Mayo Clinic Connect
Hi. I’m new to the site and am interested in treating osteoperosis. I’m 39 yo and recently had a bone density that showed I’m at -2.4. So, going through the intial “I can’t believe it” stuff. 🙂
Liked by Mamacita, Volunteer Mentor, Chris Trout, Volunteer Mentor, Leonard
I’m new on here. I’m 51 have osteoporosis. I tried Fosomax with bad side effects and the 6 weeks in allergic reaction. Now I’m afraid to take these drugs. I can’t seem to find a very knowable Dr to help. Just trying exercise and caluim but worry alot
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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.)?
Liked by Martin Jensen, Volunteer Mentor
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
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
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.
Liked by Gail, Alumna Mentor, lioness
Hello, I’m new to this group. My osteoporosis is not improving and after a dexa scan my doctor wants me to go on a drug. Tried one before and experienced a REALLY bad reaction. It was Ibandronate Sodium. Don’t know what “family” it’s in. Having horrible pain when lying down.
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?
I’m really confused about how this works is this a reply from a chat forum?
May I ask, are you replying by email to a notification you received from Mayo Clinic Connect? If so, you are indeed replying to a discussion group. I suggest that you scroll to the bottom of your notifications and click on VIEW & REPLY at the bottom of this notification (or any notification email). If you click on VIEW & REPLY, you will be brought to the full discussion the website and it will be easier to read through the whole discussion and figure out where you are in the discussion.
I’m not sure what I’m doing to be honest with you. I was just trying to find a support group for people with Chiari malformation so that I could find others like me that understand what I’m going through and can help me understand my illness and share ideas with me about how to make life easier on myself in between now and the time I can have my surgery done and of course others that I can lend support to as well
Liked by Colleen Young, Connect Director
You are young to have osteoporosis! I encourage you to pursue why you do. Same with me and eventually found out it can be a symptom of other disease. In my case something called CVID or common variable immune deficiency. Good luck!
I was diagnosed with CVID, Hypogammaglobulinemia 5 Year’s ago and am infusing immuglobulin at home once weekly. I was Osteriopenic in 2012 but rapidly turned to Osteperosis by 2014 at age 54. I refuse to take biophosphates. I have tried to research the relationship of osteoporosis with CVID as I believe CVID has had a direct impact on my bones. I have found little correlating Documented studies or information. As most Dr,s today have no idea about CVID (I have to educate most of my dr,s) my Endocronologist agree’s my theory that if My bones work “overtime” producing more “B” cells in attempt to compensate for the sluggish non-maturing ones that possibly this overwork and production is depleting my bone health. Tho unfortunately she has no education or experience with CVID so she doesn’t understand how to investigate further optional ways to look at the treatment, cause and or effect on osreoporosis. You mentioned above that osteoporosis is your reason (or symptom) of CVID. Can you share where I can find research on this. Can you share how you have confirmed this and explain the correlation? I am urinating excessing amounts of Calcium (40%). Standard for woman is less than 20%. I did the 24 hour urine twice as my Endocronologist could not believe the massive loss of calcium. She tried me on a dieuretic but my body just rejected it and I became violently ill. My bone density is 3.4. Any information would be greatly appreciated! Thanks!
I was just diagnosed with -2.6. How is the Atelvia working for you? I have my first appt. with a rheumatologist in April 2018. Nervous about what meds he might suggest. Any advice from you or anyone would be appreciated. Thanks!
I took Fosamax for about five years. It did improve my numbers, but stopped taking it after very painful leg/bone cramps at night woke me up and increasingly took longer to stop even after getting up to walk and stretch. Also, though it didn’t upset my stomach, I experienced a soreness and a feeling that I can only describe as if I’d eaten something with acid in it with a burning-type of feeling. I haven’t taken any prescribed meds now for soon six years and though numbers aren’t what my doctor thinks they should be, I have decided to keep on my walking program and eating healthy as I feel 100% better since stopping the Fosamax.
