Forteo vs. Tymlos: Which did you choose?

@windyshores I will indeed catch up on the videos you cited as well. I definitely want to know what my rheumatologist’s track record is with this plan. Fairly overwhelmed with all of this but know that it’s ultimately up to me what I am willing to do. Thank you for all of your suggestions and support!

It's unfortunate that we need forums like this one to get useful information, since it's hit-or-miss whether your doctor actually knows what he/she is talking about when it comes to osteoporosis treatment. That's why your approach is good: get educated, and then interrogate your doctor! 🙂

It is a shame, but thank goodness we have each other. I was always very compliant when it came to doctors for decades. I feel like I am finally figuring out how to navigate information better and not just ‘go with the program’. I think medicine is ever changing and new approaches to all sorts of maladies are sprouting up. I guess the hope is that your physician is engaged in the evolution of treatment and doesn’t just do the ‘one size fits all’ method.

I used Forteo for two years after experiencing 13 compression fractures in my spine. I feel it literally saved my life. It took about 3 months before I felt positive healing. After Forteo I did one shot of Prolia, but had bladder and jaw problems with that, so did not repeat it and went on Raloxafine instead. Now I am on 6 more months of Forteo and then will do a year of Evenity. Have yet to determine follow up from that. My last bone density from my hip (as they no longer can take readings from my spine due to all the fractures) was -3.5. I am very active, walk everyday and eat healthy. I am 66 years old.

@lhankins Ben Leder MD has a new video on YouTube, 6 months old, and it is quite good. I watched it last night.

@broken13 as I may have told you I have 7 spinal fractures and can commiserate. I like your protocol. You must have a good doctor.

I am going to be asking mine for some more, er, creative approaches, diplomatically of course. When I did that before he answered "Thank you for your persistence" which I thought was quite funny.

It is such a challenge to find what will work for your own situation and body. I have had to do a lot of my own research and asking questions. Forteo was fairly new when I went on it, so I had excellent support from them. Its been a frustrating journey as most Endocrinolgists don't like to be questioned, but what has helped me, is keeping my own file of medical documentation along the way, and consultation with a hematologist as I also have neutropenia. I have not had further fractures since the two years of Forteo in 2016. This site has been very helpful in letting me feel more comfortable with Evenity as next step. Thank you for sharing your journey. It really helps others : )

Hi @broken13 thanks for the info. Can I ask why you can’t get an updated dexa reading in your spine “because of” having the 13 fractures? Is dexa not able to read bc so much damage? I had 9 fractures (so not fun; I feel for you with 13!) and wanted to get another dexa - been about a year and a half, just on alendronate/fosamax and eating more calcium, and the long healing of the spine seems to have finished so I’m not in such pain but am curved over in spine. Permanently evidently. Not a good spine for walking or standing.

@kristinebelz I have fractures at L1, L2 and L5 (as well as some thoracic ones). AS you know these fractures don't really "heal" but stabilize. I mean the structure of our spine changes permanently. Apparently compression fractures look denser than healthy vertebrae and make the DEXA look better.

My last DEXA, even though I told them which ones to exclude, they included L2 so I did some math to try to get a more accurate idea of progress!

The thing is, normally L1 through L5 will each be different and the overall score is a composite. I am not sure if DEXA's comparing only L3 and L4 (in my case) has validity but I'll take the 20% gain on Tymlos regardless!

They tried, and tell me it won't take a proper reading because of the fracture healing. Have you had a blood test to be sure you need calcium? My calcium levels are fine, so obviously not the cause of my osteoporosis . So sorry about your difficulty with mobility. I also have a curve now and lost 4 inches in height, but use a treadmill and cushioned shoes while doing so. Its so important to keep the body moving. I started in the pool after my breaks, and just walked back and forth until I built strength.