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?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 27, 2023
In reply to @aladdin1 "Hi, Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10..." + (show)
@aladdin1

Hi,
Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10 mins. Has anyone else had this issue? Should I stop taking it?
I am 56 years old and have a good tolerance for pain, but last night was unbearable.
Thanks for any thoughts.

Jump to this post

@aladdin1, please talk with your doctor before discontinuing medication. I'm sorry to hear that you're experiencing such unbearable pain. I think you might appreciate reading some of the tips shared in these related discussions:
- Tymlos side effects I've encountered: https://connect.mayoclinic.org/discussion/tymlos-side-effects-ive-encountered/
- Has anyone been using Tymlos?: https://connect.mayoclinic.org/discussion/tymlos/

Fellow members like @artscaping @georgette12 @tricia225 @kathleenintexas @migizii @kilh may have some thoughts to share about managing side effects to help get you through the night.

REPLY
tricia225 | @tricia225 | Mar 28, 2023
In reply to @aladdin1 "Hi, Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10..." + (show)
@aladdin1

Hi,
Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10 mins. Has anyone else had this issue? Should I stop taking it?
I am 56 years old and have a good tolerance for pain, but last night was unbearable.
Thanks for any thoughts.

Jump to this post

Dial it back. I started back on (after a 2 week holiday bc this stuff is nasty, but it works) and clicked two clicks for a week, then three clicks. I am up to 5 clicks. That said, I am looking to switch to Forteo because its been around a lot longer and it can be injected into the thigh. I've also heard less side effects. Only drawback is that it has to be refrigerated and I am doing a lot of travel this year. That said, I'm sure there are TSA approved carriers.

Try dialing it back and restarting. Your body needs to acclimate. Not sure why the docs don't tell us this. Good luck to you.
Trish

REPLY
1 reply
aladdin1 | @aladdin1 | Mar 28, 2023
In reply to @tricia225 "Dial it back. I started back on (after a 2 week holiday bc this stuff is..." + (show)
@tricia225

Dial it back. I started back on (after a 2 week holiday bc this stuff is nasty, but it works) and clicked two clicks for a week, then three clicks. I am up to 5 clicks. That said, I am looking to switch to Forteo because its been around a lot longer and it can be injected into the thigh. I've also heard less side effects. Only drawback is that it has to be refrigerated and I am doing a lot of travel this year. That said, I'm sure there are TSA approved carriers.

Try dialing it back and restarting. Your body needs to acclimate. Not sure why the docs don't tell us this. Good luck to you.
Trish

Jump to this post

Thank you for the reply. Good luck to you as well.
Last night was still difficult, but not excruciating. Hopefully it’ll get easier soon.

REPLY
Moderator
Amanda Roe | @amandajro | Mar 29, 2023
In reply to @aladdin1 "Hi, Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10..." + (show)
@aladdin1

Hi,
Yesterday I took my third shot of Tymlos. I had severe back pain for 5-10 mins. Has anyone else had this issue? Should I stop taking it?
I am 56 years old and have a good tolerance for pain, but last night was unbearable.
Thanks for any thoughts.

Jump to this post

Hello @aladdin1. I am sorry you have been experiencing back pain following your third shot. I wanted to help you connect with others who have experienced side effects from Tymlos so you will notice I have moved your post here:
- Tymlos side effects I've encountered: https://connect.mayoclinic.org/discussion/tymlos-side-effects-ive-encountered/

I see that a few members have joined you already, so will let you connect.

REPLY
1 reply
bruceandruth1970 | @bruceandruth1970 | Mar 30, 2023
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

My dr wants me to go on Evenity. Have you had your bone density test yet. I would be interested in knowing what you found out.
Also wondering if you were on Tymlos before Evenity.
Thank you for your help.

REPLY
aladdin1 | @aladdin1 | Mar 30, 2023
In reply to @amandajro "Hello @aladdin1. I am sorry you have been experiencing back pain following your third shot. I..." + (show)
@amandajro

Hello @aladdin1. I am sorry you have been experiencing back pain following your third shot. I wanted to help you connect with others who have experienced side effects from Tymlos so you will notice I have moved your post here:
- Tymlos side effects I've encountered: https://connect.mayoclinic.org/discussion/tymlos-side-effects-ive-encountered/

I see that a few members have joined you already, so will let you connect.

Jump to this post

Thanks so much!

REPLY
srimli | @srimli | Apr 10, 2023

Has anyone experienced low sodium levels as a result of Tymlos?

