Severe side effects Tymlos.

Posted by vickizuckerman82 @vickizuckerman82, Jan 6 11:57am

I had a severe muscle spasm for only 3 doses of Tymlos. Ended up in ER. Looked like heart attack. Has anyone had this and gone back on Tymlos? Any recommendations of what drug to switch to?

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https://connect.mayoclinic.org/discussion/tymlos-side-effects-ive-encountered/?pg=4
vickizuckerman82, I hope no one would take it again if they had severe muscle spasms. Do you have the labs from the hospital. I'd be curious about calcium levels, pth levels. Mostly because I'd want to try Forteo if Tymlos caused that effect.
Did you have minor spasms before the third injection. How long after the injection did the spasms take hold. How long were you in hospital before they subsided.

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@gently

https://connect.mayoclinic.org/discussion/tymlos-side-effects-ive-encountered/?pg=4
vickizuckerman82, I hope no one would take it again if they had severe muscle spasms. Do you have the labs from the hospital. I'd be curious about calcium levels, pth levels. Mostly because I'd want to try Forteo if Tymlos caused that effect.
Did you have minor spasms before the third injection. How long after the injection did the spasms take hold. How long were you in hospital before they subsided.

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Thanks for the reply. All blood levels were fine. Triponin was slightly elevated but went down to normal . I had no issue with first 2 injections and the spasms happened 10 minutes after the third injection. Lasted about 5 minutes and went away before I got to the ER. Why are you suggesting Forteo specifically? I am seeing my Dr. tomorrow. Thanks for your help.

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Were you on max dose of Tymlos? A number of people here who had bad side effects reported having better luck clicking down the dose from the maximum.

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@vickizuckerman82

Thanks for the reply. All blood levels were fine. Triponin was slightly elevated but went down to normal . I had no issue with first 2 injections and the spasms happened 10 minutes after the third injection. Lasted about 5 minutes and went away before I got to the ER. Why are you suggesting Forteo specifically? I am seeing my Dr. tomorrow. Thanks for your help.

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vickizuckerman82,
I'm starting my third year of Forteo.
Forteo works by increasing both the cells that break bone down and the cells that build bone. Because the bone is remodeled it is the most resilient bone. Other medications work by stopping the process that repairs bone before building on it. Part of the mechansim is the same as Tymlos. It dilates your blood vessels; with less fluid in the vessels the heart pumps faster to keep it circulating. That tachycardia is probably what caused the rise in troponin.
The muscle spasms might be from hypercalcemia. Anyway the timing makes sense as it is most intense in the first ten minutes. And it can be alleviated by taking fluids and a little salt before injecting. The effect is usually gone completely within the first four hours.
Forteo is a little different than Tymlos, mainly in that it is a lower dose of parathyroid hormone.
I suggest considering Forteo as you are not likely to have the same reaction. It doesn't have the preservative that Tymlos users sometimes react to.
There aren't that many drugs.

I'm cautious about Evenity because it models or adds bone instead of remodeling. Evenity is too new and has a cardiac black box.
Prolia models or adds new bone without remodeling. It is unsafe for most to stop taking, and it has a NEW black box for kidney damage.
The bisphosphonates were once the only drug available and have prevented many fractures. They increase bone density collecting older bone by stopping the remodeling process.
I agree with the opinion that it is better to begin with an anabolic medication to build it before trying to preserve it.
I hope you have a productive appointment with your doctor tomorrow and that you tell us all about it.

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@gently

vickizuckerman82,
I'm starting my third year of Forteo.
Forteo works by increasing both the cells that break bone down and the cells that build bone. Because the bone is remodeled it is the most resilient bone. Other medications work by stopping the process that repairs bone before building on it. Part of the mechansim is the same as Tymlos. It dilates your blood vessels; with less fluid in the vessels the heart pumps faster to keep it circulating. That tachycardia is probably what caused the rise in troponin.
The muscle spasms might be from hypercalcemia. Anyway the timing makes sense as it is most intense in the first ten minutes. And it can be alleviated by taking fluids and a little salt before injecting. The effect is usually gone completely within the first four hours.
Forteo is a little different than Tymlos, mainly in that it is a lower dose of parathyroid hormone.
I suggest considering Forteo as you are not likely to have the same reaction. It doesn't have the preservative that Tymlos users sometimes react to.
There aren't that many drugs.

I'm cautious about Evenity because it models or adds bone instead of remodeling. Evenity is too new and has a cardiac black box.
Prolia models or adds new bone without remodeling. It is unsafe for most to stop taking, and it has a NEW black box for kidney damage.
The bisphosphonates were once the only drug available and have prevented many fractures. They increase bone density collecting older bone by stopping the remodeling process.
I agree with the opinion that it is better to begin with an anabolic medication to build it before trying to preserve it.
I hope you have a productive appointment with your doctor tomorrow and that you tell us all about it.

Jump to this post

Thank you so much for all the info. In addition I have Osteogenesis Imperfecta . So it’s complicated but your information is very helpful.

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