I got a dexa scan before 65 because I am a poster child for osteoporosis. Wanted a base line.
My daughter is taking osteoporosis drugs and has scans because of her cancer treatments. She has plenty of doctors who advise her so I’m not. But it sounds like they re treating her now so she doesn’t have issues later. She’s also in forced menopause.
Any treatment options I’m for if it keeps her cancer from coming back. She’s very invested in not having a reoccurrence.
No one size fits all. I do know that after I got my first scan, it was motivating to be more consistent with exercise and taking calcium supplements.
@abasket I don’t have strong feelings about meds. I have been in the osteoporosis community for 20 years and am just sharing what my doctors and resources and peers have taught me. Thinking on Prolia seems to be changing toward getting a boost with 1-3 shots then Reclast or Fosamax, often after Evenity or another treatment to get more time on treatment.
I gather you are aware of rebound but many doctors are prescribing Prolia without telling patients about it- or so I have read on another forum. And some doctors even have patients stop without follow-up, which means an abrupt and deep drop in bone density and even more intense rise in fracture risk. Doctors also put patients on Tymlos or Forteo after Prolia which is not effective (see McCormick and Leder).
Others are reading this forum. Clearly you are informed but others are not. And several doctors have told me outright that they just don’t know- don’t know how some meds work, how to sequence meds, what long term approaches might be. And there is no new treatment in the pipeline. Studies contradict each other.
The history is of patients being guinea pigs, often the case with post-marketing meds. First bisphosphonates were a godsend, and then jaw necrosis and atypical femur fractures started to happen. Next miracle was Forteo, but that was limited to two years (and at the time a cancer black box warning was on it and it needs follow up to “lock in” gains. Next godsend was Prolia which everyone told me would rescue us but then rebound was discovered. Tymlos same as Forteo. Now Evenity (2019 approval) is the new miracle drug but they thought it would build bone for the whole year and it actually only raises P1NP for weeks: otherwise it is a mild anti-resorptive. It inhibits sclerostin which has functions all over the body. My “world class” endo told me they have no idea why it works so well. I am waiting now to hear what unforeseen side effect emerges after a few more years out. I could only tolerate it for 4 months. Hard to trust anyone honestly but I threw my hat in with my endo a long time ago.
Mayo Clinic Connect is the best forum for osteoporosis. Inspire is not helpful. "Great Bones’ by Keith McCormick and Ben Leder’s video on You Tube. Most people on this thread are not dealing with serious situations yet so if this all seems over the top, understand where I am coming from.
@gotham_mom is it possible your bone loss may have come from suppression of estrogen, not from tamoxifen. Were you on Lupron? I am curious because SERMS seem to be the only thing left for me!
I’ve never taken Lupron. I wasn’t on any prescription medication prior to Tamoxifen aside from occasional antibiotics when I was sick over the years, which was rare.
Re protein: I have been using the flavored tuna packs. Starkist Hickry Smoked–110 calories, 18g protein, with a very short list of ingredients. And they are cheap. I even found Starkist and Bumblebee packs at Dollar General for less than $1.50 each.
Since this is a college forum and probably a younger crowd, posters here may not yet share the frustration we older folks feel. Coincidentally here is a post from someone else on the Mayo forum:
Think of “our own meds,” Prolia and Fosamax. How long did it take for the medical establishment to notice that Prolia can cause multiple fractures when you stop taking it? I checked on Prolia, looks like it was 6 years after it’s approval that the first papers appeared considering the multiple fracture dangers. Six years after that my excellent internal medicine doctor still seemed unaware of the problem. And someone having 6 vertebrae collapse after they missed a Prolia shot by 3 months, that shouldn’t be that hard to notice, right?
I never do any yoga, and I can’t think of any of my doctor friends who do either. I don’t like activities that try to force flexibility. Gentle stretching is fine, but a lot of the yoga poses put a person into pretty unnatural positions that they wouldn’t think to go into otherwise. And yes, people with osteoporosis sometimes do get compression fractures from yoga class; I think it was the Mayo Clinic that reported on this.
As you can see, this is a constant topic on the Mayo forum: this one is one of three in the last 10 minutes!
Hello,
After almost 2 years on Prolia, I moved to a new state and new endocrinologist. She took me off Prolia because she felt I was too young (67) to be on it for the rest of my life. I agreed to get a bone density and revisit at the next appointment. In the meantime, (3 months) I was diagnosed with two compression fractures in my spine. Not sure where to go from here. Note to self and anyone reading. DO NOT go off Prolia without a plan going forward.
I am not hardcore into yoga, but I do some yoga workouts that focus on stretching and strengthening. I bought a book by Margaret Martin that helped me learn what to avoid - she is a PT who focuses on exercise for bone health, with particular emphasis on those with osteoporosis. I modify poses all the time.
Like @kelsmom, I’m not into hardcore yoga. I go to a senior class once a week. It focuses on strength and balance. The instructor focuses on yoga positions that take into account that many, if not most in the class, have osteopenia or osteoporosis. I also try to keep up with yoga during the week, focusing on strength and balance.
My primary exercise the past 10 years or so has been yoga. A doctor suggested I start yoga to “stretch” after visiting with various aches and pains (horrible sciatica, shoulder pain, etc.) I got very, very lucky and started my practice with a yoga instructor with a strong background in PT. He specialized in working with older patients and he tailored my classes to meet my needs. Once I was diagnosed with Osteoporosis, we discussed together how I would adjust my yoga positions to not put stress on my spine. I moved and now attend yoga classes with several different instructors. I tell each one about my Osteo, and explain what I can and cannot do. I sometimes look around the class and see others doing crazy, unnatural positions, but I stick to what I can safely do. Much of yoga is weight bearing and practicing balance - both great for people with Osteo.
Margaret Martin looks great and I will check out her videos
Am I the only one here on Evenity?
When I broke my wrist last September, and it took a long time to heal, the rheumatologist encouraged this.
I’m another 5’ gal, thin, exercised, Pilates. Mostly I now work out in the pool.
I’m a pusher, not a coaster. In the yoga world, that translates to wanting to do everything. It’s been humbling to come to the realization that I don’t need to do what others are doing. It’s always a work in progress.
One of the things that I have been working on is proper posture. I am amazed at how much taller I look and how much stronger I feel when I stand properly. Margaret Martin has information that has been helpful in this endeavor. It’s been difficult to constantly remember to stand properly (which isn’t the same as simply standing up straight). I do some stretches that my chiropractor recommended to help, as well.
Our tai chi class has Qi Gong as well, and I can do it in my small studio!
@kelsmom Standing straight becomes complicated with fractures I have kyphosis and scoliosisfrom the compression fractures and have lost 3 inches. Not yet a dowager’s hump. But I have to tell tai chi teachers in advance because it isn’t really a posture issue- it’s structural. The shortening of spine causes lots of issues with GI, breathing and heart. Not much room in there. Tai chi, Qi Gong and breathing help me expand what there is.
Margaret Martin is the only PT I have run into who addresses safe exercises for those with vertebral fractures.
I have kyphosis and scoliosisfrom the compression fractures and have lost 3 inches. Not yet a dowager’s hump. But I have to tell tai chi teachers in advance because it isn’t really a posture issue- it’s structural. The shortening of spine causes lots of issues with GI, breathing and heart. Not much room in there. Tai chi, Qi Gong and breathing help me expand what there is.