What would you do? Medication.

Posted by babs10 @babs10, Feb 12 7:18pm

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@babs10

when I was in college, I had a sore spot on my shin. I went to the infirmary and the MD said I had a blood clot. I don't know what he based it on, there were no recommendations aside from going off birth control pills, no follow up, and I've always wondered if I truly had one. I haven't wanted to take hormones for that reason.

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He could have easily done a quick blood test or Doppler to see if you truly had blood clot. Better that you didn’t take birth control because if you read, they may not have been good for bones during formative years since they suppress natural cyclical levels of hormones from my understanding.

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@sallyj2

He could have easily done a quick blood test or Doppler to see if you truly had blood clot. Better that you didn’t take birth control because if you read, they may not have been good for bones during formative years since they suppress natural cyclical levels of hormones from my understanding.

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And, likely synthetic, oral hormones could have caused clotting problems unlike transdermal. Science evolves.

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@sallyj2

He could have easily done a quick blood test or Doppler to see if you truly had blood clot. Better that you didn’t take birth control because if you read, they may not have been good for bones during formative years since they suppress natural cyclical levels of hormones from my understanding.

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As I recall, he palpated the area and made a declaration.

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@bboon55

I had a mountain bike accident five years ago. I was going down a steep slope at a fast pace, and my front wheel slid sideways into a rut. I reflexively grabbed both brakes and got launched over the handlebars. I probably traveled 10 feet through the air, and dropped at least 8 feet onto hard-packed dirt and rock. The impact was violent, and it fractured my pelvis in two places. Search and Rescue had to come get me, I was out in the middle of nowhere. But, three weeks later, I walked away, whistling, all healed. It was like it had never even happened! No pain since. And the ER doc and the orthopedist said, "Man, you must have strong bones!" So, I tucked away the idea of a DEXA, having been bucked off horses, fallen out of trees, you name it. I never smoked, drank very little alcohol, didn't drink soda, no stomach problems, one cup of coffee a day, ate cheese, yogurt, tofu, drank milk, and ran thousands of miles training for marathons. Took karate, did yoga, played every sport and was just very active in general. I even went through a period in my 20s where I ate lots of sardines on crackers!
My mother is 92, and she played tennis until she was 80. She fractured her ankle getting out of her hot tub 2 years ago, and the surgeon said she had great bones.

Fast forward to Jan 15th, 2024. Went out to ski a few runs with my husband (we live at Lake Tahoe). On the first run, I got caught on my outside ski edge and was headed toward some fencing. In order to stop, I simply sat down. Immediately got back up and skied away. No pain, nothing. But in the next few runs, something wasn't quite right. My legs felt weak, and I was having trouble controlling my skis. I thought I was just having a bad day. I do squats and lunges to keep my legs strong, for skiing, so it was a little strange. Nothing more for a week, but then mid back started feeling tight, then went into massive spasms. The pain was so intense, worsening when I tried to lie down. I got no sleep at all. I had never had back trouble, so I was mystified.

Long story short, I went to work (I'm a physician at a university student health clinic) and got diagnosed with an L1 compression fracture. Subsequently had a DEXA which showed osteoporosis in both spine and hips, spine the worst w/ T score -2.8, and left hip -2.6. I can't begin to tell you what an insane surprise this was. I sat in my car after the DEXA trying to digest the results. My husband doesn't believe it, and my little brother was incredulous. They've seen me just thrash myself for years.
I alternate between feeling depressed (I went skiing and turned into a decrepit little old lady) and feeling searing rage at the universe (how dare this happen when I have tried to live a healthy life).

I started piecing things together. My only real risk factors are being a slender blonde, and stopping hormones when the Women's Health Initiative suggested it wasn't a good idea to continue them after menopausal symptoms stopped. Well, well, well, the Women's Health Initiative, who served up a big kettle of bullshit stew, and the medical world lapped it up. Never mind that the findings were totally debunked later, it was that sensational headline: "Estrogen in menopause causes breast cancer, heart disease and dementia!" was blasted across the front pages of newspapers around the world. Had we all lost our minds? Something that courses through your body from the onset of menses to menopause is suddenly a deadly poison? But it was taken to heart by the medical profession, and most people never bothered to check further.
For an interesting book about how much we need estrogen, check out "Estrogen Matters" by oncologist Avrum Bluming, MD and psychologist Carol Tavris. They go over in detail the link between estrogen and breast cancer (there isn't one) and how much women need estrogen to live long healthy lives and most importantly, keep their skeletons strong.
The difference between my 92 y/o mother and I? She had her uterus yanked out (didn't everybody's mom have that back then?) and was PUT ON ESTROGEN and took it for years. I had it for 2 years and then stopped because of the good ol' Women's Health initiative misinformation.
I attempted to restart it about a year ago because I was having a drop in my sex drive and experiencing "vaginal dryness." That's a euphemism for actually feeling like your vagina was sanded down with a Brillo pad and then finished off by a blow torch after having sex. When I mentioned restarting it to the young male gynecologist I saw for a Pap smear (my older doctor had retired), he was alarmed. "No, " he said, "I've seen too many cases of cancer!" and then, unbelievably, followed that with, "If you're having a drop in your libido, maybe you should see a sex therapist." I was too stunned to reply. I've been sleeping with the same guy for 40 years; I think we have it dialed in by now.
Part of me wonders about how older women are perceived, it's like, you old harpy, your child-bearing days are over, why would you even need to have sex? Meanwhile, there are pills, pumps, creams and injections all to help men achieve erections. But women? Just be quiet and cook dinner, then go fall off a cliff, why dontcha?

