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

Me too. I am 64 and was just put on Tymlos. My insurance wouldn’t cover Evinity which also comes with a boatload of side effects but is a once a month injection over everyday self injections. I have only had three doses of Tymlos and I administer it (per pharmacist recommendation) at bedtime. I am kept awake by heart palpitations that I find frightening. I am told that this should pass after several doses. I have been active my whole life, but my biggest problem has been that I am small. I never had the bone density to start with that would have given me the benefit of staying off of medication. I am hoping for the best and that I can tolerate the full dose AND keep up the injections daily for this next year. The plan is as follows: one year Tymlos, one year Prolia and then one year Reclast. I’m terrified and will be following this thread to gain insight from others who have actually experienced the treatment over time.

@jhankins there is no harm in backing down to 1/2 or eve n 1/4 dose of Tymlos. The pen has clicks that measure the dose and 8 clicks is a full dose. Many of us have done this and ramped up to give our bodies time to adjust. I got up to 7/8 dose and had excellent gains.

I had better luck with palpitations when I switched to morning. If your blood pressure is low, that can contribute. I bought a bp cuff and stayed well hydrated to keep bp up (salt helps too). Everyone is different!

I was afraid too. I had osteoporosis for many years, was on a cancer med that made bones even worse. My endo did not want to use Reclast or Prolia due to other health issues and I could not tolerate Forteo (I went to an immunologist to try to get on, years ago). I made the mistaken assumption, as did my doc, that Tymlos would be physically intolerable. Net result is several spinal fractures. I would endure any side effect to avoid spinal fractures. I am here to tell you: osteoporosis has no symptoms, but fractures sure do!

When I first went on Tymlos and took the full dose or even half dose, it was impossible. I ended up in the hospital (long story). I stopped, investigate Evenity which was the other option, and went back on Tymlos but this time I starte at 2 clicks out of 8 on the injection pen. When my body got used to that, I went up a click. I got up to 6 clicks and my doc was happy and for the last 9 months have done 7. My DEXA gains have been amazing.

Tymlos causes fatigue for me, and some dizziness. I used to stay in bed but have found getting up and out actually helps. It is worth it!

Afterwards we can do a Reclast infusion but that lasts a long time and we may be able to take a med break with monitoring.

My endocrinologists, the first one who retired after I had been going to him for a couple of years, and the second one who took over my care, ended up keeping me on Forteo for nearly 4 years. I never noticed any side effects, but my bone density as measured by DEXA scans, never improved as much as we hoped it would. Never went out of the osteoporosis range. When my insurance refused to cover the drug anymore a few months ago, my endocrinologist prescribed an IV infusion of Reclast. I hadn’t researched it much, and I didn’t like the idea of taking a drug that would stay in my bones for a year, hopefully improving my bone density, or at least stabilize it. It concerned me that you couldn’t stop the treatment if you experienced side effects. I am very grateful that I haven’t noticed any side effects, and we’ll see what my bone density is like in February. ***Note: I’m about to turn 66. I was diagnosed with osteopenia in my 40’s. I took calcium and vitamin D for years, (still do) & walked a lot for weight bearing exercise. When I was 54 I started taking bio identical estradiol (transdermal) & micronized progesterone (orally), hoping it would help prevent more bone loss. I took them for about 7 years. I think I was first diagnosed with osteoporosis in 2018. The worst my bone density has ever been is -2.8.*** I started taking Forteo in 2020, a few months before I was going to be having spinal fusion surgery because of a collapsed disk. My orthopedic spine surgeon told me after my surgery that he was surprised & pleased by my bone quality in my spine, better than he expected based on my osteoporosis diagnosis. There were no complications or problems during or after my surgery, which was great news. I am sharing this because it seems to show that bone density measurements don’t always show the true quality of our bones. Reassuring to me.

My endocrinologists, the first one who retired after I had been going to him for a couple of years, and the second one who took over my care, ended up keeping me on Forteo for nearly 4 years. I never noticed any side effects, but my bone density as measured by DEXA scans, never improved as much as we hoped it would. Never went out of the osteoporosis range. When my insurance refused to cover the drug anymore a few months ago, my endocrinologist prescribed an IV infusion of Reclast. I hadn’t researched it much, and I didn’t like the idea of taking a drug that would stay in my bones for a year, hopefully improving my bone density, or at least stabilize it. It concerned me that you couldn’t stop the treatment if you experienced side effects. I am very grateful that I haven’t noticed any side effects, and we’ll see what my bone density is like in February. ***Note: I’m about to turn 66. I was diagnosed with osteopenia in my 40’s. I took calcium and vitamin D for years, (still do) & walked a lot for weight bearing exercise. When I was 54 I started taking bio identical estradiol (transdermal) & micronized progesterone (orally), hoping it would help prevent more bone loss. I took them for about 7 years. I think I was first diagnosed with osteoporosis in 2018. The worst my bone density has ever been is -2.8.*** I started taking Forteo in 2020, a few months before I was going to be having spinal fusion surgery because of a collapsed disk. My orthopedic spine surgeon told me after my surgery that he was surprised & pleased by my bone quality in my spine, better than he expected based on my osteoporosis diagnosis. There were no complications or problems during or after my surgery, which was great news. I am sharing this because it seems to show that bone density measurements don’t always show the true quality of our bones. Reassuring to me.

I appreciate this. My rheumatologist did not mention any ability to dose down to adjust to the meds. I saw it here in this group. I would think dosage would be different depending on the size of the individual as well. For instance, I’m just over five feet tall so it seems odd to me I’m given the same dose as someone who is much larger.

@lhankins my doctor, director of endocrinology at a major teaching hospital, now suggests the ramping up method in his practice, just to reassure you. He also said even if I could get to a half dose, it would be helpful.

Effectiveness does increase with dose, even for us small people. I never got to the full 8 (80mcg) clicks but did get to 7 and had excellent gains. My doctor was happy with 6 clicks.

I didn't ask permission to do this but my doctor was delighted that I could get on the med. You will need extra needles and if you are not doing a full dose, you need to keep the medication in the refrigerator so it lasts past 30 days- doctor, company and pharmacist all approved this.

I cannot thank you enough. Last night was the worst night yet. I am switching to mornings and starting with the half dose and see how it goes. I am a bit confused as well with the injection sites. I have read here in this group that people are injecting into areas besides the abdominal area; thighs, arms, etc. Is this correct as far as you are aware? You seem highly knowledgeable in this area and so appreciate you sharing your expertise.

@lhankins I only know from my kid's type 1 diabetes that tummy is the best site for fast absorption. I believe I saw a chart that included thighs for Tymlos but can't find it. I didn't have any problems doing it in my tummy. Studies were done with tummy so the company, pharmacy and doctor often stick with what was done in a study.

You can go down to 1/4 dose (two clicks) if you prefer and if that is absolulely fine, move up. Or you can try a half dose and see how that goes and go down to 1/4 if that 1/2 still gives problems.

I was literally in the ER with a full dose but dafter introducing my body to it slowly, did almost a full dose for almost two years and had huge gains. Good luck!

ps Doing it in the morning, I found that getting up and about helped my side effects, maybe because it raised my blood pressure. Play around with timing, hydration and rest vs activity.