STOP! Don't do this if you have osteoporosis

@isabelle7 and @cehunt57 Forteo and Prolia are NOT the same at all. Forteo is an anabolic that builds new (quality) bone through the parathyroid pathway.

From Drugs.com: Forteo is a man-made form of parathyroid hormone that exists naturally in the body. Teriparatide increases bone mineral density and bone strength, which may prevent fractures. Forteo is used to treat osteoporosis caused by menopause, steroid use, or gonadal failure. Forteo is for use when you have a high risk of bone fracture due to osteoporosis.

Prolia, like bisphosphonates, is an anti-resorptive that builds bone density by reducing bone turnover.

From UpTo Date online: "Denosumab is a fully human monoclonal antibody to the receptor activator of nuclear factor kappa-B ligand (RANKL), an osteoclast differentiating factor. It inhibits osteoclast formation, decreases bone resorption, increases bone mineral density (BMD), and reduces the risk of fracture."

Prolia is different from all the other medications in the intensity of rebound when stopped.

Both need follow-up. Prolia needs follow up with Reclast (preferably) or alendronate.

Prolia and Forteo are entirely different classes of medications. It is better for many of us to do Forteo first. My docs avoid Prolia entirely because of the risks when stopping.

This is a great list for your husband, given his fractures.

But osteoporosis is different things to different people and some of us lift heavy weights, do squats, deadlifts, overhead press, run, jump rope, and use vibration plates. Without fracturing. We are all unique and it's really important to know our own bodies, how to bend over (using knees, thighs, and butt, but keeping back neutral) and how to create the impetus for bone growth. Despite what your PT suggested, sitting in an L shape on a couch with your feet up (or bending over in an L, without bending your knees) is a recipe for back pain and potential fracture. It's the opposite of sitting up with good posture.

Good luck to your husband, and to you! It's a journey, and T-scores are only part of the picture.

Just want to add I don't know where this warning not to slouch comes from. Our sitting position does not change the structure of our spine, to my knowledge. I assume most people without osteoporosis are also told not to slouch. With fractures I slouch in bed a lot, reading, because it is comfortable. That's me. It hasn't really changed my posture. Tai Chi helps keep me aligned, perhaps, but I definitely won't give up slouching 🙂

FDA would not have acted if there was not something very questionable on the website. Thank goodness for FDA holding companies accountable.

I agree. I weight train 5 days a week, do yoga 3x week (avoid deep forward folds) and do many of things things the author suggest not doing and I am getting stronger day by day.
Everybody is different, I'd hate to see someone recently diagnosed with severe OP as I have been and then follow these suggestions of what NOT to do.
I have to move to feel good and get stronger.
My spine T score is -3.7 or - 3.0 depending on which DEXA I choose to believe.
The author has legitimate concern with her husbands fractures but we're all not in the same boat.

@ldg001

There are always going to be people who are skeptical about anything and everything. And they could have good reason. I think the takeaway is we all need to figure out what works for us and use caution. Usually I will run things by my doctor who is Asian and open to alternatives. I had a naturopath but she's no longer in our area. I loved having her on board and should proably try finding a new one.

That is amazing how the oils have helped you and your friend. I know people who also swear by them. It's definitely something worth exploring.

@andreamayo

It is so true that everyone with osteoporosis is in their own phase of it and some have the abilities to do more than others. Unfortunately, for my husband (who has steroid-induced osteoporosis from taking high doses of prednisone for over the past year - which likely saved his life) exercise right now would prove disastrous. Of course that's not the case for everyone.

His lowest DEXA t-score was -3.4 a few months ago. We found out he had an issue when he had an x-ray or maybe it was a CT scan for something unrelated, that showed a compression fracture on his spine in 2/2024 that wasn't there in 5/2023. That raised red flags to me and I asked for the bone scan. That's when we learned he has osteoporosis and we've been trying to figure out the best course of action since.

The doctors didn't set any limitations or say he needed to do anything differently with the fracture so I contacted a physical therapist I know. He looked at all of his CT scans and x-rays and suggested a follow-up x-ray of his spine. His new endocrinologist agreed. I was worried because months had gone by and we had no idea what he should and should not be doing. I feared another fracture (call it intuition - he wasn't in much pain, and felt his low back pain was similar to what he's had in the past.)

