Treating Osteoporosis: What works for you?

Thanks for this helpful information! I am 75 and was diagnosed a year ago with osteoporosis, for which I took one Prolia injection.

Hi @barbiep I was just diagnosed with osteoporosis after 10 years without a dexa scan. I am slso on prednisone, just started in May, for Giant Cell Arteritis. I take Calcium Citrate with Magnesium, Vitamin K, Vitamin D, Boron and Silica. There are some supplements that combine all those elements, but I can't find the references right now. Prunes are also supposed to be good - 6 a day.. My doctor prescribed alendronate, which I am taking reluctantly. I also found Carol Michaels and Sara Meeks to be excellent resources for specific targeted exercises for osteoporosis. Just google their names and you'll find information. Sara Meeks has a spinal decompression exercise, in which you lie on a hard surface for 15 minutes, breathing, knees bent, relaxing. I find it gives me relief and do it every night.I also bought a whole body vibration exercise plate, which has programs to increase bone density, after reading a paper about studies of this (it can take a year to increase bone density).. Amazon has a large selection of these.I chose the Eilison Bolt and so far, I am happy with it, doing two 15 minute programs a day. If you chose Pilates or Yoga for exercise, be careful, as many of the exercises involve forward flexion of the spine, deep bending and twisting which can cause spinal and hip fractures. @csday warned about exercises that curve the spine. In all the years I took Pilates, with a number of different instructors, in classes with women who were older than I am (70), I never heard an instructor warn anyone with osteoporosis not to do certain exercises. Well, I hope this helps and I wish you the best.

Medicare covers Evenity 100% because it is administered in the doctors office. My endocrinologist suggested a course of bone building meds first - Forteo, Tymlos, Evenity. Then 2-3 years with reclast treatment to stabilize the bone. If your doctor will authorize Physical therapy for spine they will design an exercise program. Ideas on YouTube abound. No exercises that curve your spine such as toe touches or sit ups.

@barbiep Thanks to windyshores for bringing up the Radius Assist program for Tymlos. I am also on the program and the cost is nothing if you meet their requirements for 18 months. They send it straight to the house every three months. The same thing happened to me, I quit for a month and then started back slowly. I am now over half a dose. I increase every two weeks. So far no side effects. Hoping to make my full two years. KLH

Just a reminder that the Radius Assist program provides Tymlos for free for18 months for those with incomes under a certain amount (high $30k's?). Also those of us who started low dose, initially tried full dose and had problems. An alternative to quitting entirely for me was to restart at two out of 8 clicks of the pen and work up. I called the company and told them they may be losing customers who balk at the side effects of a full dose, and maybe the company would like to advise doctors to suggest restarting at a low dose to patients.

@barbie60 I'm a few months shy of age 90, on prednisone since January for Giant Cell Arteritis, fortunately tapered down to 4 mg. A year ago my DEXA scan iowest T score was for my right hip, at 3.2, Z score was - 0.6. Now, of course I don't know how much my GCA treatment with prednisone has affected my bones. I had one injection of Prolia when my GCA was diagnosed . Now my doctor (Internal Medicine) suggests I consider other osteoporosis drugs and he set up an appointment with an endocrinologist. So I am especially interested in this discussion.
In the past I have taken several drugs such as Fosomax and Evista. besides Prolia, and also had intervals without any osteoporosis drug. My only fracture has been a fall on ice that resulted in a broken ankle 50 years ago. I am especially interested in the experience of very elderly women. Do they experience more serious side effects?
I have been eating milk products - yogurt, whole milk, cheese - to replace some of my calcium requirements since I like them and they agree with me. My doctor suggests I eat other calcium rich food instead . Do other people find that dropping milk benefits them?
Thanks Barbie60 and the others who have posted information.

@barbiep I was in pretty much the same position since I had osteopenia in January 2014 but never had another DEXA unit I fractured in 2019 and I suggested it. Plus, I was on prednisone which is a known problem for bones.

I confronted the doctor and he gave three flimsy excuses. I really had a good rapport with him but I just cannot risk my health if he lets things fall through the cracks like that so I have since changed PCPs. I actually miss him!
JK

Hi JK!

Thanks for your comments! I am still trying to get in to see the endocrinologist my GYN referred me to, but have been wondering about all the folks who mention taking a reduced dose to start. Good to get your docs’ perspective as well!

I’m set to start Medicare in Jan. so will be looking for best drug plan possible. I also get very sad when I think I wouldn’t be at a -3.2 spine if my doc didn’t wait for 9 years for a repeat DEXA following my -2.1 test. She says now she was “following guidelines”, waiting till I was 65…

I hope you continue to do well with Tymlos!! If given the option I think that will be my choice at this point.

Take care!

Hi, @barbiep Welcome to Connect.

I have been on Tymlos since March. Initially I had some slight light-headedness the following morning (I take it before bed at night) but that has passed. The only other side-effect that I can definitely say is from Tymlos is what people refer to as "puffy belly" which is actually fluid retention. It's a nuisance but I can live with that.

Some people start out with a lower dose but my endocrinologist said to start out with the full dose. Then if you do have a problem you can go to a lower dose and build up.

The only downside I see to Tymlos is the cost. I am on Medicare and so there is no assistance. Many people who are not on Medicare are able to get it at a greatly reduced cost and some even get it free!

This is the first drug I have been on for osteoporosis. I had a minor hip fracture in July 2019 which led to a DEXA. I had not had a DEXA for five years and my previous one showed osteopenia so I believe I should have. If you have a fracture that can make a difference in whether these expensive injectables are approved by your insurance or Medicare, even without having had another drug first.
JK

I’m grateful for everyone who has shared their thoughts so far! I will look into Vitamin K and will try to remain open minded about the drugs. Yesterday I had spinal X-rays to see if there has been any damage thus far - thankfully there hasn’t been. I guess stress has been causing my back pain. I think my doc agreed to order the tests because she dropped the ball by never counseling about osteopenia or having a DEXA redone even though I had advanced osteopenia back in 2012. I’m awaiting an appointment with endocrinologist but it seems there is a long wait. Meanwhile, while researching the anabolic drugs it seems they are intended for people who have had fractures or haven’t had success with bisphosphonates. Has anyone had a doc prescribe them as an initial therapy? Does it involve a battle with insurance? I start Medicare in Jan. and will be looking for an osteoporosis friendly plan!!

Also, does anyone have good links to exercises for osteoporosis in spine?

Thank-you and best wishes for all!