New diagnosis at 56 yo. Looking for advice on non drug therapies.

Posted by dmendell @dmendell, Jun 8 8:54am

Hi. New the this group. I was ver recently given a diagnosis of osteoporosis in spine from DECA scan results of -2.8.

PCP immediately jumped to advising reclast. My initial research on this route has terrified me.

I would appreciate any advice on non drug best practices and any recent feedback on working with Dr Doug Lucas or his competitors/peers.

Thank you!!!!

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I was 57 when I was diagnosed with a T-score of 2.8. I'm very health conscious and have always exercised (I was a dancer), used weights and ate a clean, organic whole foods diet so I was really shocked. I refused meds, thinking that if I just do more, do better, I could beat this. I told the doctor I would take 2 years, work harder than ever and build back my bones. Two years later I was at -3.2. I then realized that I would have to go on drugs to stop the decline. I went on Forteo as I felt it was the most "natural" of the drugs since it is parathyroid hormone. I had no side effects. First year I went to -2.8, second year I actually lost a little and went to -2.9. Moral of the story is, it's easier to save bone than try to gain bone. Had I gone on Forteo right away, I would have been out of the osteoporosis range. Hindsight is 20/20. That said, at your age you could look into HRT which might maintain your bones and with the right diet and weight training, potentially build some bone. I went on HRT after Forteo to maintain the gains and it appears that it has been effective for the last 7 years as my T-score remained steady with some slight gain shown this past year.

My opinion is that Dr Lucas is a charlatan. He's ridiculously expensive and hawks products. I'd steer clear of him as well as the Bone Coach, Kevin, who charges a fortune as well. I'd stick with Keith McCormick. He is legit, very knowledgeable and charges a reasonable fee for a consult. His book Great Bones is an encyclopedia of osteoporosis. He really knows his stuff and is not out to merely make a buck but to help people through.

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You are getting good advice here about medications and HRT, and I agree that any expert, with a few exceptions, who sells an expensive product or service is highly suspect. Since you specifically asked about non drug therapies, I will share my perspective, but emphasize that it is unique to me, and everyone has a different situation. I would suggest you first make sure there isn’t any treatable explanation for your low density, which requires testing, investigate if you need improvements in nutrition, and then encourage you to find a good weight lifting program with a personal trainer who knows what they’re doing. If it doesn’t increase your bone density, it may slow down the loss, and will at least strengthen your supporting muscles to help prevent falls and fractures. My DEXA results were like yours at your age, and I stubbornly refused medication. I am now 69, with a -3.7 DEXA lumbar T-score, but I also did two REMS which show a decent fragility score and a -1.8 lumbar T-score. I’m not relying on that just because I like the score better, but it did make me pause when the doctor offered Evenity this spring. He is supportive in my decision to continue waiting a bit longer, given that I’m doing all the right things otherwise. In the meantime, I have not fractured, which would of course lead me down a different path, and I have added supplements and paid close attention to nutrition, but the best thing I ever did was add significant strength training, if for no other reason than to make me stronger overall and more confident in how I move. All that being said, I think the meds are good, or at least improving. I’m just keeping an open mind and watching how people manage the complicated sequencing of maintenance, because that process is probably why I hesitate the most.

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I go to osteostrong and am in year 3. I think it’s been a good program for me. But I had an appointment with my orthopedic doctor today and he feels I should consider going on one of the drugs as my bones look like “egg shells “.
So here’s my question…Is anyone going to an osteostrong type program and taking a drug too?
Thanks for your help
Pat

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@maryandnans

I am also interested working with Dr. Lucas. I have never worked with a Dr online before. I guess that is how he works?

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Yes, his program is all online.

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@oopsiedaisy

I was diagnosed with osteopenia at age 53. Spine was -1.3 and hip was -2. I continued with HRT and weight training (both started at age 51). I was on a healthy diet at the time (lean meat, fish, veggies, fruits with minimal carbs) so I continued that. I also added a 1:1 calcium/magnesium supplement, Vit D, and Vit K.

My BMD continued to decline until I hit -2 in my spine and -2.8 in my hip. I hadn't done a lot of research on meds up until that point, only lifestyle. My PCP started me on Fosamax and I thought that was reasonable since my BMD was continuing to decline even with a healthy lifestyle.

Initial results were very good, with my spine at -1.5 after two years. However, my hips remained about the same.

After 5 years on Fosamax, I had a fragility fracture bending over a bathtub and pressing down hard on my ribcage. It was a partial compression (~15%) of T8 and it had a huge impact on my life. I would do anything to avoid another.

I stopped the Fosamax and was started on Tymlos then Forteo (generic). I had to switch to Forteo after my insurance revoked my pre-auth. Unfortunately, the Forteo just didn't work out for me.

