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To medicate or not to medicate
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An_254785 posted:
I've been on various medicines (Actonel weekly, Reclast) since 2003. Last year (end 2012) my doctor said I should have the Reclast and next year we'd consider a drug holiday. He didn't want to jeopardize the small increases in density by stopping the meds. I've moved and I went to a new doctor who said not to take the meds and not to have a bone density scan. My primary ordered the scan. When it came back she told me to start Fosamax which makes no sense to me at all. I asked for a copy of the scan and I am now waiting for it. I don't know what to think. If I go off the meds, I lose bone and if I take the meds, I could break a femur. I just don't know what to do. It is hard to talk to my former doctor. Who do I listen to?
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bonebabe responded:
First off, don't worry about the femur break. Those are soooo rare and occur evenly among people on osteo meds and and those not on meds. No direct link has been made between them and bisphosphonates.


As for your continuing meds...I need to clear up some thinking for you. When patients take the meds, gains are good, of course, but no change is considered stable. That means the medications are working. "Small gains" is a red flag to me. There can be legit small gains IF the place where you have your test has done a precision study on its machine and can tell you what the lowest significant change is based on the results of that study. In other words, what is the smallest gain (or loss) that indicates true change. In our osteoporosis center, it is 2.98 for the spine and 2.97 for the total hip. That means that any increase or decrease that is greater than these numbers is a true change. If it's less than these numbers, that's no change. Very few places (especially doctors' offices) conduct these precision studies.


Next - I was a little confused about the timing of your scans. You said you had one in 2012 and would likely take a drug holiday next year. Are you getting another DXA in 2014 or are you just not getting another injection? You want to have DXA's every two years if you're on medication. That's the only way you can tell if your medication is working. Don't have one at one year unless you're on prednisone because bone is too slow to respond to change and one year won't give you enough time to measure any improvement.


Now for your new doctor. If she's comparing your new scan to your previous ones, it can't be done. You would need to consider the one your new doctor ordered to be done as new. You can't compare DXA's accurately from one site to another. Some will say you can, but you can't get a reliable interpretation. If you're told you can, ask if the testing center is ISCD accredited. If they're not, look for one that is. You can find one by going to the ISCD site (www.iscd.org ) and click on the links to find one near you. ISCD is the regulating agency, if you will, for all things osteoporosis. I work in an accredited osteoporosis center.


Our medical director (who is on the ISCD board) maintains that if you've been on medication for a number of years and your bone density is showing as Stable in accordance with an accurate interpretation from a place that's done a precision study, and you haven't had a fracture, you can go off the meds. Be sure to have a DXA every two years and if you start to show a loss...go back on the meds.


I hope this information helps you. I get a little carried away on this topic because so many people think bone density testing is as easily interpreted as labs and that anybody can do it. It's a whole lot more than a T-score.


You can also go to the National Osteoporosis Foundation website (www.nof.org ) for a lot of information on this subject.
 
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nodeerhere replied to bonebabe's response:
Thank you so much for this information. To answer:

I had a scan in 10/2012. I moved. So the scan done in 12/2013 is on a new machine. That said, I realize it can't be compared to the previous scan. I live in FL, and this state is not on the iscd.org site. I've been getting scans yearly. My doctor suggested maybe taking a drug holiday - not getting the injection in 2013. I went to a new doctor who suggested I not have the meds since I've been on them too long. She didn't order the new scan. The primary ordered the scan and when she saw the results she suggested I take Fosamax, which if she had read my history, she should not have suggested.

I appreciate hearing what your director maintains. I think my density has been somewhat stable since changes have been minimal. So far I have not gotten a copy from the office and I will have to keep after them.

What worries me is that I don't want to lose more density. If been worrying about the femur since an acquaintance had this break and is now having trouble with the rod that was implanted.

I will look at nof.org. Thank you for this information. I just don't feel like I am getting good coordinated care in my new area.
 
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bonebabe replied to nodeerhere's response:
Don't get a scan every year. There's no reason to, as I said, unless you're on prednisone.


Now some questions so that we can get a better idea of your needs.


What are your T-scores? How old are you? Have you had a nonviolent fracture (one from a standing position) since the age of 40? Did your mother or father break a hip? If your numbers are in the osteopenic range, what was your FRAX score?


I do see that there are no accredited facilities in FL, however, there are a number of certified physicians there who can accurately interpret results. There are also ISCD certified technicians to perform the tests. Go back to the site and click on "Certification," then look at CCD (doctors) and CBDT (densitometrists). Move the cursor to the right to where it says "Registry" and put in your state. You'll see a whole list of certified people who may be near you. At least with them, you'll know that they know what they're doing.
 
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nodeerhere replied to bonebabe's response:
Scan was done 10/2012. I was 62. I am now 63.

Neck Left -2.4
Neck Right -2.4
Total Right -2.4
Total Left -2.2

Spine
L1 -1.7
L2 - -1.2
L3 - -1.6
L4 - -0.7
L1-L4 -1.2

Never had a fracture of any kind. Neither parent broke a hip.

Not sure which is the FRAX score. Major osteoporitic fracture 10%. Hip Fracture 2.0%.
 
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bonebabe replied to nodeerhere's response:
Your info puts you in a gray area that's really subjective. According to the numbers, you are not osteoporotic and your FRAX scores are not in the range to indicate RX therapy. However, you are right on the border of falling in the RX range. That said, it's like saying 200 lbs is obese and you're 199. You're still overweight, but just don't fall within the measuring parameters.

Are you on estrogen?

If your BMD, not T-score, has not decreased significantly (and you can't determine this by looking at your scans - there's a formula to determine it that the tech uses) then I'd say stay off the meds and have another scan in Oct 2014. If those numbers do not show a significant decrease (calculated according to the machine's precision study) I'd reassess every two years. But....if you have a fracture or your T-score at any site slips to Osteoporosis (-2.5 or lower) I'd go back on the meds.

Make sure you consume 1200 mg of calcium and 1000 IU of Vit D each day. Remember the body can only absorb 500 - 600 mg of calcium at a time, so spread it out during the day.
 
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nodeerhere replied to bonebabe's response:
My former doctor did say I was borderline. So why did the new doc suggest my spine was osteoporosis and then my primary said I have osteoporosis in my left hip. The primary was looking at the new scan which I don't have a copy of. What do i do about the fact that this new scan is on a new machine?

No, I am not on estrogen.

I take 1600 mg of calcium (multi and calcium in the am and another calcium at dinner). I take 2000 units of vit D as per my gyn who spoke of a study that found people who took this amount had less hip fractures. I have 400 plus multi with 400 in the am, 400 in the calcium tablet. Then 400 plus another 400 in the calcium tablet at dinner.
 
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bonebabe replied to nodeerhere's response:
OK, what you do since you had scans in two different locations, is look at the most current one. Pretend it's the first one you've ever had. Go with the 2013 numbers. If your doctor(s) say you have osteoporosis, continue with an osteo med.


Have another scan in 2015 at the same location as the 2013 one. If you are stable (no significant decrease) and have had no fractures or have not started any high risk medication, you could try going off the medication until your next scan in 2017. At that time, if your numbers are worse, go back on the med. If they're still stable, continue the "holiday" until or if they worsen.
 
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nodeerhere replied to bonebabe's response:
I spoke to my former doctor. He says I've been fairly stable. The scan indicates osteoporosis. He was willing to write me a script for Reclast. But he said generally if someone is on the med for 5-7 years and is stable, they can take a drug holiday. I started meds in 2003. Started Reclast in '08. That adds up to 5 years on Reclast. I guess it's time for a holiday. I guess there's no way to really be sure either way what to do.


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