Immediate and severe Tymlos side effects.

No, thank you! I stopped Tymlos, because I’m not interested in experiencing negative symptoms like I had with the first injection. It’s not normal, and I was also concerned about longterm challenges, that they aren’t even aware of. I’m too scared to inject myself again, after what I experienced.

@anne905 did you try a lower dose, changing time of day, hydrating? I was in the ER after my first full dose but by titrating slowly I was able to get up to 7/8 dose and Tymlos rescued me from fractures. I respect your decisions so please forgive me for trying one more time!

On day 5....I figured out that I just needed to stay seated after my shot for about 20 minutes. That kept me from my side effects.
(My blood pressure stays in the normal range). So for me...it was the immediate activity after a shot, that seemed to trigger the instant wave of symptoms...which is an easy fix for me!

Hi Anne905,
Evenity didn't work for me either and now that I'm on my second pen of Tymlos, am encountering side effects that suck the joy out of living. Have you found another course of bone building that you can share?
Thanks!

I started Tymlos self injections 2 months ago and so far dizziness has been my major side effect. I still have complications from my fall (6 months ago) where I fractured 2 lumbar vertebrae…..pain in lower back is constant….even with weekly PT. Lately, I’ve developed pain in my right groin/glute - don’t know yet if it’s sciatica or if it’s kidney stones or if it’s even related to Tymlos. Waiting for MRI results.

@dustyskeleton
I was afraid of Evenity side effects so I went with Tymlos…am finishing up my second pen as well. I’m questioning if my constant back pain and now groin/glute pain is from Tymlos or kidney stones or caused by my fall over 6 months ago where I fractured 2 vertebrae in my lumbar.

@bebagar Most likely your vertebral fracture due to nerve root compression from the fracture. I had a vertebral fracture in December 2024 and kept a log of my pain levels for months. It took over a year before my pain diminished to a tolerable level. At 2 years plus my pain is minimal. Most days I have no pain and if I do, it’s at a level 2 or 3 (out of 10) and it’s gone the next day. I have been doing Dr. Stuart McGill’s “big three” back exercises for two years and work out five to six days a week.

I was on Tymlos for many months, and started getting severe abdominal/bladder pain. I had warned the nurse practitioner that ran the clinic that I had a strong family history of kidney stones, but she just kind of blew it off. After a while of having the pain, I stopped the Tymlos on my own. It took 9 painful months of seeing doctors (even a urologist) before the kidney stone was diagnosed, because the location of my pain was not in the "usual" location for kidney stones. The urologist offered to refer me for pelvic floor therapy, because he didn't know anyone who didn't benefit from that. I cried when I left his office. The next night, I ended up in the ER with severe pain, and the stone was finally diagnosed - it was a large stone that was trapped in my kidney. I had a surgical procedure where they went up the urethra, broke up the stone with a laser, and then pulled the bits of the stone out. The whole thing was an awful experience. I will never take any of those meds again - I will take my chances. A friend of my Mom developed the jaw necrosis from one of the bisphosphonate drugs. I know a lot of people have very fragile bones and have to take the medications. My bone density is a little low, but now critically low, so I will not take any of these meds at this time. Everyone is different, and if you need the meds, you have to take them.

@windyshores j just want to say thank you for the tips and information. I’m sorry you and others have gone through such a horrible time to identify what may work and what doesn’t. I’ll add you are all brave in not only trying, but trying other options as well! I have severe osteoporosis in my spine and I’m 58 and a bit scared. My doctors all strongly encourage me to take Forteo shots but I want them to first tell me what genes/gene variants are associated with the bad reactions. The reason- I took Tamoxifen for breast cancer in my 40’s and would cry in pain quite often at night, it felt like deep bone and joint pain. I also many other had other adverse reactions but my point is that I learned years later people with one or more of one of the genetic variants I have do not metabolize Tamoxifen well. So I basically went through hell and the only thing I have to show for it is severe osteoporosis. So who knows what a bone drug may do. What I plan to do is beg the drug companies to study the genes involved and which variants cause an issue so we can simply test for those and find out what drug we may do best on. I don’t know why drug companies, doctors or researchers don’t feel this is important and could help direct the right drug to the right people. I will say that doctors caution that just because you have a genetic variant and/or show you may be a poor metabolizer of a specific drug doesn’t mean that you will react badly. But my pharmocogenomics test was 100% aligned with all of my negative Rx experiences . Soooooo