Treating Osteoporosis: What works for you?

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.

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?

@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

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.....

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.

Hi, @windyshores. Thanks for your reply, which I think is a reply to my post starting "Yes, I got both hips and lumbar spine scanned." It's hard for me to follow these threads.

To answer my age: I'm 66. I'm on Medicare. When I check http://www.caremark.com to see my drug coverage with my SilverScript Choice Medicare Rx plan, I see the following (NOTE: Other formats of the alendronate varied in terms of coverage; my primary had suggested the 70mg weekly tab):

- Alendronate Sodium 70mg tablet: $0.00 for 84 days (mail order)
- Tymlos Miscellaneous Inj: NOT COVERED. See your doctor for alternatives.
- Forteo 600/2.4 Inj: My cost: $1,431.08 for 28-day supply.
- Prolia 60mg/ml Solution: $870.50 for 30 days (29.02 per day).

I can see why people just go with the bisphosphonates! Even if my recent toe "dislocation of interphalangeal joint of lesser toe of right foot" mere weeks after my osteo diagnosis counts as a break, and I don't know if it does, possibly (though unlikely anyway per your stated criteria) enabling me to qualify insurance-wise for an injectable (or patch if a third-party manages to get involved in Tymlos's discontinued patch trial), I don't think I'd go with injections at this cost. I'll start looking at what other Medicare Rx plans would cover.

What Rx plan do you have that covers Tymlos injection?

Attached is my chart I made last month of my 4 Dexa scan results, dating back to 2006. Hopefully I transcribed the numbers right; I worked hard with a Dexa-with-TBS facility rep to get the Hologic-vs-GE terminology right. I message'd the chart to my primary in June, and she wasn't all that interested. Her reply: "Your chart is a great summary and recommend you review in detail at your osteoporosis appointment. My understanding is you cannot compare different machines so that may be part of the variance between the Scripps and UCSD reports." My "osteoporosis appointment" (endocronologist) is in October.

Thanks for your suggestions about Keith McCormick and Lani Simpson. I like them both; I even had an email exchange with Keith McCormick -- to help clear up a TBS-related question I had (I haven't had a TBS score yet; I unfortunately became aware of TBS after my May scan). And I've been reading Lani Simpson's No-Nonsense Bone Health Guide book on my Nook.

I don't see any comment in my May report that says that either of my femur neck results should not be considered reliable. The comment for the left femur, for example, the problematic one (-2.8) only says "The left femur total demonstrates an interval change of -10.1% from the most recent previous/baseline study of 1/4/2016, which is a statistically significant change.

I noticed that my 2016 Dexa scan that this recent alarm is based on has some really good numbers and might be an outlier. I'm hopeful that the endocrinologist's review in October might reinforce that. In 2015-2016 I was doing a *lot* of physical therapy for my lumbar spine vertebrae instability, so I wonder if the great scores were in part because of those months of weights and pullies.

Your cancer and fracture saga is quite the ordeal and I can see how it would inform your concern my bone situation, and I super appreciate it.

Thanks again.

So your femur neck is an outlier. Is it possible you have osteoarthritis there? Is there some other reason for those scores? It's strange and puzzling that most of your scores are so good and then those two osteopenic and osteoporotic respectively.

Honestly except for that one score, you are in pretty good shape. The "significant" change in the femur neck was over 6 years and most of us lose bone density after menopause, to some extent. But again, is there something else going on?

Fyi Tymlos has an assistance program. I get mine for free for 18 months. When the time comes for you, you just contact Tymlos Together. The application is on the Radius site but Tymlos Together gives you a rep who handles it.

It seems you have a mystery to solve and I hope you have good docs who pay attention.

I'm with you on being cautious about the anti-resorptives. Though they might have to be the drug of choice in some cases as the other options aren't good or not tolerated which is why I see all of them as a kind of Hobson's Choices.

"Injectable" only refers to the delivery mode, not to any particular class of drugs for osteoporosis. There are both bisphosphonate and non-bisphisohonate injectable.

Here's another of my personal caveats. I don't want 6-monthsworth of anything injected into my body if avoidable. No matter how convenient. To me, that's a heavy load of something unfamiliar to my poor little body :-(.

I think it was Chris' post that mentioned how much better she fared when her doctor reduced the dose-load of an injected anti-osteporosis drug and had it administered more frequently. And her side effects decreased considerably. To my mind, that's good medicine and a good approach.

If I ever take an injectable, I'd start small to see how I tolerated it. And then, if all goes well, decrease the frequency of injections/infusions with commensurate increase in per/dose session. But that's just my opinion.

Thanks. I didn't realize till today when I went onto a drug pricing site that there are Bisphosphonates injectables. I failed to revisit my wording/thinking after making that discovery. I knew injectabled as a delivery method category but until then the term was also handy as a synonym for non-Bisphosphonates. I should have just used the terms Bisphosphonates and non-Bisphosphonates....though likely that's not all-inclusive. My brain hurts.

Good point about 6 months convenience vs its associated high dose and potential reactions.

What are doctors generally basing their diagnoses on if that's not too broad a question. My last three DEXAs only measured L1-L4 lumbar and various femur points. I've never had wrist or other bones DEXAd. But if in fact the femur results are not considered a gold standard, doesn't that generally leave lower lumbar? (I ask because my lower lumbar numbers seems to be consistent over the past decade. I have four herniated lower lumbar disc's so I ponder if they've triggered bony scar tissue that might give a higher density number though. Mentioned it doctor who thought not though.)

Looking back on it, I think that years of sailing the Gulf Stream might have helped me. For one thing, all the reflected sunlight probably satisfied vitamin D requirement. And nothing helps me develop balance and stability better than sailing and trying to remain upright on a heeling boat. I always returned from a few days of sailing with a stronger back and greater flexibility. And stronger limbs and grip...