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Treating Osteoporosis: What works for you?
Osteoporosis & Bone Health | Last Active: Sep 2 10:11am | Replies (1085)Comment receiving replies
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.
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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.
Dexa Scan Results Summary_Copy (Dexa-Scan-Results-Summary_Copy.pdf)