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First Do No Harm

Charlotte1215
0 Recommendations

I received a WebMD newsletter yesterday quoting an Australian researcher who is recommending that women who are started on osteo meds not be given another DEXA scan for 3-4 years. Thankfully the executive director of NOF disagreed.

How bad can it get when someone recommends that we take some medication and not even be tested for its results, especially when the efficacy of that medication hasn't really been established? That absolutely goes against all the rules of scientific research, and, in my opinion, common sense.

Is the medical establishment do deeply ensconced in the pockets of big phama thay they will buy into this? Here in the USA, I fear that the answer may be "yes."

What has happened to "first do no harm"?

Charlotte

Explore topics in this discussion:

Menopause Osteoporosis Fosamax

10 replies

huessysignoret

Charlotte -- I recently changed primary physicians, who told me that once a DEXA test showed osteoporosis (mine does) there was no point in EVER having another DEXA scan, as the condition would never improve. Has anyone else ever been told such a thing by an M.D.?

Charlotte1215

Dear huessysignoret

"Has anyone else ever been told such a thing by an M.D.?"

Unfortunately, I'm sure they have. The more I read about the experiences of people on this discussion board, the more amazed I become at what is passing for the "standard of care." When it comes to osteoporosis, the bar has been set incredibly low.

It seems that each of us has our own individual horror story -- yet they are all connected.

Mordita

Huessysignoret:

My doctor told me that I needed a second DEXA a year and a half after my diagnosis to see how I was doing, mainly because I said I was not going to take the Fosamax. (Actually I took two pills and stopped).
Also I asked for the bone density test the first time, she thought I didn't need it. She was surprised as I was with the results, but immediately prescribed the Fosamax.
I will have my second DEXA October 6th and will have to wait for the results, and I will post them as soon as I have them.
In the meantime I love to read the members stories and I learn from everybody.

juliemarie

Thank you, Charlotte. My feelings, exactly. I have even said this to my doctor who really is very sensitive to her patients, their health and treatment wishes, but she does rely on Big Pharma.

It seems that doctors have suddenly forgotten the 'do no harm' part. Don't forget, Big Pharma never took that oath. I do think it is the responsibility of the doctors to enforce this and not climb into the loft with the pharmaceutical companies.

In defense of doctors, when my husband was so ill and on the brink of death, six months after we were married, and we were both screaming 'try anything, please.' They would not. They conducted their research and treatment very conservatively. My husband survived for twelve more years. This was at New York Hospital/Cornell Research. Hard to find these doctors but when you do, hang on to them.

Charlotte1215

Juliemarie, thank you for your response, and I'm sorry for your loss.

Yes, we do need to hang on to the doctors who work with us on our problems, whether it is osteoporosis or something else. So many of us (most?) haven't found "that doctor" yet.

I read your story on your Inspire site. YOU inspire me. Thank you.

juliemarie

Charlotte, I'm glad you have brought up this subject in its most basic form.

Thank you for your consoling words but my husband and I had a wonderful life together, knowing that there were health issues every day. We met them as well as we could. We came to understand that many times the best treatment is good health practices.

So, it does become a partnership with our doctors as we do our best to maintain or regain our health.

huessysignoret

Charlotte, et al -- it occurs to me that I've seen a lot of postings indicating that for the first two years on bisphosphanates, DEXA scores tend to improve, but then subsequently decline again. Perhaps that's why your doctor didn't recommend another scan sooner? On the other hand, if these drugs do indeed show a "false positive" in the beginning, only to fade away after a couple of years, that's something we all need to know (and I suspect that is very much what's happening.) Whenever I'm in a pharmacy next to a woman who's filling a prescription for something like Fosamax, I want to scream, "Please, don't do it!" But I keep my mouth shut.

pgreene

I can understand why a DEXA scan is only needed every 2-3 years because not much improvement and sometimes no improvement is going to be shown within that time frame. Every two years hasn't shown much but if you take my first score of -2.5 in 1996 and compare it to my most recent score of -1.2 in 2008 you can see much improvement. But 2008 wasn't any different than my score in 2006 so it actually took 10 years to show some definite improvement. So I disagree with the doctor that said osteoporosis can never improve. I am living proof that it does! BTW, I am only 46, still premenopausal, and still fracture-free.

On the other hand, I can definitely say I would not want to be on a drug for 5-10 years waiting to see if my condition had improved or worsened. I think research needs to focus on finding new testing methods so we can determine bone quality and not rely on DEXA scans.

I also think that until it becomes public knowledge of the number of younger women (under 45) that are being diagnosed with the disease not much will be done in this area. Young people are expecting to get osteoporosis when they are "older" and not taking proper care of themselves now. We need to try to get some attention from Dr. Oz, The Doctors, or Oprah that this isn't a disease limited to elderly women but it's affecting the general population more than people realize. I hope I am making sense here. I am so tired that I can't get my words formed correctly.

Peggy

millie123

pgreene: You are correct here. I have been touched by those reporting a teenage son or daughter affected. We also have a pregnant person on this forum. Perhaps we should write to Oprah and ask that she suggest that her audience members join inspire. That would apply to more than one disease. Or maybe she could invite Dr. Cannell or some of the other doctors prominent in the field and do a series of shows. That ought to shine a light on the problem.

Loods

After 2 dexa scans showed severe osteoporosis,
(-5.9 followed a year later by -6.0) my Specialist said "there is no point in taking any more. Your condition is at the level where we can't improve bone density but merely try to stop broken bones"

My density didn't improve on drugs but they seemed quite pleased that it hadn't got much worse! I found it very disappointing, but then maybe I was hoping for too much.

At the moment I am fracture free and have been since coming off the biphosphates two years ago but my worry is when I reach the menopause (currently 47years old) I have been told my bones will become much more fragile. What then? Currently the options seem poor. For now I will continue with the natural approach and hope if I need drug assistance in the future something new with fewer side effects will be
there for me.

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