Tymlos Side effects

Posted by lori62yb @lori62yb, 23 hours ago

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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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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