At that point, I sought a referral to an endocrinologist at a metabolic bone disease clinic and she has been amazing. She tested me for many more issues than my previous rheumatologist. She wasn't able to find an underlying issue contributing to my osteoporosis but thinks there is a genetic predisposition as my dad had similar issues.

I started on Evenity a few weeks ago and have had no side effects. I am very happy with treatment at this point and hopeful that the Evenity will help prevent another fracture. I trust this doctor.

My point of this long post is to say that each of us is different and there is definitely no one size fits all treatment. It can take time to find the right approach but I would say to keep an open mind and don't dismiss the meds. Most of all, you want to avoid a fracture because it's terribly life-impacting. Good luck!

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Could you please explain how a spinal fracture was the result of excessive pressure on ribs from bending on a hard surfac?

It is not obvious to me how this happens. I can understand a rib fracture or bruise resulting from this pressure but not a spinal fracture.

Guess I should have paid better attention in anatomy class.......

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Have you researched and proposed other drugs to your physician? Why reclast? If he didn't explain it might be useful to ask him/her. Are you taking other prescription drugs. If so, it is easy to forget that they all have "possible" side effects.

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@gravity3

I'll chime in on the positive outcomes side.
Alendronate, forteo, evenity, Prolia .....no noticeable side effects with any. Effective for me and great gains with evenity.

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Count me in positive med results.
Over 21 percent bone density gain in my spine after 2 years of Temlos. Towards the end of my regiment,I did experience some pretty significant nightime leg cramping, that has resolved.

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@rjd

Could you please explain how a spinal fracture was the result of excessive pressure on ribs from bending on a hard surfac?

It is not obvious to me how this happens. I can understand a rib fracture or bruise resulting from this pressure but not a spinal fracture.

Guess I should have paid better attention in anatomy class.......

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I think it was a combination of extreme spinal flexion with pressure on the ribs attached to T8.

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@teb

I was 57 when I was diagnosed with a T-score of 2.8. I'm very health conscious and have always exercised (I was a dancer), used weights and ate a clean, organic whole foods diet so I was really shocked. I refused meds, thinking that if I just do more, do better, I could beat this. I told the doctor I would take 2 years, work harder than ever and build back my bones. Two years later I was at -3.2. I then realized that I would have to go on drugs to stop the decline. I went on Forteo as I felt it was the most "natural" of the drugs since it is parathyroid hormone. I had no side effects. First year I went to -2.8, second year I actually lost a little and went to -2.9. Moral of the story is, it's easier to save bone than try to gain bone. Had I gone on Forteo right away, I would have been out of the osteoporosis range. Hindsight is 20/20. That said, at your age you could look into HRT which might maintain your bones and with the right diet and weight training, potentially build some bone. I went on HRT after Forteo to maintain the gains and it appears that it has been effective for the last 7 years as my T-score remained steady with some slight gain shown this past year.

My opinion is that Dr Lucas is a charlatan. He's ridiculously expensive and hawks products. I'd steer clear of him as well as the Bone Coach, Kevin, who charges a fortune as well. I'd stick with Keith McCormick. He is legit, very knowledgeable and charges a reasonable fee for a consult. His book Great Bones is an encyclopedia of osteoporosis. He really knows his stuff and is not out to merely make a buck but to help people through.

Jump to this post

Thanks for your input.
My lowest score 1 year ago was -2.6 in The left femoral neck. Everything else is still osteopenia. I started on BHRT about 3 months ago and also I started strength training and have a personal trainer, plus I modified my diet so I'm hoping that all of this will at least keep my bones stable.

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Every situation is a bit different. My mom had pretty severe osteoporosis so my whole life I exercised regularly (on top of weight bearing and daily exercise regiment I also hike almost daily, ski, practice martial arts a few times a week, etc). I always took calcium and vitamin d. At 51 I had my first DEXA and my spine was -3.4 (with the lower lumbars -4), similar in hips. When I met with the osteo doc he noted genetics can be a bitch. Obviously not taking drugs was not an option for me. I went on two years of Tymlos (an anabolic bone building drug) and had almost 20% increase in spinal density (about 4% in hip). I had zero issues. Last month I had my first reclast infusion to “lock in the gains”. I was so nervous but knew I had to do something. I had a little bit flu like symptoms the day following the infusion (which they had told me would happen), and no other issues. My mom initially delayed taking osteoarthritis meds, she broke 16 bones and lost 4 inches of height. She has been on Prolia since 2018 and no breaks since with no side effects (she is aware of the issues with getting off Prolia but they decided it’s a good fit for her, she will likely stay on it for the remainder of her life, she is well into her 80s). You could maybe discuss hormone replacement therapy as a possibility for now (if post menopause) with your doctor, it can benefit more than your bone I understand. Good luck on your journey. I do recommend talking with a specialist, the order you take the drugs matters if you end up going that route.

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