1. < Osteoporosis & Bone Health

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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

georginas | @georginas | Jul 15 9:10pm
In reply to @gwpitt "I am a physician on tymlos for 6 months. Three months ago, I began having back,..." + (show)
@gwpitt

I am a physician on tymlos for 6 months. Three months ago, I began having back, knee, shin and ankle pain. Prior to that time, I was extremely active and these symptoms have reduced my activities by about 50%. I have seen a podiatrist, orthopedic surgeon, neurologist, internist and rheumatologist. I do have mild L4 foraminal stenosis and knee chondromalacia, but these pains are more frequent, severe and extensive than the orthopedic changes.

I am considering stopping tymlos for 1 month to see if it is the cause of these symptoms. I would be interested in hearing if others have experienced something similar to this.

Jump to this post

Yes, I am 10 weeks into Tymlos treatment and two days ago began feeling pain in my knees and ankles, then today, throughout my body. I am very active, but frankly, today, felt very depressed and so tired. I know you posted a year ago, but I'm curious to know if you continued Tymlos or switched to another drug. I've been on Forteo, which wasn't this bad, Prolia, which caused a terrible jaw infection, Atelvia, which seemed to work, but I have Barrett's esophagus, so they wanted me to get off that, Fosamax, which I couldn't tolerate, and now this. I'm afraid of Evenity, frankly. Any insight would be very much appreciated. Thank you!

REPLY
2 replies
gently | @gently | Jul 20 10:17am
In reply to @gwpitt "I am a physician on tymlos for 6 months. Three months ago, I began having back,..." + (show)
@gwpitt

I am a physician on tymlos for 6 months. Three months ago, I began having back, knee, shin and ankle pain. Prior to that time, I was extremely active and these symptoms have reduced my activities by about 50%. I have seen a podiatrist, orthopedic surgeon, neurologist, internist and rheumatologist. I do have mild L4 foraminal stenosis and knee chondromalacia, but these pains are more frequent, severe and extensive than the orthopedic changes.

I am considering stopping tymlos for 1 month to see if it is the cause of these symptoms. I would be interested in hearing if others have experienced something similar to this.

Jump to this post

gwpitt,
high blood calcium can cause joint, bone and low back pain. PTH can cause sustained high blood calcium in some patients.
These pains were signaled in the clinicals.
The other known advantage of PTH therapy is the increase in chondrocytes in the joints.
You are at six months. That is when fewer patients quit Tymlos because of bone pain. It is also a great month to take a month off. A little holiday will lower the osteoclasts which are, usually at this point, beginning to close the distance in numbers between osteoclasts and osteoblasts.
I often think the 80mcg dose is a little high for most of us. And I endorse the windyshores method.
If you are having bone markers one before quitting and one a month after resumption would be rewarding for you and interesting for me.
I'll bet though that you'll notice the difference after one day. And I hope you keep us abreast of your progress.
Forteo is a lower dose, though. With Forteo I had a month off and was greatly pleased by the numbers and think the anabolic window could be expanded in the very way you are thinking of proceeding.

REPLY
dooshie | @dooshie | Jul 21 2:04pm
In reply to @georginas "Yes, I am 10 weeks into Tymlos treatment and two days ago began feeling pain in..." + (show)
@georginas

Yes, I am 10 weeks into Tymlos treatment and two days ago began feeling pain in my knees and ankles, then today, throughout my body. I am very active, but frankly, today, felt very depressed and so tired. I know you posted a year ago, but I'm curious to know if you continued Tymlos or switched to another drug. I've been on Forteo, which wasn't this bad, Prolia, which caused a terrible jaw infection, Atelvia, which seemed to work, but I have Barrett's esophagus, so they wanted me to get off that, Fosamax, which I couldn't tolerate, and now this. I'm afraid of Evenity, frankly. Any insight would be very much appreciated. Thank you!

