TYMLOS FEEDBACK

I recently posted my results after a year on Tymlos. In short, it made a significant difference in my spine (from a T score of -3.3 to -2.6, barely osteoporotic), not so much elsewhere.

For the record, I'm 78 and had a compression fracture at L1 after a trip-and-fall in October 2023. I've done very well with side effects; had a bit of nausea after the shot for an hour or so, so I switched to doing it at bedtime and am now fine. I wasn't crazy about doing the shot every day, but it's not a big deal. The needle is very fine and very short and I usually don't feel anything, sometimes a bit of a sting for a couple of seconds. Basically, you get used to it.

I know what you mean about the whole thing being depressing. I'm also blessed to be in quite good health, but I have various orthopedic problems, garden-variety stuff but nonetheless painful, that have drastically limited my mobility and made it impossible to walk more than ten or fifteen minutes without pain. And yes, it's very depressing.

But that's separate from bone health. If you can manage the cost, I believe Tymlos is worth the inconvenience.

Thank you so much for your feedback. I really appreciate you for getting back to me.

If you search this forum for 'tymlos', you will get more links than you have time to look at. 🙂

I began taking Tymlos at age 65. I am male. My overall spine T-score was -3.3. A year later, it was -2.0. That's a huge difference. So, for me, Tymlos has worked really well. I'm in my second year on it.

I, too, am about to turn 70. I decided, at the tender age of 68, that compression fractures (I've had four since 2017), and the debilitating effects we may suffer from them were riskier than the meds and chose to begin Tymlos, followed by Evenity and then Reclast. For the record, I did not tolerate Tymlos well and was only able to make it to about 9-1/2 months, but I've had Reclast infusions, off an on without any side effects since about 2011, and depending on what my rheumatologist says, I will have another infusion in July/August of 2025. Evenity and Reclast were easy-peasy for me.

Talk to your doc, do research, and decide what's best for you. Remember that we are all different and a med that works for one may not work for all. Listen to your body and advocate for your health. I tried to tell my doc that Tymlos was causing my grief, but he replied with "that can't be, none of that is listed on the website as an adverse reaction." Piffle! Best wishes to you as you make your decisions!

Cheers! Happy Spring!

As njx58 said, there are more Tymlos comments and info here than you'll want. I've been on it only 6 months so no sense yet whether my scores have improved, but to the points about the injections and the cost, I thought the injections were a deal breaker at first, until I watched some videos of how it's done, and spoke with the Tymlos nurse, and it's really no big deal. When I put the needle on the pen everyday and take the cap off I always check to make sure the needle's there; it's too short and thin to see. Could be my vision, but I don't think so 😂. You pinch a roll of belly fat and it just slides right in. In my experience anyway.
The cost can certainly be a problem, but if you have a Medicare plan, you're only responsible for $2000 for the year. Yes, for two months you'll be taking a huge hit, but after that all your covered meds are $0 for the rest of the year. Plus, the Inflation Reduction Act also will allow any Part D beneficiary to make prescription cost-sharing payments in monthly installments. Your insurance co can give you specifics. And if you can't manage that, there are assistance programs that might be able to help. A Tymlos rep should be able to guide you.
One of the things I've learned in this forum is that compared with the other osteo meds, Tymlos seems to produce the best outcomes with the least bothersome side effects overall. It's a tough decision, there's a lot at stake; but if you start and can't tolerate the injections, or the side effects, or you can't afford it, you can always stop.

I keep going back and forth with Tymlos and Reclast. They all have potential adverse reactions. I always have been skeptical of medications, which is crazy since I am a retired RN.
I have had many breaks-shattered wrist, broken back, broken elbow, 2compression fractures, and joint replacements.
Should have started meds years ago. I still am so torn.
I am curious, when you said "tymlos was causing your grief," are you meaning having to do daily injections, or grief as in depression?
Thank you so much for sharing your story.

I was diagnosed with fairly severe osteoporosis at the age of 51 (genetics are a bitch, I had always exersized extensively, taken calcium and vitamin d, eaten healthy). Obviously, for me, not taking meds wasn't an option. After meeting with the bone specialist and a PhD who does many of the clinical trials on osteoporosis meds I opted to go on Tymlos so I could "build up my bone" before going on a maintenance medication. I was on Tymlos for two years, my spinal BMD increased by 16% the first year and about 4% the next year so I was very pleased with the results. My hip increased a little as well. I then followed it up two weeks ago with a Reclast infusion to "lock in the gains" I've made. I had no issues with either. I was very nervous doing the daily Tymlos injections at first, but it comes in a pen and is incredibly simple to do. The first couple of Tymlos injections I felt slightly lightheaded for a few minutes after, the Tymlos nurse noted to stay either laying back or at least seated for at least 15 minutes post injection and that never happened again. I would go with an anabolic bone building medication to first increase your density and then follow it up with a bisphosphonate to protect you from losing more. I will do two more annual Reclast infusions and then go off drugs for several years since it stays in your system for some time (will do bone marker testing to determine when it's time for a next step). Good luck in your journey. Meds can be scary, but breaking bones and compression fractures is terrifying as well. I knew I would be facing that without meds (my mom has broken 16 bones and lost 4 inches of height from compression fractures). Talk to your doctor. I was ready to move forward, but will admit when I first started I almost cancelled each of my treatments after reading horror stories on forums. I'm glad I discussed my concerns with my doc and decided to move forward. Good luck!

Oh, gee, @harryboy7, I'm so sorry to hear about all of your frax! I understand your being torn about taking these evil meds, however, I figured it was meds now or a nursing home at an early age and the latter was not for me; I have too much to do!

Tymlos caused me so many issues that I was unable to complete the last 14 months of treatment. Although I had many issues - nausea that was not controlled by meds, 120+ heart rate, severe and unrelenting shoulder and chest pain that was so frightening it caused me to visit the ER twice within a few months, the feeling of walking on a broken ankle, back pain that made it difficult to walk/move, and a few other problems.

Please don't use my issues as a barometer of how Tymlos works as others have taken it and have had great success. The good news is that if Tymlos causes any adverse side effects, once you stop taking the med, it is out of your system quickly - I started to feel better within days. I had no adverse reactions to either Evenity or Reclast. As an aside, the daily Tymlos injections go pretty well once you get the hang of it.

All the best as you navigate through your story - wishing you a happy ending!

Cheers!

I am 74 and just finishing two years of Tymlos. I did not have side effects, except for temporary fast heartbeat (settled down after about 10 minutes). I started at -4.7 T-score and ended with -4.1. Still serious T-scores, but a good improvement. I will soon start Evenity. So, Tymlos did help.

I have been on Tymlos for two months. I started with one click and increased the dose every few days to full dose. So far so good. The daily injections are easy, but I was worried about that. I will have a Dexa Scan a year from my start date.