The x-ray showed two new fractures. The doctor believes one was from emptying the dishwasher. Between the endocrinologist and physical therapist working hand-in-hand with one another, he's been restricted to no bending at all (which is so hard), no slouching on chairs, and no lifting anything that weighs more than 5 pounds. He's been doing his best to follow those instructions but I have to say it's very hard. Very restrictive. I'm trying to keep him as active as possible while staying within those limitations. If he continues to get fractures things could get so much worse for him and he could end up bed-ridden which is the very last thing we want. So for now, we must follow the doctor's instructions and pray.

I will say that since we have been much more careful and added acupuncture to the mix he's doing a lot better. He's continuing to taper down on the prednisone with the hopes of being off it in the next six months or sooner. That's if he doesn't have a relapse in PMR or GCA. Both horrible diseases themselves. That's why he's on prednisone.

I am so glad that you can do more and my hope is that once these fractures stabilize he will be able to start doing more exercises. He has exercised (weight lifting and then went to resistance bands) his entire adult life. So this is very hard on him.

The suggestions of what NOT to do on this thread was started to give people a place to share their stories and for others to glean from their experiences. Realizing everyone is not at the same severity of OP. I've learned a lot from this thread and have found the advice of others very useful and I hope others will as well. And I hope everyone understands that I don't believe they should all be restricted or have the limitations he has. Everyone should be listening to their bodies and talking to their own doctors. I highly recommend an endocrinologist for people with osteoporosis. We finally started getting answers once we found a good one. And our physical therapist.

@windyshores

Oh, Windy, you are so knowledgeable!! I am so glad I asked!!! We have settled on Forteo (starting in a week) and will follow with Reclast. I think you had suggested that and his endocrinologist agrees. I am so thankful we found her!! We had been dealing with a rheumatologist for his PMR and GCA, then osteoporosis from the steroids. It wasn't long before I knew I needed to find another doctor and I learned on here an endocrinologist was the best.

It's been a game-changer. I mentioned some of these drugs to the rheumatologist who wanted to put him on Fosamax (which I didn't think was best, especially after asking about it on here) and she'd not heard of any of the drugs except Fosamax. It's taken us two, maybe three months since she prescribed the Fosamax to finally have our prescription for Forteo. He has to wait one more week then he starts it. Not looking forward to daily injections since he asks me to give them to him. He has a weird aversion to needles after having to give his mom shots for diabetes from the time he was 8 until he went off to college. So I'm giving him his weekly Actemra injections and I'll do the daily Forteo injections as well. (His dad had a condition where his hands shook so he couldn't give the injections.)

I really appreciate you sharing this very insightful information. And I'm glad you told me about Prolia. We'll stay away from that and stick to Forteo and Reclast.

@ldg001 , @normahorn

We all have our own experiences. In the 90s I had an illness that was not well known to the medical community so I had to seek treatment outside normal Western medicine. Which was tough for me at the time as I thought doctors knew everything. Ha! Ha!

I had colonics done and those were not FDA approved either and people were secretly doing them. It was important to find someone who used all new tubing each time and who you fully trusted. Those colonics took me from feeling like I was always in a fog to lifting that fog and feeling myself, after about 6-7 treatments. I'd do it again if I had to (not that it was pleasant.)

Same with a chiropractor we had for years. So sad when he retired because he was like the best healer we've ever known. People flocked to him and he practiced his method very quietly and stayed under the radar because what he was doing was also not FDA approved. Yet it worked!! They offer it in Canada and people love it. Why it's not approved here is beyond me. It's the best form of chiropractic care we've ever had and he hardly ever cracked our backs or necks. He used a device, can't think of what it's called, that was gentle and it worked. It was truly amazing. My husband was told the only thing that would help him was to have surgery on his neck. As a last resort we decided to try this guy who we had heard was very unconventional. Well, after six visits his pain was gone and his doctor amazed at how his neck issue had resolved.

So sometimes the FDA gets it wrong. Sometimes they get it right. Sometimes it's worth the risk because nothing else is working. Especially when you know others who are using the therapy with success and you do your own research and ask tons of questions.

You are probably right. They just made it a little harder for me and others to find the info needed.....and they didn't shut the company down. There was and is not enough research for them to approve that site.