass. Pharmacokinetically, the drug is rapidly absorbed and cleared (with a short half-life of about 1 hour) through systemic pathways and renal excretion without a clinically significant variation tied strictly to total body weight."

See https://www.ncbi.nlm.nih.gov/books/NBK587447/

btw: I am not saying side effects do not occur, but most people are fine taking this drug.

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Profile picture for roseincalifornia @roseincalifornia

I am a 100 lb and small framed female. I have no side effects with the standard Tymlos dose. I don't think body weight correlates with side effects on Tymlos. I think different people metabolize this drug independent of body size. I did a little research --

"Official prescribing guidelines do not require dosage adjustments based on body weight or mass. Pharmacokinetically, the drug is rapidly absorbed and cleared (with a short half-life of about 1 hour) through systemic pathways and renal excretion without a clinically significant variation tied strictly to total body weight."

See https://www.ncbi.nlm.nih.gov/books/NBK587447/

btw: I am not saying side effects do not occur, but most people are fine taking this drug.

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@roseincalifornia I agree! I was surprised at how many are somehow microdosing on these pens?
Thank you for the response…

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Profile picture for lori62yb @lori62yb

@roseincalifornia I agree! I was surprised at how many are somehow microdosing on these pens?
Thank you for the response…

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@lori62yb

There is a lot of mis-information about these drugs. Sadly micro-dosing some of these drugs means one will not be getting the full effect, which means they will not realize the full increases in bone density these drugs were meant to provide.

There are some drugs where a low body weight needs to be considered - like NTI (e.g. Warfarin, Lithium) and central nervous system drugs. But for many drugs, like osteoporosis drugs, body size does not matter.

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Profile picture for gently @gently

@njx58, there is data on 20, 40 and 80mcg available through press releases. https://pmc.ncbi.nlm.nih.gov/articles/PMC4422091/
40 mcg Dose demonstrated moderate, steady increases in BMD. In subsequent regional trials, a 40 mcg dose increased lumbar spine BMD by 6.6% or thereabout.

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@gently Thanks, that's excellent information given how often this subject comes up here.

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