Is a dexa every 2 years enough?

Posted by hopefulheart @hopefulheart, May 21, 2024

My doctor suggested that a Dexa scan every 2 years is what he uses to monitor Evinity then followed by reclast
I asked about blood turnover markers to see if meds are working along the way
He said he doesn’t use those
Time for a new doctor????

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

If you are immunocompromised, you may want to think twice before taking prolia.

"Does Prolia weaken your immune system?
Medically reviewed by Carmen Pope, BPharm. Last updated on Feb 9, 2024.

Official answer
by Drugs.com
Yes, Prolia (denosumab) does appear to weaken your immune system. Research has shown people who take Prolia are at an increased risk of serious infections leading to hospitalizations, including serious infections of the skin, abdominal, urinary tract, and ear. There is also a higher chance of developing endocarditis (an infection of the heart’s inner lining, usually involving the heart valves) in those who take Prolia, and those with advanced kidney disease have an increased risk of severe, life-threatening, low calcium levels (hypocalcemia) developing, particularly if they have a metabolic condition called chronic kidney disease-mineral bone disorder (CKD-MBD). For some side effects, people administered concomitant immunosuppressant agents (such as prednisone or cyclosporine) or with impaired immune systems may be at an even higher risk."

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Profile picture for awfultruth @awfultruth

@susanjane77 Hi. Before commenting on Prolia I want to say that generally you don't want to be on Reclast 6 years consecutively. That's too long to have heavy duty bone suppression. I don't know your details and all your DXA scores and how that's trending and so on but I personally would be thinking of taking an anabolic (bone building) med after all those years of bone suppression. My idea and hope is that a bone builder following a bone suppressive med may at least somewhat restore the architecture and bone quality that will have declined with long term bone suppressive meds.

On Prolia, lots of people have good results and few or no side effects with Prolia. The biggest problem comes with how to stop Prolia if you need to stop taking it. The longer you take it the greater the danger stopping it. When you stop you lose all the bone you gained while taking it and the loss occurs rapidly. That will happen to everyone unless they take some other med to stop that loss and even a follow up drug may not stop that loss.

But worse than that is that some people get multiple fractures on stopping. So they don't just lose the bone they gained, they start fracturing and may fracture many times. I don't know what percentage of people this happens to, I wish I did. I've seen on these groups people saying they got 2-10 fractures within a year or two of stopping Prolia. This happens most often when doctors are or were unaware of this problem.
So Prolia works great for many people but some of us think this is a drug that is a reasonable choice only quite late in life. When you don't expect to live more that 6-10 years say.
That's a very quick run down of the worst issues. Others will have different opinions to consider.
I have no medical training - I'm just a guy trying to turn my own bone loss around.

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Thank you for your thoughtful note. Just met with my endo today and we have decided to start me on Prolia after being on Reclast for several years. I was informed that i will be on Prolia for the rest of my life. So be it. Lets just hope it starts to build stronger bones.

Good luck turning your bone loss into building strongers bones and no fractures! I have been fortunate having no fractures and hope to keep it that way.

Thanks again for your thoughts. Appreciate it!

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Profile picture for babs10 @babs10

@mlwh, never heard of it and, of course, none in Denver, but here is a link to locations:
https://www.dexafit.com/dexafit-store-mapper

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Wrong thread, but I can't delete. Disregard.

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Profile picture for babs10 @babs10

@mlwh, never heard of it and, of course, none in Denver, but here is a link to locations:
https://www.dexafit.com/dexafit-store-mapper

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Update - there is now a dexafit in Denver. Now I'll investigate.

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Profile picture for babs10 @babs10

Update - there is now a dexafit in Denver. Now I'll investigate.

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What is Dexafit??

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My doctor actually laughed when I requested a ctx and p1np.
I insisted. I told him he didn't have to read it. I just wanted the results so this group and Dr McCormick could help me with my numbers. I definitely would fight for it these medicines are strong and you want to make sure they're working before 2 years down the road you find out you're sick and they don't. Plus you can get aDexa scan yourself. Just get the referral. Tell them you will be a Cash pay. Again insist it. They're only $85-100
Best Regards

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Profile picture for babs10 @babs10

@elisabeth007, others will chime in, I'm sure, but for me, these bone marker tests are not more valid than DXA scores - that is comparing apples and oranges.

If you get the baseline blood tests before you start meds, you can retest in 3-4 months (and beyond) and the results of those blood tests will inform you as to whether or not the medication is actually doing what it's supposed to be doing. I'd hate to spend 2 years on Forteo or Evenity etc. to find out at the end that they didn't work. If they aren't working, there is an opportunity to change the treatment plan.

My first MD would not order them because he said the results would not change his plan and that made zero sense to me.

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@babs10 I am late to the party here but I had to request a CTX from my doc after about 1 year of Fosamax and before I did reclast. He somewhat reluctantly (maybe I read him wrong) did. Very low CTX (about 58). Had my 2nd once a year DEXA before Reclast; some improvement in T scores but not enough, thus Reclast. One year after Reclast at CTX 78; he was very happy with that. I was shocked when he said no DEXA for another year, and I am due for a second Reclast infusion in July, apparently without knowing via DEXA if the drug has worked at all, a little, or a lot. Treatment wouldn't change regardless I was told. Beyond zero sense.

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Profile picture for jozer @jozer

@babs10 I am late to the party here but I had to request a CTX from my doc after about 1 year of Fosamax and before I did reclast. He somewhat reluctantly (maybe I read him wrong) did. Very low CTX (about 58). Had my 2nd once a year DEXA before Reclast; some improvement in T scores but not enough, thus Reclast. One year after Reclast at CTX 78; he was very happy with that. I was shocked when he said no DEXA for another year, and I am due for a second Reclast infusion in July, apparently without knowing via DEXA if the drug has worked at all, a little, or a lot. Treatment wouldn't change regardless I was told. Beyond zero sense.

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Thanks

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Profile picture for jozer @jozer

@babs10 I am late to the party here but I had to request a CTX from my doc after about 1 year of Fosamax and before I did reclast. He somewhat reluctantly (maybe I read him wrong) did. Very low CTX (about 58). Had my 2nd once a year DEXA before Reclast; some improvement in T scores but not enough, thus Reclast. One year after Reclast at CTX 78; he was very happy with that. I was shocked when he said no DEXA for another year, and I am due for a second Reclast infusion in July, apparently without knowing via DEXA if the drug has worked at all, a little, or a lot. Treatment wouldn't change regardless I was told. Beyond zero sense.

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@jozer the DEXA doesn’t really impact the bone medicine protocol. The same with the CTX/P1NP. I like them because I like to look at my test scores and see if there are trends. But I also understand that the DEXA is vague in general and they didn’t tell me my bones were gonna fall apart in cervical spine surgery! Make sure the DEXA test that you get has the TBS analysis with it and keep taking those bone meds!

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