I am afraid of trying Tymlos and other drugs due to side effects

Me too, I am not ready to have another treatment after Bonita for 4 months that killed my digestive systems then my primary doctor referred me to an endocrinologist and she wants me a choice of Prolia(Denosumab )or
Teriparatide (Fortio) but I am not ready for any of them. I heard about Tymlos too, but I still afraid of all sides effects.
I am 70 years old now but I am very active.😂🤣❤️

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?

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.

I am so grateful that you took the time to respond with such a thorough explanation. Was it difficult self administering the shots? I am so sorry that you had to deal with a compression fracture after the Fosomax improvement.
Forteo (teriparatide) requires a follow-up drug because it primarily stimulates bone formation, meaning when you stop taking it, there's a risk of bone mineral density loss, so a different medication, usually a bisphosphonate or denosumab, is needed to maintain the bone gains achieved during Forteo treatment and prevent bone loss after stopping the drug; this is due to the mechanism of action of Forteo, which primarily focuses on building new bone rather than inhibiting bone breakdown.
Key points about Forteo and follow-up medication:
Bone building effect:
Forteo works by stimulating osteoblasts, the cells responsible for building new bone, leading to a rapid increase in bone density during treatment.
Limited treatment duration:
Due to potential side effects, Forteo is typically only prescribed for a maximum of 2 years.
Rebound effect:
When stopping Forteo abruptly, the bone turnover rate can shift back towards bone resorption, potentially leading to bone loss if not managed with another medication. Common follow-up drugs:
"After completing Forteo, doctors often prescribe bisphosphonates like alendronate or risedronate, or denosumab, which primarily work by inhibiting bone resorption.

Thanks so much. I am grateful for your response. Were you on Forteo or Tymlos?

I was on Tymlos. It doesn't require refrigeration like Forteo. I kept the pen on my nightstand along with a box of needles.

I've had plenty of needles from getting blood tests, but I never had to use one on myself. The needles screw onto the pen. They are very thin and short. I learned how to rest the needle on the skin and let it naturally go in, rather than me pushing it in. You hold it for 10 seconds, then quickly take it straight out and dispose of it (carefully - they are sharp like a cat's claw.)

@laoaca70 and @susanjohnston I miss Tymlos! I have several spinal fractures and felt safe on it. Doing the shots every day really is no big deal. It just becomes routine. The needle is small.

One advantage to Tymlos is that the dosing is adjustable with clicks on the pen. Full dose is 8 clicks. I had trouble with even a half dose so went down to 1/4 dose and moved up slowly. I landed at 7/8 dose long term and by 18 months had a 19+% gain in spine, 9% gain in hip, going from severe osteoporosis in spine to borderline.

I switched to morning and that eliminated headaches. I also found that moving around rather than resting seemed to help. I have low blood pressure so perhaps movement raised it. At first I had a blood pressure cuff and if my bp was lowish before the shot I hydrated and ate something salty. After while I found that was not necessary.

I have occasional atrial fibrillation and was afriad the rise in heart rate might be a trigger but I didn't have a single episode the entire two years I was on it.

I did 4 months of Evenity afterwards though noone else in my doctor's practice did Evenity after Tymlos. Now I am on Reclast. Hoping to do more of an anabolic. Forteo can now be taken more than two years for certain patients. I didn't do well with Forteo perhaps because it is not adjustable.

All of these meds have some side effects. But for me, fractures have been 1,000 times worse. With Tymlos I lived pretty normally and had a good quality of life. But yeah, some fatigue at times. No fractures since 2021.

Did they ever remove the two-year limit? I know that when I had to get it approved recently after switching Part D plans, one of the criteria was that I could not have been on it for two years. Although, that may just be an insurance rule that hasn't kept up with the latest medical rules.

Forteo's 2 year limit was lifted, in certain situations: https://www.ccjm.org/content/88/9/489
"The revised teriparatide label states that use “for more than 2 years during a patient’s lifetime should only be considered if a patient remains at or has returned to having a high risk for fracture.”

The original 2 year limit was because studies didn't exceed that time.

The black box warning on osteosarcoma has been removed for both Forteo and Tymlos but as far as I know, the 2 year limit remains for Tymlos.

I am going to ask my doctor in early March if I can do more Tymlos because I cannot tolerate Forteo. I have done Evenity and Reclast after Tymlos so far.

The thing is, bone markers showed that Tymlos wasn't effective at 18 months. So these meds' effectiveness may wane and we may need a break before doing more. Again, a discussion I will be having with my doctor. And I will ask how long a break is needed. Right now I have delayed my next Reclast hoping that will make Tymlos more effective, but I am in uncharted territory and do not suggest that for anyone else. And I might not even be able to do more Tymlos.