Treating Osteoporosis: What works for you?

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.

@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!

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.

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.

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.

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.

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 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'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

Hello @awesomesauce17,

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.