Tymlos side effects I've encountered

Posted by anniesan @anniesan, Oct 2, 2022

Hi. I started Tymlos in February 2022 and about a month after starting it I began experiencing excruciating muscle spasms, esp in upper thighs and feet, neuropathy, as well as debilitating hip, leg, and back pain. My doctor wanted me to try and stay on it for at least a year, but I absolutely could not go on living with the pain I experienced. I stopped taking the Tymlos completely 6 days ago and all my symptoms have subsided. Has anyone else experienced these side effects while on Tymlos?

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windyshores | @windyshores | Oct 27 8:02am

In reply to @yogagirl57 "Actually, I have not done research yet on either one of them. Is that the progression..." + (show)

@yogagirl57 that is what I did. It depends on your DEXA scores. You may not need both. My doctor does not do this sequence in his practice but I read about it in several sources and asked him if I could do it. It seems quite a few people on this forum do both in this order.

I had read that Evenity could follow Tymlos but not the other way around. I read at the time (2021) that Evenity "turbocharged" bone growth so there was less for Tymlos to do. Evenity came out in 2019 so there may be more known now.

Tymlos was the most tolerable for me and I had huge gains. I could not handle a full dose initially so dropped the dose down using the adjustable pen , working with my doctor and moved up quickly. I miss it! I felt protected....

yogagirl57 | @yogagirl57 | Oct 27 9:43am

In reply to @windyshores "@yogagirl57 that is what I did. It depends on your DEXA scores. You may not need..." + (show)

Interesting. My endo told me that both of these drugs were approved 20 years ago. I just looked them up and Tymlos 2022 and Evinity 2019. Strange.

windyshores | @windyshores | Oct 27 9:57am

In reply to @yogagirl57 "Interesting. My endo told me that both of these drugs were approved 20 years ago. I..." + (show)

@yogagirl57 Tymlos was approved April 2017 .

It works in a similar fashion to Forteo which was approved by the FDA in 2002 (slightly different but both work via parathyroid hormone).

Evenity was approved in 2019.

yogagirl57 | @yogagirl57 | Oct 27 11:00am

Good to know!

nwyatt | @nwyatt | Dec 2 6:21pm

I just started Tymlos 4 days ago and have had very bad back spasms. I took 2 full doses but after reading this post I dopped to 4 clicks for the last two days but the spasms are still there. How long does it take to acclimate to this drug? Any suggestions? Should I stop and restart and if so for how long? I was on Forteo with no problems but my insurance had me change to Tymlos for the cost.

gently | @gently | Dec 2 7:26pm

nwyatt, back spasms are an uncommon side effect with Tymlos. It is speculated that the spasms are a response to increased bone turnover.
You should contact your doctor who should be able to get the insurance to switch you back to Forteo. Two clicks might be closer to the Forteo dose. You could pause the Tymlos until you hear from the endocrinologist.
Are the spasms worse just after the injection, worse at night, or sporatic?
Hypercalcemia can cause muscle spasms. Forteo or Tymlos can cause hypercalcemia.

windyshores | @windyshores | Dec 2 7:53pm

I had trouble with 4 clicks at first and went down to 2, then moved up as tolerated.

I am still not clear whether the dosing of Forteo and Tymlos are directly comparable, since although they are similar, they are also different. Forteo is a man-made parathyroid hormone, and Tymlos is a synthetic parathyroid related protein analog. Does this mean Forteo is more potent, since it is a synthetic version of the hormone itself, and therefore the dosing is lower? (I seem to remember Ben Leder MD talking about a double dose of Forteo being very effective.) Does anyone have an explanation for the differences in dosing?

nwyatt | @nwyatt | Dec 3 9:57am

In reply to @gently "nwyatt, back spasms are an uncommon side effect with Tymlos. It is speculated that the spasms..." + (show)

Thanks for the response. The spasms increase as the day goes on. I may not even be related to the Tymlos. I'm going to give it it a little time at 4 clicks and see if it eases.

nwyatt | @nwyatt | Dec 3 9:58am

In reply to @windyshores "I had trouble with 4 clicks at first and went down to 2, then moved up..." + (show)

Thanks for the info. I'm going to give it a little more time at 4 clicks and see if the back pain eases.

nwyatt | @nwyatt | Dec 17 7:08am

I tried to ramp up my dosage starting at 2, then 3, then 4 then 6. Back pain came zooming back so I contacted my doctor and she told me to stop. My question is for anyone who stopped, how long did it take for the side effects to go away? My back is still in a vice but it's only been one day.