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@susanjohnston

Did you get any response to your question? I am so afraid to take Tymlos. I am also looking for answers to these questions: 1) Did you have any side effects? 2) How long were you on that drug before you saw the improvement? 3) Did you need to switch to a bisphosphonate drug when you finished Tymlos? 4) Was it difficult doing the shots each day?

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Replies to "Did you get any response to your question? I am so afraid to take Tymlos. I..."

Some people have had side effects, no question, but I believe the statistics say that most people don't. Unfortunately, you have to try it before you know which group you're in.

Personally, I had no side effects. After less than a year, I had a 15% improvement, which is probably unusual, and who knows what other factors may have played into that. I'm not done with treatment yet, but I expect that either Fosamax or Reclast will follow. As for the shots, yes, it's weird at first, but soon enough, it's like brushing your teeth.

I was on Tymlos for 4.5 months and I did experience side effects but they did not impact my quality of life greatly. They included elevated heart rate that lasted about 30 minutes, some constipation (which I believe may have also been due to my not drinking enough water throughout the day), and sporadic pain in my extremities which some people attribute to "bone pain". The pains felt like electric "zaps" that came and went very quickly. They were worse some days than others and many days I did not feel them at all.

I was switched to Forteo (generic) due to insurance coverage issues and have not experienced the same side effects at all. I did switch my injection time to the morning from the evening and perhaps that made a difference.

I will be on it for another 18 months to 2 years so will not know how much improvement there is until then. I am unsure of what comes after as my doctor didn't bother to discuss that with me. I had no idea I might need to take something after or that I may need to be on medication for a good portion (or most) of the rest of my life. I plan to have a follow up conversation with my current doctor next month and will also see an endocrinologist for a second opinion in April.

I had a T8 compression fracture last year after being on Fosamax for five years. I had an improvement in my DEXA after two years on Fosamax and it appeared to remain stable for another 3 years but then I had the fracture which was quite unexpected as I had a lumbar T-score in the osteopenia range. Of course, I have no idea what shape my thoracic spine was in. I had an accident in 2017 where I broke a transverse process on T1 and I wonder if the impact somehow contributed to the later fracture. I had a lot of pain in the same area as the fracture but the MRI at the time of the accident didn't show any issues.

I will do whatever it takes to avoid another compression fracture. The pain was terrible and the rehab from the fracture took months as it really affected my back muscles from nerve root compression. It quite honestly messed up my entire year in so many ways.

At any rate, I only have experience with three medications: Fosamax, Tymlos, and Forteo. I am sure others can perhaps chime in with their experiences.