Connect
← Return to Reaction to Tymlos
Discussion
Comment receiving replies
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 ??
Replies to "I just finished my first year of Tymlos ( was only on HRT for 5 years..."
@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
@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.
Connect
@2024tymloshelp,
Tymlos was prescribed for me beginning in late-2022. By February/March of 2023, I was having the same types of pain you are describing, along with other adverse reactions.
The one that got me the most was the pain across my upper shoulders, chest, back and neck. The pain was so excruciating that I couldn’t take a deep breath - no pain relievers (Tylenol/Advil) would give me even a minute of relief. And, I was never sure if the pains were worse at night or if that was when the world was quiet and I just noticed them more.
I spoke with my rheumatologist who said that he didn’t feel Tymlos was causing my symptoms. So I had appointments/treatments with physical therapy, pain management, a spine specialist, a cardiologist, and two visits to the ER in the middle of the night. The only doc that came up with any reasoning for the pain was the spine specialist who said I had some mild arthritis in my neck. WHAT!? These were not mild anything!
Finally, in July of 2023, after about 9-1/2 months of Tymlos, I convinced my doc that it WAS the med causing the problems and told him I wanted to discontinue it. He agreed. Within days after ceasing the Tymlos, my pains (and other issues) disappeared.
So there you have it! I have learned through this board that we are all different and what works for one of us may not work for others.
With your doc’s blessing, you may want to try stopping Tymlos for a week or two to see if your pains follow suit.
I wish you the absolute best in your search for the culprit. You’ve actually made me feel a little less crazy ;).
Peace to all on this solemn day of remembrance.