DEXA scores: mild vs. severe

Posted by prettyflower @prettyflower, Nov 26, 2023

My primary doctor started me on Fosamax when my DEXA showed -2.5 in the spine. After four years the DEXA was -2.7. A specialist then said to move on to Prolia, which I have delayed a bit. Is my DEXA "severe" enough to warrant that jump? What other meds would some of you suggest at this level? I am 59 and have never had a fracture, that I know of. Thank you.

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@ripley

I read about your Prolia experience on another comment page. My DEXA scores have remained consistent since 2017 at -2.4 hip, -2.5 femoral neck and -3.2 lumbar spine. My endo wants me to start Prolia, which I don't want to do. Of course, he minimizes any risk of side effects. I've had no fractures that I know of and am petite at 5'2", 112 lbs. I have my next DEXA in 4 months and am hoping my scores haven't gotten worse. Since 2017, I've been taking New Chapter calcium supplements and collagen powders. I don't do a lot of exercise other than walking.

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i can only say since the prolia shot my life as i knew it ended and i was forced to create a new one. i can't say this will happen t you bit i have researched this to the limit and there were more women who had adverse side effects than not. have mine gone away maybe maybe not because the medication i am taking probably helps but the severe pain i experienced was awful.. i would try another approach and maybe your supplements are helping

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@proliamistake

i can only say since the prolia shot my life as i knew it ended and i was forced to create a new one. i can't say this will happen t you bit i have researched this to the limit and there were more women who had adverse side effects than not. have mine gone away maybe maybe not because the medication i am taking probably helps but the severe pain i experienced was awful.. i would try another approach and maybe your supplements are helping

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Thank you for sharing your experience.

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@proliamistake

i can only say since the prolia shot my life as i knew it ended and i was forced to create a new one. i can't say this will happen t you bit i have researched this to the limit and there were more women who had adverse side effects than not. have mine gone away maybe maybe not because the medication i am taking probably helps but the severe pain i experienced was awful.. i would try another approach and maybe your supplements are helping

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Did the side effects happen after the first injection or after a few years?

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@gently

prettyflower, fosamax was a decent choice at 55. That is when most of us start to lose the most estrogen and consequently the most bone. Even though your dxa shows -2.7, the fosamax probably saved you from greater bone loss.
I don't think of Prolia as a good choice. Partly because of the storied history of the drug, but mainly because it preserves older bone, essentially the same working mechanism as Fosamax, thought with different mechanism of action.
It isn't that -2.7 is severe osteoporosis. But consider that the bone you have is bisphosphonate-bone. Bone that has been preserved with all its little cracks and fissures that the the medication has prevented from self-repair.
You are living in a time when there are amazing drugs available for protection from fracture. And your primary has both made you aware and given you interum protection.
You could get a frax score, have another dexa, double up on your supplements, take alternate supplements, place an estrodial patch, and exercise.
At your level I'd "suggest" Forteo. I'd be happy if an overeager dxa (dxa over estimates bone loss in small bones) placed me in a position where I could get a prescription for this medication. I'd jump sooner than later because those vertebral fractures, unlike any other fracture, never heal into their original position.
Some people never fracture.
My order of choice would be Forteo, Tymlos, Evenity.
best wishes

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I am 78 year old man with a dexa score of -2.7 was -2.4 for 12 years. Hip and back are -2.0 or better. Drs want me to take a once a year 15 minute infusion called reclast because I have bad acid reflux. I am afraid of the side effects. Any advise.

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Gbrodnan 1945,

Yes. One of the bone experts who conducted the clinical trials and had a private practice at Stanford has developed a procedure for delivery that you should print and take to your physician so that he can prescribe the delivery and to the practitioner who will apply the injection.

"As I have substantial experience with bisphosphonates, having led the clinical development of three of them, I recommend the following improvements/modifications to the zoledronic [Reclast} acid label.

First, I always have the infusion nursed dilute the 5mg in 100ml DSW into 500mL of NS, so that the now 600mL infuses over 60 minutes Making the N-BP less concentrated and infusing it more slowly substantially improves renal safety, based on data.
Second, I always in struct the infusion nurses to administer 650mg of acetaminophen at the time of the infusion, and instruct thepatient to take that same dose of acetamino;hen with dinner and at bedtime the day of the infusion, with all three meals and at bedtime the day after the infusion and a final (7th) dose with breakfast the 2nd morning after the infusion This reduces the risk of a symptomatic acute phase reaction (APR) from 22% to < 1%
The 3rd thing I do is to repeat the BTMs (U, NTX, and serum BSAP 4-6 weeks after the infusion of zoledronic acid, to assess the maximal effect (nadir in the rate of bone turnover. This serves as a comparison when I repeat the BTMs 12 months after the infusion. In my extensive 32 years of experience with IV bisphosphonates, the average woman (not taking aromatase inhiitors) will show a weel-controlled rate of bone turnover (much lower than baseline, and not meaningfully higher then 4-6 week psot-infusion), and only needs a 2nd infusion after an average of 24 months. This is similar to the Phase 2 study conducted by Novartis, where the demonstrated in Pm{ treated with 4mg of zoledronic acid that all of them maintained a normal rateof turnover through at least the final visit at 18 months."
These instructions will likely be something your care providers have not heard. It will be a little extra effort to make on your behalf. You'll want to be sure that your prescription provider gets the information to whomever will be giving the IV so they can prepare to have you for the hour instead of the fifteen minutes.
Some individuals report reflux symptoms with the IV bisphosphonates. So take the extra care after eating not to exercise or bend over or lie down or wear constricting belts or pants.
I'm curious about how at 66, 12 years ago you decided to have a dxa.
Some people really do have intensely negative experience following the infusion, lasting for weeks. So don't let any jaded medical provider wave off these precautions as unnecessary.
Best wishes.

