Treating Osteoporosis: What works for you?

I'm really confused about how this works is this a reply from a chat forum?

I have been on Forteo since April 2017 and it is helping. But, I itch, a lot. I can't sleep from the itch. I think it is from the Forteo. Have you had that experience? If so, what did you do about it?

Thanks

To tiny 33 - This is a long excerpt from a web site that states at the top "no longer accepting notifications on this website". I wonder why it was taken down (maybe complaints from drug companies or their affiliates?). Anyway, the information given by Tom Huntington as answers to readers' questions confirms what I have read in many hours spent researching this subject on websites including Mayo Clinic, Johns Hopkins, Better Bones and User Reviews. The following is long, but worth your time to read it. I' d like to add a bit of my own advice: don't do anything until after your next bone scan and ask your doctor for the results (they don't always tell the patient automatically). The excerpted text follows:

Susan Kleinhofer July 17, 2008 • 10:33 pm
I’ve been prescribed Forteo, which has been in my refrigerator for a month. I am afraid to take it.
Does anyone know how Forteo compares with Reclast?
How common are adenomas which prevent calcium absorption? Would my endocrinologist likely have checked for something like that if he already knew I had osteoporosis? I am 59. Was shocked to find out I had osteoporosis six yrs ago, then was prescribed Fosamax which I took irregularly at best. I fell off a ladder a few years ago, shattered a leg bone, a commminuted tibial plateau fracture, and what a wake-up call that was. Eleven screws and a few plates in my leg. Now I’ve been prescribed Forteo after not making much progress on my bone scans. I make myself walk a few miles a day, every day. I feel better over all, have more energy and I feel like my balance has improved. I use a treadmill in winter. I am not a fearful person at all, but boy am I afraid of falling on ice now. What do readers think of Forteo, Reclast, and does anyone know about taking Strontium instead? What about the argument that taking bone building drugs like Forteo will cause the bone to become weak because it does not make bone on its own? Lots of questions. Thanks for any input. SK
Tom Huntington July 18, 2008 • 12:44 pm
To Leslie
Sadly you’re right, and I believe the fundamental reason for this is the general ignorance of scientific methods by doctors. Although they like to call themselves “medical scientists,” in fact they have almost no training in scientific methods such as you have with the “hard sciences.” For this reason they do not know how to properly construct an experiment and correctly interpret its results.
For doctors the only concept they have of “science” is the “double-blind placebo controlled experiment.” In their world, paying attention to “anecdotal information” is not science and therefore any mention of success by any non-pharmacological treatment is rejected.
Because most doctors have not taken courses in the hard sciences they are not aware of the simple fact that all science starts with careful observation. For them, science only consists of stating an hypothesis, which seems to always concern the effectiveness of a drug. And when it comes to experiments, the concept of isolating a single variable is apparently unknown.
Not to be left out, of course, is the nearly total lack of knowledge of math and statistics. In most of their so-called “studies” the results are always stated in such a way as to imply a causal relationship when in fact the study shows no such relationship. And to add frosting to their cake, everything is stated as a relative risk reduction, rather than absolute risk reduction, in order to create a banner headline.
I am not optimistic. As I see the situation, huge amounts of money are spent on pseudo-scientific nonsense, and as a result real scientific inquiry as to the biological nature of various diseases is thwarted.
I will add one more observation. I have seen doctors in other countries as well as the US, and I would say that in general doctors outside the US are better trained. This is consistent, of course, with the surveys which show the US healthcare system comes up short in relation to other countries. No surprise from my personal experience.
Gail Perry July 18, 2008 • 7:18 pm
“In their world, paying attention to “anecdotal information” is not science”
That’s because it’s not. 🙂
Tom Huntington July 18, 2008 • 10:35 pm
Gail Perry,
I know you are suffering and you mean well, but it is evident you do not possess a degree in physics, as I do. The fact is there can be no meaningful progress until a fundamental understanding of the nature of osteoporosis is elucidated. Such an understanding does not exist today, and in my opinion it is the direct result of an inadequate grounding in scientific research by the doctors who carry out their “studies.” It is clear that a collaboration between physicists and physiologists needs to take place, much as Norbert Wiener did years ago.
Michael July 21, 2008 • 12:46 am
#79 has a good point when he says: For doctors the only concept they have of “science” is the “double-blind placebo controlled experiment.”
Doctors don’t realize that by requiring double blind studies they are causing a bias towards pharmaceuticals. It’s very easy to do a double blind study with pills. One group gets the pill with the drug, the other group gets the pill without the drug.
How would one do a double blind study comparing Fosamax to weight lifting? It pretty much can’t be done. And there is no profit motive for anyone to do one. Even though strength training would probably benefit the great majority of relatively healthy people prescribed Fosamax, as far as most doctors are concerned there is no “scientific evidence” for it. So they don’t mention it.
voracious reader July 21, 2008 • 9:18 am
In regard to #79 and #82, again this is why I recommend that people read John Abramson, MD’s Overdosed America. Not only does Dr. Abramson explore “statistics” and how they relate to clinical trials, he discusses at length the designs of clinical trials. Now that’s were everything gets sullied. Often, when the clinical trials are designed, they must decide, will they be comparing a drug to a placebo or to another drug, or lifestyle. What makes the design of the trial even more questionable is the sample population that they use. Often a sample will be “cherry picked,” meaning, the sample population will have no other health risks except for the illness that the medication is being tailored for. Once a medication is approved it is usally prescribed for an entire “population.” The problem with that is twofold. One, extrapolating who may actually benefit from taking the medication is not an exact science. An example is giving statins to women who are at low to moderate risk of developing heart disease, or of the recent debate caused by the Pedicatric Association’s recommendation to give statins to children. Secondly, if you are prescribing a medication that has been approved but the sample was “cherry picked,” would the medication adversely affect a person who is on several other meds and has several other illnesses?
Giving the pharmaceutical companies the upper hand of the design of clinical trials has become, I believe, the worst decision that the NIH and the FDA has ever made.
healthinfo July 21, 2008 • 2:08 pm
Re: # 63
Many thanks to K Cody of the http://www.american bonehealth.org for making a little extra effort this morning confirm what has been expressed by Healthinfo and others.
Per KC, “So where is the truth in all of this information? Sometimes the truth is buried in the fine print, sometimes the design of a study creates faulty conclusions. In the case of Ms. Parker-Pope’s article, she admits in the article that cases are rare.”
And how right she is. This story is about a somewhat rare adverse side-effect. So, a look at the fine print at KC’s website revealed more than KC might have wanted in the fine print. And more than other websites, one by Merck & Co., might want exposed.
Fosamax and its companion Fosamax PLUS D seem to have more important and frequent side effects as found at http://www.drugs.com/fosomax.html and http://www.rxlist.co.cgi/generic/alendron_wcp.html@W
A visit to Merck & Co’s own website for this drug should make you think more about this prescription drug. The list of warnings, contra-indications and adverse side effects is just too long to repeat here and are not limited to rare cancer or dental issues.