Liked by Martin Jensen, Volunteer Mentor, Gail, Alumna Mentor, lioness
Fosamax and Atelvia (risedronate) both are classified as a bisphosphonate medicine. I was on Fosamax for 8 years and had bone scans every 2 years during that time. Each bone scan showed bone loss. I am currently at -3.6. My doctor took me off Fosamax and 5 years ago and have had 2 bone scans since going off of it. Both scans showed that my bones are stabilized, i.e., they haven’t gotten any worse. I have increased my exercise and intake of calcium. I feel great. I am not going to take any chances with any bone drugs, either the pills (bisphosphonates) or injections (Forteo and Prolia). I feel it’s like Russian roulette – and I’m not willing to take the chances of having a bad side effect – some of which are not reversible.
Thanks, @jaleen . My instinct is to avoid these scary meds and work on calcium from food and weight-bearing exercise, weight training, etc. Altho I do all those and it didn’t help, evidently. I have osteopenia in my family history and my doc says it’s genetic. I’m 53 and mad as hell. Hope my doc has better solutions.
What has occurred to me is that our mothers and grandparents had never heard of osteoporosis and they lived their daily lives without fear. I think too much emphasis on this – and I blame the drug manufacturers who are making billions on these drugs – and getting nice tax breaks now with the new Tax Bill so they are even richer – along with doctors for promoting these medications – without even mentioning that there can be very serious side effects. As in everything else, we do the best we can each day and leave the rest to God. There is one thing we can do besides exercise and good nutrition and that is meditation (which I haven’t done but plan to try in the New Year).
As to side effects, I suggest that you google the medication your doctor wants you to take, i.e., Actinol – User Reviews and you’ll read about the experiences of real people with this drug (or any other). For what I was researching (Forteo – an injection drug), for every positive review, there were 4 negative ones, on the average. In my experience, the rheumatologist that I was referred to didn’t even mention that there could be side effects with Forteo. I found that out by going online and reading everything I could find out about this drug. When I went for my 2nd visit, I told the doctor that I decided not to do it and he said (and I quote), “You don’t need to come back.” He never once mentioned diet or exercise. And he was the senior doctor in his department!
One other thing – there is more in our body than just bones. The bones we have are supported by muscles. Why aren’t the doctors talking about strengthening the muscles around the bones? Most of my exercies (which I learned in some sessions of physical therapy) are to strength my back muscles. If the exercises help my bones too, that’s a bonus, but not the main reason I am doing them. For my bones, I do the treadmill and stationary bike.
Stop worrying and be happy and thankful for what you have! That’s my advice, for whatever it is worth.
Liked by miche
@jaleen, Well said! I have refused to take the biophosphates as well for three years, My now third endocronologist says that the 3-24 hr urine tests showed extremely excessive amounts of calcium loss in urine, (triple the % of a woman my age)! She cannot believe other endo’s didn’t address instead of just trying to push fosamax! ! I also have a rare immune deficiency that my B cells do not mature into antibodies. My body continues to reproduce B cells in my bone (thus overworking and potentially depleting the bone) to accommodate for lack of antibodies (b cells matured). I infuse plasma every week filled with antibodies to help ward off germs, bacteria’s, etc. The endo’s just don’t pursue CAUSE and treat cause,,,instead they throw the caustic drugs into our bodies to make up for the depleting bone density! Find & treat the cause, instead of trying to refill a tank with a hole in it!!Sorry your Dr was so rude, It is just tragic our medical industry is no longer a profession of care, or a yearn for investigation of causes that will possibly cure not harm the patient!
Great point about osteoporosis being around long before we had a name for it! There were no tests for it when my grandparents were living, and my mother who is 97 years old has never had a scan for it and doesn’t want one…so who knows??? I walk the treadmill almost every day, and I stress “walk”. Being aware and careful in the activities I do is part of the changes I’ve made since finding out I have osteoporosis and stopped taking prescription drugs for it. I haven’t stopped participating in the activities I love, I’m just more careful and mindful when I’m doing them.
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