Protocol after Tymlos

Bisphosphonates stay in the system so we may be able to take drug holidays, with monitoring. I was told they "coat the bones" and that is how they lock in gains. Ask your doctor what the long term plan is. I have also been told we can repeat other meds if needed.

I just finished 2 years of Tymlos. Earlier my endo said he was considering Reclast (annual infusion of strong biphosphenate) or possibly Prolia. Given good results, We went with Reclast, tentatively 2 years. But it all depends on your own condition (for example Evenity is not an option for me) and experience with
Tymlos (I got to osteopenia by the end of Tymlos).

I would ask what options your dr thinks would be possible follow on, while recognizing there is no way to know right now what would be best when the time comes.

I just completed two years of Tymlos. I had only minor side effects including rapid heart rate for about 30 minutes after injection, more pouf in my tummy area, and lethargy at times. The one thing I wish I had done better was to be more consistent with calcium and vitamin D. I went from osteoporosis to osteopenia, although I don't have any BMD measurements from the same machine due to moving around. My doctor just put me on Reclast. I got an infusion within a week of stopping Tymlos. In two years I will get another hip/spine BMD test. Then, if all has gone as expected, I'll do three more Reclast infusions spaced 18 months apart. I felt pretty bad the day after the infusion but ok after that. Build as much bone as you can while on Tymlos. Vitamins and weight-bearing exercise are important I think.

Can I ask what your T-scores were before and after Tymlos. I understand it is two different machines, but it’s still interesting to know. I’m on month 2 of teraparatide!! Good to hear the Reclast didn’t bother you too much!

I will be off my 2-year protocol with Tymlos in July so need to consider my next plan of action. I’m a bit concerned with Reclast because it’s in ur system for a year and if there are side effects I can’t just stop from day to day. How are you feeling? What did ur numbers look like before starting Tymlos and how much improvement did u have. As of Nov, I had an 11% gain in my spine, will have another in July. Thanks for the info.

I had to look through all my old records to try to figure out the change that probably occurred due to Tymlos. Almost all of my readings are from different doctors and different labs, which may or may not be comparable. Every lab seems to present the data in different ways, and some labs provide very little information. The most comparable numbers I could find in my records indicated that in 2017 my hip BMD was 0.744 and my spine BMD was 0.879. I started Tymlos in 2022. I do not have good data for the time between 2017 and 2022. In 2024, after two years on Tymlos, the hip BMD was 0.8175 (average of several measurements) and the spine was 1.064. I calculate the percent change in these BMD readings as +10% for the hip and +21% for the spine. I'm not an expert on this, so I wouldn't want anyone to make a life decision based on my calculations. Nevertheless, I understand the interest in getting information, which we all want more of! I compared BMD instead of T or Z scores because the BMD is what is actually measured.

Most of us are used to using T-scores, but it’s all relative and the BMD is actually what is measured and the T-scores based on anyway:). Who knows how much you lost between 2017 and 2022, and the difference attributed to different machines, but regardless of that I’d say you had very positive results!!! Thanks for sharing that.

After two days following the infusion, I have felt completely fine. My doctor told me to expect that I would have flu-like symptoms for a day or so after the infusion, and then nothing after that. So far she seems to be correct. I only felt really terrible on the day after the infusion. One day of discomfort seems to me to be a small price to pay for a long period of not having to do anything for my treatment (other than weight-bearing exercise and vitamins). Good luck to you as you make your decision.

Thank u for ur reply. It’s great to hear that you are doing well and only a couple of days of discomfort after the infusion. I really have to consider my next move. It’s coming quickly and I need to have a plan so I’m without something to maintain my gains. My cardiologist who runs all my bloods wants me on bioidentical hormones because my counts are pretty depleted…he feels they will help with my bone density. I’m considering giving them a try but I want to make sure I don’t lose any of my gains. Always decisions to make on this journey.