@tiny33

Thanks for your reply. If you are not seeing an endocrinologist, I would encourage you to find one. This type of specialist is best able to deal with problems related to osteoporosis. When you do get an appointment, it might be wise to ask the specialist to check on the parathyroid hormone levels. As I mentioned earlier this is often the problem with bone loss.

@tiny33, if you are comfortable sharing more, may I ask what areas of bone are experiencing the most loss (spine, forearm, etc.)?

Teresa

I have not had that checked. Never heard of it. And no I am not seeing an endocrinologist. Just my GYN and my regular Dr just left. Trying to find a new one.

Hello @tiny33 and welcome to Mayo Connect,

I am happy to see that you have posted about osteoporosis. You mention the need for a knowledgeable doctor. Are you currently seeing an endocrinologist?

Many of us with bone loss have parathyroid problems (this is different than the thyroid). Have your parathyroid hormone levels been checked?

You will find, as you read the posts, that some of us take meds for bone loss but not everyone does. There are many different types of meds, so Fosamax is not your only option.

We look forward to getting to know you better and hope that you find support and encouragement here!

Teresa

...i HAVE TAKEN THE PROLIA INJECTIONS 11 TIMES WITH NO SIDE EFFECTS AND GOOD RESULTS...HAS ANYONE TAKEN THIS FOR A LONGER PERIOD? ...IF SO WHAT HAS YOUR DOCTOR SUGGESTED LONG TERM? TO CONTINUE USING PROLIA OR OTHER FORM OF TX??

Thank you for the encouraging words. I have a bone scan at the beginning of next year. And would like to see the research paper. Thanks

You are doing all the right things, except for the worry part. Your body has told you that you do not do well with these osteoporosis drugs. I was on Fosamax for 8 years, had a bone scan every two years during that time, and every time my bones were worse. (A friend of mine had the same experience - she had been on Actenol for years.) I have been off Fosamax for 5 years and, since getting off of it, I have had two bone scans, the last one only a month ago. Both scans showed that my bones were stable - i.e., they hadn't gotten worse. These drugs may help some people but not everyone and some have had horrific side effects (call them reactions). These drugs are being pushed by the manufacturers who are making billions (that right!) off of them. I think the doctors should be pushing nutrition and exercise and should be prescribing these drugs only as a last resort. One thing that has not been talked about is how the clinical tests are done. There are scientists who have serious questions about the accuracy of these tests and I have a research paper on this that I could send to you. So stop wrorrying and enjoy life!!!