Treating Osteoporosis: What works for you?

So to repeat: Tymlos and Forteo can be used to heal the atypical fractures caused by anti-resorptives like biphosphonates and Prolia. Their main action is to build new (quality) bone.

Forteo can now be used for more than two years.

@catluvr999 we don't know your spine score. My reports say that the femur neck score is not reliable for measuring changes. A score of -2.8 is not terribly severe as yet and if you don't have fractures, insurance may not cover the bone-growing drugs. Have you checked insurance?

One big problem with osteoporosis treatment is that the bone-growing drugs (Forteo, Tymlos and Evenity) apparently are most effective if you have not taken Prolia or biphosphonates. But doctors use the latter two meds as "front line" and insurance only covers the bone-growing drugs if you have not tolerated the others (and have severe osteoporosis and/or fractures).

With a score of -2.8, if your spinal scores are also in that range, I would consider Keith McCormick's "The Whole Body Approach to Osteoporosis" and maybe Lani Simpson MD's Facebook page. Margaret Martin has great exercises.

You can sort of run out of time with meds. I don't know your age. If, say, you do biphosphonates for 5-10 years then the allowed 2 of Tymlos, and/or 1 of Evenity, then you are left with only Prolia. Apparently people are doing Prolia forever but there are those risks of ONJ and atypical fracture, and other concerns about that drug.

The DEXA scan results are not linear even if you use the same machine. You have to look at the trend. One score will go down, then up, then down, but the overall trend of the report will be clear. Keep a chart over the years.

I have 7 spinal fractures. I could not tolerate Forteo and tried hard to get on it before my fractures. Even saw an immunologist to try to desensitize. I was on cancer meds but my doc did not want to try Reclast because of afib (that concern has been discounted) and he does not use Prolia. I tried to get into the Tymlos patch study. Then I fractured.

I guess my point is, do what you can now but don't wait too long for meds. I wish I had discovered Tymlos. But even that was a problem at first. I could not tolerate a full or even half dose. I ended up in the ER. I quit. Met with a bunch of MD's. Restarted Tymlos at 2 clicks out of 8 and moved up slowly. It's been 10 months now and side effects become minimal if you stick with it. I wish I had known all this before fracturing but I can still stand up straight! But lots of pain and disability.

You can meet with Keith McCormick online. Lani Simpson has workshops on various topics. But if your scores get worse and if your spine is worse than that -2.8, think about meds regardless of side effects!

My plan is to do Tymlos and then Evenity if I still need to grow bone. Then according to doc, hopefully low dose Reclast with a long infusion, careful monitoring, and breaks in meds if safe. My doc has me choose, and you can always make your own choices regardless of what a doc recommends.

Yes. I got both hips and lumbar spine scanned. I have put my scores in my bio, if you want to click my username. This was my 4th scan since 2006. Unfortunately No doctor ever told me we should get our scan done on the same machine each time for an accurate comparison....I found out through my osteoporosis research and came across that. To make the comparison even worse than not being on the same machine, my scans were also on a variety of *brand* machines. Hologic has a different report format than GE does, for example....two of the common brands...the Hologic reports are much clearer to understand., IMHO. If I ever get another scan again I'll be sure to get one on a machine that has a Trabecular Bone Score (TBS) application on it, which I learned about after doing the scan. A TBS score apparently gives additional info about the bones....more about the structure that's not strictly the bone density, if I'm using Sara Meeks' (physical therapist) terminology right. She does seminars and has videos on YouTube, etc., and seems quite renown. Hopefully Echolight or some other non-radiation method will come to San Diego soon....another option instead of dexa. So much to learn.....

@catluv999. Hello and thanks for your inquiry. I think the issue was mostly that my wrist scores were used as a basis for the decision. According to my doctor, wrist scores are not a reliable source for placing someone on medication. I will check and see if I have those scores and get back to you. Let me bookmark this post so I can find it again.

Did you have both hip and spine scores?

Chris

As far as I know, the only thing that the Z-score does is compare one's gm/cm² DEXA result with that for others in the same age group. (Whereas the T-score compares the result with those for women age 30, if I recall the age correctly.) But how would that determine secondary causation?

One of my frustrations with DEXA tests is how little actual valuable data they yield. But I'm unaware of what can be deduced from them with respect to cause and would appreciate hearing more. Unless one has a significantly unusual score (an outlier or zebra in stat terms) that reveals some underlying undiagnosed condition that affects bone density beyond declining estrogen due to age or other estrogen depletion?

Hi Chris @artscaping. Can you relay what t scores you had that mayo clinic said didn't warrant medication at that point....and any other context that you think might be helpful? I try following the threads back to a beginning to see context....the start of people's journeys on this site.... but I fail miserably. I wish a part of everyone's bio gave the start of their journey. I think I'll add mine now in my bio.

I liked into mayo clinic but was told or first visit need to be in person. Was that the car for you? I'm not a traveler but maybe at since point I'll do it.

I think that by "medication that can make your bones healthy" she meant the vitamins she then listed....even though literally that's not what her specific words meant ("there are medications....and that's why you should take vitamins...."). Yep, a useless discussion with a professional. And I always have such hope.🥴

Thanks. There's no shortage of info for sure. I understand that it's not possible to completely boil down a lot of this info into an easily digestible comparison table, but I truly think it's possible to come close. I did it as a technical writer translating complex system relationships into a simplified chronological flow diagram....and if I can do it, anyone can.....well, almost anyone.😆

Thanks. Yes I have a primary doctor....and will finally get an Endocrinologist appt...Dr Gina Woods.... in October, who I'm hopeful won't jump to a fosamax/Alendronate recommendation like my doctor did. I only got in about 10 of my 20+ questions w my doctor during our virtual appt....during which I pressed for investigating possible secondary causes of my -2.8 hip t score, which she obliged in spite of saying my Z scores would be what indicates a possible secondary cause to blame and they don't.

The other article is more thorough. Mayo Clinic has articles as well. There's no shortage of info, but there is, in my mind, a shortage of drugs that can do what we need most....help keep healthy, renewing, resilient bones...with no downside risk. The science isn't quite there yet.

Thanks. Their table at the bottom of the article got me excited until I saw the super poorly done Dosing column that gives a mixed bag of mechanism of action/purpose and delivery system. Sheesh!