People are being medicated prematurely, and as I wrote before, the meds used initially may interfere with the bone growing meds used later. Ugh.
I recommend Keith McCormick’s book the Whole Body Approach to Osteoporosis. I have met with him (he is a chiropractor who specializes in osteoporosis). One thing I like about his was that he did use meds when needed- but didn’t do them for the rest of his life as we often hear will be necessary,
I was doing sword tai chi and walking 6 miles before I made one stupid movement. MY DEXA scores supported the idea that my bones were fragile. I regret not doing Tymlos earliler but then again, I would not be motivated to suffer these side effects. Pain is a great motivator.
I can get a DEXA in a year due to my situation, but you are right, you probably cannot. I would be interested in the bone quality test - glad you mentioned it here for everyone.
ps my chart of DEXA now has 11 columns! That’s a lot of scans. Like any chart, you can kind of draw a line through it to get an average rate of decline.
So many variable and complications. I am starting to regret the fact that with my family history I don’t have an earlier baseline…. my first bone scan will be next month at age 59. I was just very busy before retirement, when I was also still watching over my mother. Lots more time now to focus on my health. So today I agreed to a consult with a glaucoma specialist (family history there too; been on eye drops a few years)…. I may need to search for a thread on that too.
I started dexascans about age 50 or so because I’ve been taking daily inhaled steroids since age 42, plus some courses of oral steroids thrown in for good measure. My scans have been good but I’m due for another “soon,” as a post menopausal woman who is small to medium frame and an older sister with osteoporosis.
So far, the place that did my most recent scan doesn’t do the other measures. The only md certified in our state died. The other place where I had my dexascans hasn’t returned my call.
Rats! None of the 3 major health centers offer TBS, which sounds like it would be a good thing to know. One of the centers said to try calling back in late January, as they may be updating their software. That center does offer VFA.
None of the centers are certified and I’m pretty sure none of the techs either. Oh well, I’m in no rush for me next dexascan.
So I think that it will become more common going forward. The problem is that in the past, patients generally had to pay on their own for the TBS – and the software to calculate the TBS is pricey. But once the software is installed, it doesn’t cost the facility any more to run the TBS – it’s generating a report from the same scan as the basic DEXA scan, just evaluating the data in a different way. So the Medicare approval of a specific reimbursement tips the scales – now it makes economic sense for centers to install and promote use of the software, so they can add on to their charge to Medicare. (DEXA is weird – my Medicare claims record shows my facility billed $737 and Medicare “allowed” $737 – but Medicare only paid the facility $163 – same deal 2 years ago. This is the total amount – no copay or deductible for me)
Sounds like it may work for the medical centers to consider adding that software if it will mean more reimbursement and give everyone more and better data. I can call all the centers again in February to see if they’ve decided to add it.
I have my DEXA scan at 9am on Thursday so came back to review tips here. The clinic did not mention anything about the calcium scan, but I’ll skip it on Tues/Wed evening.
Should I skip morning multivitamins too? Does it matter if I eat breakfast or not?
Thanks for the quick info! Yes, I plan to skip my calcium (which I tak in evening) a few days. And for sure will multivitamin that morning…. maybe will skip it Wed too (already took it today).
I would think the multi’s are fine but to be safe I would skip. Noone told me anything about this before my scans!
BTW for anyone dealing with more severe osteoporosis/fractures, starting Tymlos at 2 out of 8 clicks and moving up has worked for me, and I have been on for 3 months. Feeling safer every day!
Oh gosh, I’ll update here. Finishing 18+ months of Tymlos with unbelievable gains of 20% in spine and 9% in hip. I made sure scores were adjusted for fractures. That means going from -3.7 to -2.6 in spine and -3.3 to -2.9 in hip.
Keith McCormick has a new book out: “Great Bones.” It is almost 700 pages!
Also I never did tolerate a full dose of 8 clicks of the pen. I started with 2 and ramped up to 6-7 clicks for most of my time on Tymlos. In other words, a partial dose still was remarkably beneficial. I have had fatigue and some occasional dizziness but worth it.
I have a bone scan on Friday. My last bone scan 2 years ago said osteopenia. I’ve been taking calcium supplements and weight bearing exercises but I’d like to be prepared.
What is the cost for these new medications for osteoporosis? I had a friend say that she discontinued taking them because the cost was prohibitive.
At what point should I start seeing an endocrinologist? From what I’m hearing from my neighbors, the PCP is prescribing these medications in my area. I’m not sure how comfortable I feel with that.
The drug that you typically begin with, generic Fosamax, is very inexpensive (less than my generic thyroid meds). You can probably get an idea of cost for other drugs from GoodRx.
I never took the Fosamax. I filled my initial prescription, but I put off taking it. After a lot of research & soul searching, I chose not to take meds. My mom’s experience with osteoporosis drugs, my own reactions to meds, and a conversation with my dentist solidified my choice. I am not against the meds, but I don’t take them (and I do have some osteoporosis ).
A friend takes an osteoporosis drug called Raloxifene. She likes it, but she probably wouldn’t have known about it if she hadn’t gone to an endocrinologist who specializes in osteoporosis. If I ever decide to take meds for it, I will go to her doctor.
My PCP sent me to a endocrinologist even when I was borderline. Saw her after two bone scans (about 2 years apart). Hated her, she said I was “rejecting treatment” because I wouldn’t go on any medication. My PCP was so much better, she was like let’s add calcium this time (and Vitamin D the previous time).
I know I will most likely end up on medication at some point, my mother had osteoporosis and my bone scans are already in that range. But at my age (62 now and maybe 58 when I was first diagnosed) and in excellent health otherwise (with no history of fractures), I am trying natural solutions first. I walk a ton more now (switching from the non weight bearing stationary bike I used to do), do yoga regularly, and take calcium and vitamin D supplements.
That’s my plan at this point, although I don’t do calcium supplements due to kidney stone issues; I work hard to get as much calcium as possible through foods, though. My PCP is very understanding of my choice, although I think she wishes I would try Fosamax - but she doesn’t push me. Every medication choice we have to make comes with side effects, and we have to do what we feel is best for ourselves.
My situation mirrors @kelsmom. Have been referred for meds (I think Fosamax) filled the prescription, eventually threw it away after taking 0 pills - just was not comfortable popping it in my mouth after reading and hearing so many issues. My dentist also wasn’t too favorable on the drugs - but he did honestly look at me and say “but broken bones are not cool either” - so he understood that people decide to take them.
My primary care made a referral to me to see an endo doc in December. Thanks to you @deb922 for bringing this up again (and putting it before my face!) I just made my appt. - I’ll be curious what that July appt brings. I take calcium and D and nothing else. When I did get the Fosamax filled I don’t remember it being any more than a few dollars at the most (after my prescription insurance). The “fancier” drugs and treatments are not usually prescribed first I’ve been told - insurance doesn’t always cover injections or the other more up to date treatments off the bat.
My PCP just told me she doesn’t proscribe osteoporosis drugs anymore. Believes they do more harm than good. She and I share a healthy skepticism and deep dive research.
Interestingly, she’s more positive about the new weight loss drugs from much reading and seeing the difference they have made for patients.
Meanwhile, I’m doing weightbearing exercise, and basically, because of my weight, I am myself a weightbearing exercise. Sigh.
There is a lot of research on the calcium but I only found this on multivitamins: