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Have you done osteoporosis testing?
Today, on New Medical Anxieties For Sherry: Osteoporosis! All thanks to a study that says nonambulatory SMA children have weaker upper leg bones and my use of anti-inflammatories for chronic pain. Yay! 😅
This is the part where I ask if anyone here has gone through bone density testing and what it was like for you.
How did it come up with your healthcare provider? Were you prescribed any treatments? How are you faring now?
Now, if you’ll excuse me, I’m going to go try to stop freaking out…
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9 Replies
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This reminds me… I was supposed to do a bone density test over the summer, and I forgot. 😑 Try not to dwell upon it too much. I know the scan is super easy to do, so maybe you could talk to your doctor about getting one prescribed for some peace of mind. I will say, in the past couple of years, I have had more trouble with my knees and ankles, so I wouldn’t be surprised if I have this. Aging, man. Can’t stop it from coming!
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I’ve had several DEXA scans. Maybe 6 or 7 years ago, my neuro referred me to an endocrinologist to assess bone density. The initial DEXA scan showed concerns with my T scores in the hip areas. I was prescribed Fosamax and took that for a few years, with annual DEXA scans. After 3 or 4 years, that seemed to stabilize and in 2024, I switched from Fosamax to an annual infusion called Reclast. My T scores in early 2025 DEXA scan improved and am now on treatment holiday and will have another DEXA in early 2027. Seriously, not a big deal but certainly something to stay on top of and be aware of.
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Breathe. Inhale, exhale.
Rinse, repeat.
I understand the inclination to freak out over the newest health complication but the question for me has become: can I do it anything about it? Are there any reasonable strategies to alleviate this issue or not?
Like everything else with SMA, it depends entirely on your baseline health. That said, It’s a really difficult for me to lie down on a table, even if it’s padded.
I am a short, Hispanic, 56-year-old woman which automatically means osteoporosis as we get older.
My doctor broached the subject about bone density and we had a very frank conversation about it. Here’s my take. Let’s say I go through the trouble and I get the scan, most likely results will say that I have some level of osteoporosis. With my health being what it is, I asked my doctor if she would actually prescribe that medication for me. She stopped, thought about it, and said no, she would not.
End of story.
But since you’re asking this, I may check in with my SMA doctor and see what he thinks.
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I stand corrected! (so to speak)
Reached out to my doctor and he said there is value in getting a DEXA scan. There are some medications that need serious consideration but there are other options available.
Lesson here is ask every question. More information is better than less.
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Interesting! I really need to schedule my scan. I’m in between hospitals right now, so it’s just a waiting game.
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Kind of a follow-up as well from my response a month ago. This was never an issue for me until I became non-ambulatory in 2015. In my annual MDA clinic check up, my neuro suggested an evaluation of this very thing and referred me to an endocrinologist. The endo is the doctor who prescribed the DEXA/bone density scan. They focused on the upper thigh and hip area, as well as my left forearm. I didn’t ask but assume these are typical at-risk areas.
The prescription for Fosamax was a pill taken weekly. I’m not sure how that would work with those using a feeding tube, IOW, can it be dissolved, etc. The Reclast is an infusion, done once a year, and takes about an hour. Either one works in adding bone density, and apparently for me, was effective in achieving that, thus my current prescription holiday.
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Really glad to hear that the pill has helped you. How come you’re not taking it anymore? Are you only supposed to take it for a certain amount of time? Sorry if these are silly questions.
Getting a bone density scan was never at the top of my long list of things to do and manage with SMA. But now that I’m getting older and having more aches and pains, I’m thinking it’s something I should really get done soon, just to stay on top of it.
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Not silly questions at all. So, I was ambulatory until I was 52. Between no longer load bearing in my legs and hips in combination with my age, my neuro thought it was a good idea to have this done. After taking the Fosamax pills for 3 years or so and then transitioning to the Reclast infusion, my DEXA scan showed an increase in my T scores, satisfying my endocrinologist to the point of recommending a “treatment holiday”. We will do another DEXA scan in a few months (we completely skipped in 2025) and will proceed based on those results. I’ll try to remember to come back here after my next scan and appointment with the endocrinologist for follow-up details/results.
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Learned something new! Thank you for sharing your experience. This is new territory for me, and it is something that I will experience for the first time myself soon. It’s nice to hear from others.
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