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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The patient studies show generally “most” people improve over a few weeks as your system acclimates to the effects of Tymlos on your parathyroid. Most of the initial effects are within an hour as the Tymlos leaves your system rapidly within 5 hours. I had the headache, nausea, rush feeling mostly for the first few weeks. For me it took a little longer but most of the side effects are much less now (9 months) and what remains doesn’t last long. Never into the next day. Take note that some people can get what is called an “anticipatory effect” where you psychologically expect the reaction. Try changing to another room where you do your injections…it helped me to do that and change the time slightly by a half hour or so.

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Profile picture for osteopatient2026 @osteopatient2026

The patient studies show generally “most” people improve over a few weeks as your system acclimates to the effects of Tymlos on your parathyroid. Most of the initial effects are within an hour as the Tymlos leaves your system rapidly within 5 hours. I had the headache, nausea, rush feeling mostly for the first few weeks. For me it took a little longer but most of the side effects are much less now (9 months) and what remains doesn’t last long. Never into the next day. Take note that some people can get what is called an “anticipatory effect” where you psychologically expect the reaction. Try changing to another room where you do your injections…it helped me to do that and change the time slightly by a half hour or so.

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@osteopatient2026 Thank you! Right now the headache is all day, so my doctor said to take a week off and try again. The headache I can take ibuprofen for, but my dry eye is really painful. I’ve never had it become painful like this, it actually is keeping me awake at night. It’s odd that this is the only new thing I’m doing and it started acting up the on day 2 of Tymlos.

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Are you seeing an endocrinologist or rheumatologist?
The all day headache sounds independent of Tymlos.
Does the Tylenol or ibuprofen help? How much?
I’m not sure why taking a week off would change anything.
Headaches are certainly a side effect…mine were a few hours after injection but got better. Think “too much coffee” …Tymlos can give you a headache from similar bio actions involving your parathyroid/parasympathetic system.

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Tymlos causes transient hypercalcemia. Hypercalcemia is most likely responsible for your headache. Hypercalcemia can also cause dry eye.
I can't remember anyone taking Tymlos every other day and there are no studies. There are people taking lower doses of Tymlos by listening to the click when you draw the medication into the vial. There isn't any numbering on the pen, but each click is 10mcg. There is an arrow in the window at 4 clicks. As the body adjusts, they raise the number of clicks. Some never get to 8 clicks--the full dose. The clinical trial used 2, 4 and 8 clicks. 8 clicks gave the most robust response, so it was adopted. 4 clicks resulted in good gains, though.
It might be that 80mcg is too much for your frame.
You might add a small dose of magnesium to see if it alleviates the back pain.
This is a discussion from May https://connect.mayoclinic.org/discussion/extreme-dry-eyes-could-it-be-the-tymlos/

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As someone else pointed out, when you start back up, you might “titrate” up. I started with 4 clicks (double arrows = 40mcg. I did that for 2 days with no side effects, so I moved to 5 clicks. I had mild side effects there, so continued at 5 clicks until those subsided (3 days). Then moved to 6 mcg. I did 2 days each at 6mcg and 7mcg without side effects and then got to the full 80mcg. I’m very small framed, but not having issues with 80mcg. I do understand the logic though that if 80mcg is the right dosage for a 170 pound person, the “full” dose should probably be something less for a 105 pound person.

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Just a small note…some drugs are not body size dependent…they are dependent on the organ targeting function…like the thyroid so sometimes body size can have less to do with outcomes than the drug dosage. Not an expert on Tymlos though.

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I have experienced dry eyes and allergy prone eyes for many years long before Tymlos. Some years ago a colleague recommended an eye compress from the company named Bruner. It has proven to be a terrific product for dry eyes. It ha Velcro straps to hold the compress in place and you microwave the compress for 10 seconds. It is also washable. Though it is pricey at $50, it is worth every Penny. Hope it helps.
Also, I experienced an extremely painful side effect to Tymlos that occurred only one time thank goodness. After a few doses of Tymlos injections, I had severe spasms that traversed up and done my spine for about 15 minutes. It was awful. I take Methocarbamol 750 mg. (Generic Robaxin) for muscle relaxation and changed my nightly dose before the Tymlos injection and waited at least 30 minutes. This worked and that side effect has not recurred. The Optum pharmacist told me that this side effect has been reported previously but by very few individuals.

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Profile picture for osteopatient2026 @osteopatient2026

Are you seeing an endocrinologist or rheumatologist?
The all day headache sounds independent of Tymlos.
Does the Tylenol or ibuprofen help? How much?
I’m not sure why taking a week off would change anything.
Headaches are certainly a side effect…mine were a few hours after injection but got better. Think “too much coffee” …Tymlos can give you a headache from similar bio actions involving your parathyroid/parasympathetic system.

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@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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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 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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Profile picture for bharris202 @bharris202

As someone else pointed out, when you start back up, you might “titrate” up. I started with 4 clicks (double arrows = 40mcg. I did that for 2 days with no side effects, so I moved to 5 clicks. I had mild side effects there, so continued at 5 clicks until those subsided (3 days). Then moved to 6 mcg. I did 2 days each at 6mcg and 7mcg without side effects and then got to the full 80mcg. I’m very small framed, but not having issues with 80mcg. I do understand the logic though that if 80mcg is the right dosage for a 170 pound person, the “full” dose should probably be something less for a 105 pound person.

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@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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