Treating Osteoporosis: What works for you?

Yes. I got both hips and lumbar spine scanned. I have put my scores in my bio, if you want to click my username. This was my 4th scan since 2006. Unfortunately No doctor ever told me we should get our scan done on the same machine each time for an accurate comparison....I found out through my osteoporosis research and came across that. To make the comparison even worse than not being on the same machine, my scans were also on a variety of *brand* machines. Hologic has a different report format than GE does, for example....two of the common brands...the Hologic reports are much clearer to understand., IMHO. If I ever get another scan again I'll be sure to get one on a machine that has a Trabecular Bone Score (TBS) application on it, which I learned about after doing the scan. A TBS score apparently gives additional info about the bones....more about the structure that's not strictly the bone density, if I'm using Sara Meeks' (physical therapist) terminology right. She does seminars and has videos on YouTube, etc., and seems quite renown. Hopefully Echolight or some other non-radiation method will come to San Diego soon....another option instead of dexa. So much to learn.....

Good afternoon @toni7. Your concerns are legitimate. And the basket of options can be extremely confusing. There are three rather new medications that require injections and have been developed to build bone. The one with the longest medical history is Forteo. The next one is Tymlos. Both are taken for two years. The newest one is Evenity which not only builds bones but also protects the bone from reabsorption during the one year schedule.

Because of uncomfortable side effects with bisphosphonates, I chose two years of Tymlos. My scores for hips returned to the osteopenia level and the other scores remained stationary which means they held their own. I had no side effects except for the first few days. They were unspectacular.....and disappeared in a couple of weeks.

Then came the hard part. What next? Moving to Evenity would mean a rapid building of more bone and a less active effort at protecting as the research begins to show. Since my unfortunate reaction with Boniva, it appeared that I only had one choice and that would be Prolia.

I did finish a year on Prolia with concerning side effects and unimpressive Dexa scores. I secured periodontist exam reports indicating that so far there was no damage to my jaw and that my teeth would probably not need any surgery or implant treatments.

Nothing felt right to me so I asked for a consult in Endocrinology at Mayo Clinic. Here is what I discovered. At the age of 77, when I was told that I needed to begin the osteoporosis medications, that recommendation was way too aggressive. I did not need any bone-building or bone protection at that point based on my scores. There seems to be some anxiety among endocrinologists and other clinicians to make sure everyone gets going on something.

So......now I was in a "pickle". Evenity was too new without enough research for me and only possible for a year. Again....then what? The Mayo endocrinologist went back to look at the once-a-month biphosphonate dosage which resulted in side effects. What if you took the bone-protecting biphosphonate, alendronate, weekly instead of monthly? The dosage of one infusion a month was just too heavy for me.

So.....four weeks ago I began to take one tablet, not an injection, every Monday morning. And as you might be beginning to realize......it is working. No side effects, no joint pain, no jaw or teeth or gum pain. No nausea or injection soreness.

So just backing off from the more infrequent heavy doses is the answer for me. It might also be worth discussing with your clinician. Questions??????

May you be safe, protected, and free from inner and outer harm.
And thanks Mayo Clinic.

Chris

@callalloo not sure why you think the femur score is not important. Hip fractures are very disabling. I wonder if I "misspoke" awhile back. My report says the femur neck is not reliable to measure change. That may be particular to me, and it may not mean the femur neck score is unreliable. To be honest, I don't know what it means. But the femur score is different from the femur neck score anyway.

Wow, do I agree with you. My mother died after a hip fracture. Although they tried surgery to repair it...she never walked again and stopped talking or engaging in any way. I would drive two hours to see her on Friday, place her in a wheelchair and take her through the rose garden. She had no reaction........just stared straight ahead. For her, quite an active run-a-bout......this was the end.

Unfortunate and preventable???????
Chris

@callalloo not sure why you think the femur score is not important. Hip fractures are very disabling. I wonder if I "misspoke" awhile back. My report says the femur neck is not reliable to measure change. That may be particular to me, and it may not mean the femur neck score is unreliable. To be honest, I don't know what it means. But the femur score is different from the femur neck score anyway.

Hi everyone, I just joined this group and I think it is wonderful. I just had a dexascan for the first time and my numbers weren't good..... femoral neck, -3.8, total hip -3.7, lumbar spine, -4.7. My doctor wants to put me on Fosamax, but I'm afraid of the side effects. What would you do? I'm in my late 60s, tall and thin.

I personally would get a second opinion. Not because of any reason to distrust the doctor's suggestion, but because treating osteoporosis may require pre-thinking a long-term strategy over a number of years. And that means paying attention to which drugs, if taken, might make other good drugs not possible or work less well.

Fosamax, a biophosphate, doesn't preclude other possibly-better drugs later. But there are some newer drugs that work better if taken first. So treating osteoporosis is an evolving field as newer drugs have become available and a doctor with a specialty in treating it is most likely to know all of the options. Including when or if the somewhat-controversial estrogen therapy could help. (Being thin is associated with a lower general level of estrogen and possibly an earlier-than-average loss of the so-called estrogen-shield that protects bones.)

Or you could start on the Fosamax while looking for a second-opinion specialist. I just think, with those numbers, you might want an overall plan of action for comfort while you research other non-medical things you can do in addition to drugs. That way you'll know you're using all the tools currently available to address this and maybe reverse some of the numbers as well.

Thank you so much , Callalloo, for your thoughtful reply. I made an appointment with a rheumatologist, but there are no openings for a month. I will try to do some weight bearing exercises until then. I was always very active until Dec., when I had to retire due to chronic lung issues. I'm used to taking all kinds of meds, but Fosamax was the most worrisome. I really appreciate your advice. This is such a great source of information. Thanks to everyone.