Jump to this post

I just completed a 2-year protocol with Tymlos and my Dexa Scan has shown repeated gains in my spine. I did have a couple of side effects but nothing that caused me to consider quitting. I did notice pain in my ankles and feet but that didn’t begin till over half way thru my protocol and now that I am finished, ankle pain has subsided quite a bit. I know the pain can become difficult at times, but the benefits from this med seems to be really good for most women. I often wondered if the pain was from bones being rebuilt…I’d have occasional pain in my ribs, wrists, hips and lower back. Now any discomfort is likely from normal degeneration from age and my active lifestyle.
Hang in there and keep us posted. 🌹 Rose

REPLY
activebcgal | @activebcgal | Aug 18 7:48pm
In reply to @awfultruth "I suggest looking at the book Back Mechanic by Stuart McGill. After nearly 50 years of..." + (show)
@awfultruth

I suggest looking at the book Back Mechanic by Stuart McGill. After nearly 50 years of on and off low back/hip spasms and pain I was better in 2-3 days of starting to follow his approach. He helps you identify triggers for back pain and how to avoid those triggers. And much more. Totally worked for me. Not saying my problem was the same as yours but his approach is widely applicable. He has been interviewed many times on youtube and so on but his book really lays it out. BTW a major source of my various muscular-skeletal type problems came from extreme stretching as a teenager.

Jump to this post

I recommend the book Back Mechanic as well. The approach makes sense to me and I'm making a lot of progress by following the advice. The book sits on my coffee table and I refer to it often.

REPLY
bcstephens | @bcstephens | Aug 18 8:03pm

I completed 2 years of Tymlos this past July and had great success with it. It improved my t-scores quite a bit. I did experience some mild but annoying lower back pain for probably about a year after starting it. I had to modify the exercises I did so I didn’t further aggravate it. After a year, the pain went away. I’m now on Evenity and haven’t had any issues.

REPLY
yogagirl57 | @yogagirl57 | Oct 26 8:50am
In reply to @ssapp1 "@windyshores - That is funny. Yes, it worked well, haven’t had a bone density screen since..." + (show)
@ssapp1

@windyshores - That is funny.

Yes, it worked well, haven’t had a bone density screen since going on Evenity, but I will have one in Feb 2023. Where I typically get my scan is all booked out. Anxious to see if I gained bone density.

Jump to this post

@windyshores How were your results from your Feb. 2023 Dexa (if you don't mind me asking)

REPLY
1 reply
windyshores | @windyshores | Oct 26 2:33pm
In reply to @yogagirl57 "@windyshores How were your results from your Feb. 2023 Dexa (if you don't mind me asking)" + (show)
@yogagirl57

@windyshores How were your results from your Feb. 2023 Dexa (if you don't mind me asking)

Jump to this post

@yogagirl57
spine -2.5 (from -3.7)
hip -2.9 (from -3.3)
femur neck -3.6 (from -4.1)

REPLY
yogagirl57 | @yogagirl57 | Oct 26 5:07pm
In reply to @georginas "Yes, I am 10 weeks into Tymlos treatment and two days ago began feeling pain in..." + (show)
@georginas

Yes, I am 10 weeks into Tymlos treatment and two days ago began feeling pain in my knees and ankles, then today, throughout my body. I am very active, but frankly, today, felt very depressed and so tired. I know you posted a year ago, but I'm curious to know if you continued Tymlos or switched to another drug. I've been on Forteo, which wasn't this bad, Prolia, which caused a terrible jaw infection, Atelvia, which seemed to work, but I have Barrett's esophagus, so they wanted me to get off that, Fosamax, which I couldn't tolerate, and now this. I'm afraid of Evenity, frankly. Any insight would be very much appreciated. Thank you!

Jump to this post

I'm just curious because my Endo just recommended both Tymlos and Evenity and wants me to choose. What are your fears about Evenity?

REPLY
1 reply
windyshores | @windyshores | Oct 26 5:46pm
In reply to @yogagirl57 "I'm just curious because my Endo just recommended both Tymlos and Evenity and wants me to..." + (show)
@yogagirl57

I'm just curious because my Endo just recommended both Tymlos and Evenity and wants me to choose. What are your fears about Evenity?

Jump to this post

@yogagirl57 why not do Tymlos and then Evenity?

REPLY
1 reply
yogagirl57 | @yogagirl57 | Oct 27 7:41am
In reply to @windyshores "@yogagirl57 why not do Tymlos and then Evenity?" + (show)
@windyshores

@yogagirl57 why not do Tymlos and then Evenity?

Jump to this post

Actually, I have not done research yet on either one of them. Is that the progression - Tymlos then Evinity?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.