Reaction to Tymlos

Posted by annashaffer @annashaffer, Aug 7 12:57pm

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

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Has anyone else reacted to tymlos with these side effects ?
I am trying to decide if I should take it or evenity. So hard to decide. I am very vulnerable to side effects. I took Prolia because my doctor told me that it had less side effects than any of the medications. I had severe bone and muscle pain. Anxious to hear your experiences. thank you

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Hi @hlp123. I was on Tymlos for almost a year and did have some side effects, but they weren't severe - fatigue and joint pain. I took Fosamax intermittently and then one year of Evenity prior to Tymlos. I had no discernible side effects from Fosamax and Evenity. I then had my first Reclast infusion in May 2025 and have had no side effects thus far.
Your medical history is a determining factor in what medication may be the best choice for you. I will say that I don't understand why your doctor told you that Prolia has less side effects than the other medications. It's always good to do your own research, so I'm glad you came here. You will find a potentially overwhelming amount of information! Just remember that many people come here to explore side effects and potential problems which are very valid concerns. It's always good to balance that by searching for positive feedback. One thing to explore with your doctor is what sequence of medications they would want to follow and why. Another is whether or not you can afford the medication or would be eligible for financial assistance.
I could go on, but I think this is a good starting point!
Best wishes to you moving forward.

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Thank you so much for your response. I have had an hyperparathyroid adenoma removed in 2001, and the endocrinologist have decided that I should not take tymlos because of this. I seem to be very vulnerable to side effects. I also think I must be immuncomprimised because I got Shingles twice (six months apart) after taking both of the Shingrix vaccines.
Please excuse my spelling. I need to make a decision soon and I am cautious of evenity. I did manage to get through a year of reclast after a year of Prolia, but I am not anxious to take any of these medications. Thank you so much. Lets continue to help each other and support each other. My sacral fractures are not healing and my ribs have fractured without impact on four occasions over the length of 10 years. I am fearful of the "Stroke warning" with evenity. I will probably end up taking Reclast.

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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 ??

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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 ??

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@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.

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Profile picture for beanieone @beanieone

@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.

Jump to this post

Yes peace to all on this solemn day .

Thank you SO much for your reply and input to my Tymlos question.
This neck-shoulder pain I do think might have something to do with the drug but of course no one knows
Glad to hear that maybe it’ll go away after I’m done with the drug .
I’m still struggling whether to continue into year#2 on it since my dexa showed no improvement after 12 months
Can I ask what you did next after Tymlos ?

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I’m about 99-44/100% sure that Tymlos caused my issues. The pain was relentless - no sleep for me…

Immediately after discontinuing Tymlos, I was approved for and began Evenity (which was prescribed for 12 months); I had no issues with it. Post-Evenity, I had a Reclast infusion (my 7th or 8th), also without problems.

While I had an amazing DEXA score improvement from 2022 to 2024, it is unknown whether the gain was due to the partial dose of Tymlos, the Evenity or a combo of both.

Hope this helps. Cheers!

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