Reaction to Tymlos

Posted by annashaffer @annashaffer, Aug 7, 2025

I was on Tymlos shots that I gave myself. I got severe muscle and bone pain. My pharmacist said this was a side effect of Tymlos. Opoids given by doctor pain did not help pain. Pharmacist had to call doctor to get her to listen of cause of pain. Tymlos did things to my body, gritty teeth, fingernails soft like paper peeled cracked, calcium in my blood and abnormal blood results and other parts of my body it wasn't suppose to be in. It has taken me over six months trying to get normal labs and body feeling normal. I now am on prolia

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

Profile picture for 2024tymloshelp @2024tymloshelp

I just finished my first year of Tymlos ( was only on HRT for 5 years prior to this ) so far Tymlos has shown no bone gains on my recent dexa at 12 month mark)
It may have just frozen further bone loss which is good but it cause and improvements as yet . My dr wants me to continue it another year . I’m doing research .
Question for today though is this : I recently started having moderate - sometimes serious upper arm /shoulder/neck pain unexplained . I had a cervical MRI which hasn’t revealed the cause of this pain . I am doing PT and getting occasional massage and taking meloxicam . But it’s been going on for 3plus months . Especially uncomfortable at night .
Don’t know if this is just me aging ( I’m almost 65)
Or what’s causing the neck/shoulder pain since MRI didn’t really show the cause .
Could it be Tymlos ??

Jump to this post

@2024tymloshelp
I was on Tymlos for 7months taking it every day and everything seem fine up to the end
of 7 months and I started having severe hip joint pain on both hips. My doctor said to quit taking it for a week and see if the pain went away ---it did. So then the doctor said to take a half dose which I did but the pain came back. My doctor said I should stop taking it and that's what I did.

REPLY
Profile picture for dmshope @dmshope

@2024tymloshelp
Dear One, Tymlos does not work for everyone and there are various reasaons that can be explored.
First however, did you have bone markers done before therapy? BOne markers can be used to gauge the effectiveness of medication and can be done about every 3 months. If there are no changes in bone markers, then it is reasonable to assume that classification of drugs is not effective for you. ( Hoeveer due to various contributing factors ( inflammation, gut issues, throid issues, kidney function, nutrional depletion or dietary aggravation, steriod use, cancer , high homosystein etc) these also can inhibit medication effectiveness and once those issues are managed then another try at the medicne might work well. Please read 'Great Bones' by K McCormick - and excellent sensitve reference to understand bone disease and its corelation factors. It is also a hopeful book and for that I am most greatly thankful. May you find your path and heal well. Blessings

Jump to this post

REPLY

Thank you for answering my initial inquiry.
I’m so frustrated that my doctor did no bone marker tests when I started Tymlos a year ago. So- I have no idea why the dexa showed no improvement.
Other tests were done and all were normal but no bone marker tests were done prior to starting.
My Dr said to continue the Tymlos for the second year anyway 😖 I’m not satisfied with her direction but since I don’t feel bad on the Tymlos ( other than belly fat )
I am continuing with it. On month 14 now.
She said maybe it is helping bone “ quality” that doesn’t show on dexa scans?
What do you think of that?
Any marker tests I can do to determine bone quality?
And do you know of anybody who improved bone density in dexa in SECOND year of Tymlos ?

REPLY
Profile picture for 2024tymloshelp @2024tymloshelp

Thank you for answering my initial inquiry.
I’m so frustrated that my doctor did no bone marker tests when I started Tymlos a year ago. So- I have no idea why the dexa showed no improvement.
Other tests were done and all were normal but no bone marker tests were done prior to starting.
My Dr said to continue the Tymlos for the second year anyway 😖 I’m not satisfied with her direction but since I don’t feel bad on the Tymlos ( other than belly fat )
I am continuing with it. On month 14 now.
She said maybe it is helping bone “ quality” that doesn’t show on dexa scans?
What do you think of that?
Any marker tests I can do to determine bone quality?
And do you know of anybody who improved bone density in dexa in SECOND year of Tymlos ?

Jump to this post

@2024tymloshelp
I am not a bone doctor but I have not heard of anyone having 'no gains in the first year' and then having 'gains the secodn year' on tymlos. In fact in my case, the second year cause decreased in cortical bone and furhter decrease in bone microarchesture. We are all different - only some people respond in this way.
Please read Great Bones so you can ask informed questions. Please Get a second opionon. I have 3 endocrinolgist on my team.
If you need boen building and tymlos is not working perhaps you can switch to Evenity. I had to fight for that but finally got the docs to prescribe and now I am finally improving. BLessings to yu

REPLY
Please sign in or register to post a reply.