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If you click on the 3 dots at the bottom right of this post above, you can bookmark it for future reference.

However, I was not told how to retrieve bookmarked messages.
Found my saved bookmark under the Profile setting.

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@jessicamc

Did the side effects happen after the first injection or after a few years?

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the severe reaction occured after the first shot and within 48 hrs

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@jessicamc

Did the side effects happen after the first injection or after a few years?

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the side effects happened after the first shot but some people have hd several shots before having reactions so there is really no way to know. i just think hat the prolia shot is dangerous and even though people have taken it for awhile with no problems the one that had problems were severe i a so sorry i ever got that shot it changed my life forever are the side effects gone maybe maybe not i probably will never know and no dr will ever say anything

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@gbrodnan1945

I am 78 year old man with a dexa score of -2.7 was -2.4 for 12 years. Hip and back are -2.0 or better. Drs want me to take a once a year 15 minute infusion called reclast because I have bad acid reflux. I am afraid of the side effects. Any advise.

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Medicine is one way to go, but read what Dr. Keith McCormick has to say about diet and your bones. Acid reflex could be your body having a hard time with the calcium your taking.
My scan was -3.1, in the spine and my Dr. wanted me to start meds, I'm a 65 year old woman. I power walk 2-3 miles, three times a week, I started jumping lightly 10 times a day landing on my heals (2x's a day;) started taking zen basil seeds, I eat mostly a veg/vegan diet, I don't smoke and occasionally have a drink. One year after doing the above I had another scan and my number dropped to -2.8, I am going to continue with my bone plan and add a gym membership for lifting weights with a trainer to get started on the right foot. I'm treating my bone density not as a disease, but as a product of getting older and working to slow it down as much as possible.
Before going on meds. read up about the med. your Dr. wants to put you on.

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@gently

Gbrodnan 1945,

Yes. One of the bone experts who conducted the clinical trials and had a private practice at Stanford has developed a procedure for delivery that you should print and take to your physician so that he can prescribe the delivery and to the practitioner who will apply the injection.

"As I have substantial experience with bisphosphonates, having led the clinical development of three of them, I recommend the following improvements/modifications to the zoledronic [Reclast} acid label.

First, I always have the infusion nursed dilute the 5mg in 100ml DSW into 500mL of NS, so that the now 600mL infuses over 60 minutes Making the N-BP less concentrated and infusing it more slowly substantially improves renal safety, based on data.
Second, I always in struct the infusion nurses to administer 650mg of acetaminophen at the time of the infusion, and instruct thepatient to take that same dose of acetamino;hen with dinner and at bedtime the day of the infusion, with all three meals and at bedtime the day after the infusion and a final (7th) dose with breakfast the 2nd morning after the infusion This reduces the risk of a symptomatic acute phase reaction (APR) from 22% to < 1%
The 3rd thing I do is to repeat the BTMs (U, NTX, and serum BSAP 4-6 weeks after the infusion of zoledronic acid, to assess the maximal effect (nadir in the rate of bone turnover. This serves as a comparison when I repeat the BTMs 12 months after the infusion. In my extensive 32 years of experience with IV bisphosphonates, the average woman (not taking aromatase inhiitors) will show a weel-controlled rate of bone turnover (much lower than baseline, and not meaningfully higher then 4-6 week psot-infusion), and only needs a 2nd infusion after an average of 24 months. This is similar to the Phase 2 study conducted by Novartis, where the demonstrated in Pm{ treated with 4mg of zoledronic acid that all of them maintained a normal rateof turnover through at least the final visit at 18 months."
These instructions will likely be something your care providers have not heard. It will be a little extra effort to make on your behalf. You'll want to be sure that your prescription provider gets the information to whomever will be giving the IV so they can prepare to have you for the hour instead of the fifteen minutes.
Some individuals report reflux symptoms with the IV bisphosphonates. So take the extra care after eating not to exercise or bend over or lie down or wear constricting belts or pants.
I'm curious about how at 66, 12 years ago you decided to have a dxa.
Some people really do have intensely negative experience following the infusion, lasting for weeks. So don't let any jaded medical provider wave off these precautions as unnecessary.
Best wishes.

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Interesting information. I have had Reclast infusions with no side effects unless you call a headache one.

Reading your instructions to inform the infusion nurse…I have to say they would either laugh at me or kick me out.

Seriously, I would like to know where you obtained this information and the author. Otherwise, it is useless for me or basically anyone to obtain an infusion with these instructions in hand. Thanks!

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