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Immediate and severe Tymlos side effects.

Posted by anne905 @anne905, Aug 14, 2024

Has anyone else experienced immediate and severe side effects from Tymlos, with their first injection?

I had a first and last injection of Tymlos in my doctors office a few weeks ago. I received the injection, and then became very dizzy with vertigo as the room seemed to tilt, and my heart rate elevated. I didn’t panic as that was somewhat to be expected. However, then steadily increasing pain started in my abdomen, spread to my lower spine, and extended up my spine into my head. The pain increased in intensity, bordering on intolerable. Then there was the onset of a tension headache like a vice grip on my brain, and tingling, burning in my limbs. I could only lie down and moan at that point. After about 20 - 25 minutes, the pain slowly began to recede.

A immediate determination was made that Tymlos is not for me, and I must go back to Prolia.

I was preparing for my 5th injection of Prolia, and had been experiencing increased muscular pain/ ache/ weakness with each previous injection; with only a nominal DEXA scan change.

This is why my doctor prescribed Tymlos instead to build bone first, before going back on Prolia in the future. I’ve not been able to tolerate any other drugs for Osteoporosis such as Fosamax.

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anne905 | @anne905 | Dec 16, 2024
In reply to @apoind1 "YES I have! I just started Tymlos 12/12/2024 this week. TH and Friday were fine. But,..." + (show)
@apoind1

YES I have! I just started Tymlos 12/12/2024 this week. TH and Friday were fine. But, Tonight [Sun PM], and yesterday [Sat AM]...after taking my shot I had a bad reaction. It felt like a burst of pain hit the small of my back then pulsated up my spine quickly toward my head....shooting off toward my heart causing sharp pain briefly there, while the pulse continued up my spine to my head where I got an immediate strong headache. The pulse and pain stopped elsewhere, and just stayed in my head 15-30 minutes, then that pain was done. Scary.
Note. In each case, I did not have the symptoms until after the shot, I made a quick, brief few bits of exertion. First time... I bent over and played with my dog for 30 seconds. The next day, I merely stood up, went into the kitchen then back to my chair. [10-12 steps] After each bit of exertion, is when the symptoms occurred.

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No, thank you! I stopped Tymlos, because I’m not interested in experiencing negative symptoms like I had with the first injection. It’s not normal, and I was also concerned about longterm challenges, that they aren’t even aware of. I’m too scared to inject myself again, after what I experienced.

REPLY
1 reply
windyshores | @windyshores | Dec 16, 2024
In reply to @anne905 "No, thank you! I stopped Tymlos, because I’m not interested in experiencing negative symptoms like I..." + (show)
@anne905

No, thank you! I stopped Tymlos, because I’m not interested in experiencing negative symptoms like I had with the first injection. It’s not normal, and I was also concerned about longterm challenges, that they aren’t even aware of. I’m too scared to inject myself again, after what I experienced.

Jump to this post

@anne905 did you try a lower dose, changing time of day, hydrating? I was in the ER after my first full dose but by titrating slowly I was able to get up to 7/8 dose and Tymlos rescued me from fractures. I respect your decisions so please forgive me for trying one more time!

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apoind1 | @apoind1 | Dec 17, 2024
In reply to @windyshores "@apoind1 it sounds like you have low blood pressure like me. There are things you can..." + (show)
@windyshores

@apoind1 it sounds like you have low blood pressure like me. There are things you can try: the pen for Tymlos has clicks that measure the dose. Each click is 10mcg. Try going to a half dose, 4 clicks or 40mcg.

I bought a blood pressure cuff and checked my blood pressure prior to injecting and if low, I hydrated and ate salty things and waited a bit before injection, checking blood pressure all the while.

You will of course talk to your doctor but those exertions would maybe lower my blood pressure further. That would explain fast heart beat or feeling faint but the pain rising from base of spine is something your doctor would have to explain.

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On day 5....I figured out that I just needed to stay seated after my shot for about 20 minutes. That kept me from my side effects.
(My blood pressure stays in the normal range). So for me...it was the immediate activity after a shot, that seemed to trigger the instant wave of symptoms...which is an easy fix for me!

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