TYMLOS FEEDBACK

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!

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.

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!

Once we stop Tymlos and then go on Reclast, do you know if we can stop taking bone meds? Thanks so much for posting.

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!

I just started last week. I’m very anxious giving self the injections. I started at 4 clicks and see my Dr tomorrow.

That’s a very good question, @susanjohnston!

When I began taking Reclast c. 2011, I thought it was the wonder drug that would keep my OP at bay. However, a few years after what I thought would be my last infusion, I had an undiagnosed compression frax but my DEXA numbers weren’t really much different.

In 2022, I discussed the earlier pain in my back with my rheumatologist who suggested that I might have had a vertebral frax and ordered an x-ray; by that time, I had three of those little buggers. The doc then suggested I try a new treatment - Tymlos. My trials with Tymlos are well documented in other posts on this forum.

After discontinuing Tymlos, because of the many issues, I did a complete year of Evenity, which was uneventful in the adverse reaction category. Immediately following the last injection(s) of Evenity, I had a Reclast infusion and will likely have another in a few months.

In January 2026, I’ll have a DEXA which will tell me if Reclast is holding my gains steady or if another med will be necessary to build bone and remain steady with the gains.

That’s the long answer. The short answer is depending on the results of lab work and DEXA’s, the Reclast might or might not hold the gains we get from Tymlos and Evenity. It’ll be interesting to see what my doc prescribes for me next in the event something is necessary to keep me upright.

As a note, generally there is a “drug holiday” period after a few doses of Reclast, perhaps until a backslide is discovered through testing. From what I was able to learn, the biggest risk with Reclast is the likelihood of spontaneous femoral frax from too many infusions. I decided to take that risk.

Wishing you and everyone a sunny day! Cheers!

I just started last week. I’m very anxious giving self the injections. I started at 4 clicks and see my Dr tomorrow.