Looking ahead after Tymlos: Reclast, Evenity or HRT?

I feel the same as you about the Reclast. I've had one infusion and waiting on another that I really don't want to take. I too can't find any useful information on the drug but I'm skeptical.

Did your infusion go well? Why are you hesitant to take another? I hate to be a "noncompliant" patient, but I'm leery of any med that's enough to last a full year. Windyshores posted that it isn't chemo and he/she has been on this site for some years gathering info, so that's good to know. I guess it's really the duration that bothers me.

After having spinal fusion my and severe osteoporosis my surgeon recommended I get on Tymlos. I had the same problem with Tymlos including fast pulse, heart rate and headache issues. My Endocrinologist recommended Forteo. After 5 months on Forteo I was dealing with headaches and was considering getting off that also. I read in here about a study where patients took Forteo first thing in mornings and the findings were that it was more effective in bone growth than the others in the study group. As a last resort due to headache issues with Forteo I gave the morning injections a try. The headaches immediately went away. I was considering getting off Forteo until I tried the morning injections solution. I have now been on Forteo for 5 months and feel like I may be able to make the two year time frame. Best of luck.

I had the same experience with Tymlos. Headaches and side effects in general were better when I switched to morning.

There is always the option of lower dose with Tymlos if anyone cannot tolerate Forteo.

I too concerned about Reckast, possible debilitating side effects including osteonecrosis of the jaw. I am on Tymlos for nine months. My forearm bone density has decreased significantly. This worries me. Dr. McCormick suggested Reclast. I’m fearful of this medication. Wondering what my other options are. Any suggestions from our knowledgeable group members most appreciated! Thank you.

@kaa1 jaw necrosis is pretty rare, according to my doctor and online sources, and the recommendation is to use Reclast for no more than 3-5 years to avoid it and atypical femur fracture. Cancer patients on high doses and people with certain preexisting dental issues are apparently more at risk.

Are you saying your bone density got worse on Tymlos? Are you going by the DEXA? If, say, -2.5 becomes -2.1 that is an improvement. Did your score go up or down?

So you have to stop Tymlos? Did your spine or hip improve? Forearm is mainly cortical (as is the hip) and Tymlos is best for trabecular bone (spine). So many of us have dramatic gains in spine but not in cortical sites. How is your spine?

Your options after Tymlos are a bisphosphonate (oral or infused) and, possibly, Evenity (my doctor says there is no data on this but I did do it after Tymlos, and many on this forum are).

No matter what you do, Reclast or possibly Fosamax would be needed to lock in gains. Many of the people I know do really well on Reclast in terms of side effects, but the people who post tend to be having side effects. You need to hydrate well and can ask for an hour long infusion. First time, something like 40% have an "acute phase reaction" with fluish symptoms and even fever but that only lasts a short time. It tends to happen only the first time, and that is what happened with me.

Here is an interesting piece of info on CTX and bisphosphonates: I am trying to use CTX to minimize my infusions...

"It measures the C-terminal telopeptide (CTX) value, which depicts the level of octapeptide fragment released due to osteoclastic bone resorption from type I bone collagen.[36] Its levels are related to the number of osteonecrotic lesions, stage of disease, and bone turnover index.[37] A lower value represents a high-risk patient with suppressed bone turnover and reduced healing capacity. C-terminal telopeptide less than 100 pg/ml equals high risk, 100 to 150 pg/ml equals moderate risk, and greater than 150 pg/ml equals minimal or no risk."

kaa1, the decrease in forearm density may not be significant for fracture risk. "[M]eta-analysis showed a neutral effect on forearm and wrist fractures overall" from the loss of cortical bone density with anabolic drugs I'm not that fond of meta-analysis, but here's the link. https://www.sciencedirect.com/science/article/pii/S8756328218303600
There is speculation that the decrease in cortical bone density with anabolic medications for osteoporosis is the effect of initial bone remodeling. Nine months would be too soon to see the end density results with Tymlos.
In addition, bone strength isn't measured by density alone. I have the vague idea that your wrists might be at greater risk, but can't remember any links.

Thank you for taking the time to reach out and share your knowledge. I had a DEXA eight months after starting Tymlos and my lumbar improved significantly, from -3.9 to the -3.1. That’s great news. L hip from -3.0 to -2.9. The R hip, L and R femur all stayed the same, in the -2.3 to -2.4 range. The forearm however, which I’ve never tested before, came in at a whopping -4.8. I don’t have a prior number on that because they never tested it before but I’m assuming that this is a decrease. This scares me because it will potentially get worse the longer I stay on the Tymlos, and even though we’re more concerned about breaking a hip and thigh, I really don’t want to break my forearm either. I spoke with McCormick who said that the forearm bone will not grow back. He said because my numbers are actually pretty good, I could cut my losses, preserve my forearm and switch to Reclast. I’m worried about the Reclast and some of the other meds because of the potential jaw necrosis. They say “don’t get a tooth pulled while you’re on it” but how can you avoid that if it’s needed? Wait a year? And some of the side effects of Reclast sounds horrible. I know that it’s uncommon but what if I’m one of the small percentages? All of the options are frightening honestly and it’s hard to make a decision. My endocrinologist basically disregarded my forearm concern. “Do some wrist exercises and continue on Tymlos”, she said. Sorry about the long-winded message. I don’t hear many people talking about the forearm concern. This seems like a big one to me. Am I missing something? Thank you 🙏🏻

Thank you for your reply. I will do some research.

@kaa1 I hope you can continue on Tymlos and follow up with a bisphosphonate. Or, if your bone density is not where you want it to be, you could ask yoru doctor about Evenity, and then a bisphosphonate.

Many people do fine on Reclast. Again, jaw necrosis is rare (do you have current dental issues of concern?). Many of us get sick with the first one, for a few days, and then things go well. Another option is Fosamax (alendronate).