My story: I began Tymlos in late Dec 2022. I tolerated the shots well. Or so I thought. After 60 doses, my doctor did follow-up blood work and found that my sodium had fallen to 129 [it was normal before I began Tymlos]. This is the first time my sodium has been out of normal range, ever. I began to feel unfamiliar symptoms starting a few days before the blood draw: headache, nausea, loss of appetite, lethargy, drowsiness, fluffy-headed. After the lab results came back, it was clear that my symptoms were due to low sodium. Since I had made no changes to my diet or meds (I don't take any except vitD3 and calcium) my doctor thought Tymlos was the likely culprit and took me off it immediately. My symptoms, quite brutal, continued for 5 days beyond stopping Tymlos before resolving completely. My sodium level, though, took nearly a month to normalize. All I did was get off Tymlos; I didn't take any meds or make any dietary adjustments.

My doctor is convinced that this episode was due to Tymlos and doesn't want me to get back on it. This was his first experience of Tymlos causing fallen sodium and he has reported it to the FDA.

[Aside: the doc monitored a host of metabolic markers weekly while watching my sodium. A few others were also off, e.g. my alkaline phosphatase shot up, so did a couple liver markers. All these were normal before I entered the Tymlos tunnel, and are all back to normal now.]

I was wondering if the community knows of other instances of this side effect of Tymlos.

Thanks.

REPLY
1 reply
candy209 | @candy209 | Apr 11, 2023
In reply to @srimli "Has anyone experienced low sodium levels as a result of Tymlos? My story: I began Tymlos..." + (show)
@srimli

Has anyone experienced low sodium levels as a result of Tymlos?

My story: I began Tymlos in late Dec 2022. I tolerated the shots well. Or so I thought. After 60 doses, my doctor did follow-up blood work and found that my sodium had fallen to 129 [it was normal before I began Tymlos]. This is the first time my sodium has been out of normal range, ever. I began to feel unfamiliar symptoms starting a few days before the blood draw: headache, nausea, loss of appetite, lethargy, drowsiness, fluffy-headed. After the lab results came back, it was clear that my symptoms were due to low sodium. Since I had made no changes to my diet or meds (I don't take any except vitD3 and calcium) my doctor thought Tymlos was the likely culprit and took me off it immediately. My symptoms, quite brutal, continued for 5 days beyond stopping Tymlos before resolving completely. My sodium level, though, took nearly a month to normalize. All I did was get off Tymlos; I didn't take any meds or make any dietary adjustments.

My doctor is convinced that this episode was due to Tymlos and doesn't want me to get back on it. This was his first experience of Tymlos causing fallen sodium and he has reported it to the FDA.

[Aside: the doc monitored a host of metabolic markers weekly while watching my sodium. A few others were also off, e.g. my alkaline phosphatase shot up, so did a couple liver markers. All these were normal before I entered the Tymlos tunnel, and are all back to normal now.]

I was wondering if the community knows of other instances of this side effect of Tymlos.

Thanks.

Jump to this post

Thank you for sharing your journey with tymlos. I hope you continue to improve. I am about to start it and am concerned. I already have issues with low sodium levels. I am glad your doctor reported this to the fda. I’ll ask my doc about it as well before starting.
Are you switching to forteo?
Best wishes to you
Candy

REPLY
1 reply
srimli | @srimli | Apr 11, 2023
In reply to @candy209 "Thank you for sharing your journey with tymlos. I hope you continue to improve. I am..." + (show)
@candy209

Thank you for sharing your journey with tymlos. I hope you continue to improve. I am about to start it and am concerned. I already have issues with low sodium levels. I am glad your doctor reported this to the fda. I’ll ask my doc about it as well before starting.
Are you switching to forteo?
Best wishes to you
Candy

Jump to this post

Thanks, Candy. No, not getting on Forteo -- my doctor thinks it is equally risky for me. He has recommended Evenity.

Warm wishes on your Tymlos journey. I hope, unlike me, your sodium levels stay unaffected. Do let me know how it goes.

REPLY
rajmayo22 | @rajmayo22 | Apr 12, 2023

I have been taking Tymlos for the past six months. Recently, I had blood work done and and my calcium level 18 hours after the last injection was little above the normal range. At 3 months, calcium was within the normal range of 5-10. (High calcium is one of the side effects of Tymlos.) My endo doc suggested to cut down dairy products intake but that also reduces protein intake. Has any Tymlos users faced this dilemma? If so, what did you do? (I called Radius and the consultant rep had no suggestion.) Thanks

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