Anyway, sorry for the long rant. I just want to say that we should be open to anything in terms of helping our bones. I am now on a full dose of estrogen and progesterone, taking Evista because I couldn't wait to start something, and the osteoporosis specialist I saw is getting Tymlos for me, because unlike Forteo, it doesn't have to be refrigerated. Both those drugs are anabolic; they build bone. Then I will take something like a bisphosphonate to maintain my newly built bones. My kitchen counter is littered with many types of calcium supplements and Vitamin D3 with K2, but that's not new. I have been taking BoneUp, and vitamin D3 for years, not that it seems to have done much good. And I can't tell you how many docs I have seen over the past 20 years for this or that, including Paps and preventative visits and not ONE ever suggested that I needed a DEXA scan. A slender blonde, who was resting on her laurels because she had no family history and a rough and tumble past. So I can blame myself, too.

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Some similarities in our stories. I also backed off supplemental estrogen because of the stupid Women’s Health Initiative. I feel like I missed a valuable window of time. I’m advising my 40ish daughters to think about HRT when the time comes. Meanwhile, got a script for tymlos but denied by insurance and Medicare, so we will fight that battle.
Right now I am dialing in nutrition and doing a progressively heavy lifting workout with a trainer.
I’m sure insurance will want me to start with a bisphonate, but there is evidence that it makes the anabolic not work as well.
Asked my endo for a TBS, don’t think he knew what it was. Not a lot of medical choice on the Oregon coast.
Good luck to you on your journey.
Also, thanks for the link to the estrogen book. I will look it up.

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@babs10

As I recall, he palpated the area and made a declaration.

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Wow! And, big difference between superficial and DVT. Some medical advances have been helpful! 🤗

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I’ve always read that HRT is risky if not started within ten years post menopause. Have any of you started down this path much later than that, even twenty years? I think I would be just as fearful doing hormones as I would doing bone drugs, although it makes a bit more sense to add something back in that is lacking rather than add something entirely foreign. I haven’t really considered this option, since I never had any need for HRT when going through menopause twenty years ago. But I am exploring ALL options now, since last week’s DEXA showed further decline in lumbar from -3.2 Tscore to -3.7. Hips are stable and not osteoporotic from two years ago. I need to add that I have not had breast cancer myself, although I lost a sister to it many years ago.

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@sallyj2 my DEXA reports say not to take femur neck into account when measuring change. Not sure how to reconcile that with what was written above.

I have low blood pressure: last systolic was 94. I coped with Tymlos pretty well but started with a low dose and move up. Hydration helped.

I have read about relative risk but I can say with certainty that I had a 20% gain on Tymlos in my spine (and we excluded my fractures), and went from severe to borderline.

Everyone makes their choices and I agree the 1 in 8 women getting breast cancer is affected by age- older women are more likely to get it. I just hope that those taking HRT stay healthy that's all.

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@shexy

Thank you for sharing this experience and your insight.. I can relate. My trainer reminds me that I also have an 82% chance of NOT experiencing a vertebrae fracture rather than an 18% chance of having one in the next 10 years (I am 71 years old) without medicating.

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Your comment means a lot. I am 77 and also not medicating. I am trying a year of a more natural snd dedicated approach with walking a minimum of 30 minutes a day, osteoporosis exercises, use of weights, supplements, bone collagen, and bone building diet. The doctor recommended Evenity since my lower spine showed -3.3 but said he completely understood my decision. I will have another bine density scan in a year and see what happens. We have to each do what feels right for us.

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@sandrac

Not sure why you can’t take Prolia, but it helped me for years and I felt fine with no real side effects beyond occasional headache the day of the shot, but not always. Good luck with your new plan and I hope it helps you!

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What drug did you transition to after prolia?

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@glojo

I’ve always read that HRT is risky if not started within ten years post menopause. Have any of you started down this path much later than that, even twenty years? I think I would be just as fearful doing hormones as I would doing bone drugs, although it makes a bit more sense to add something back in that is lacking rather than add something entirely foreign. I haven’t really considered this option, since I never had any need for HRT when going through menopause twenty years ago. But I am exploring ALL options now, since last week’s DEXA showed further decline in lumbar from -3.2 Tscore to -3.7. Hips are stable and not osteoporotic from two years ago. I need to add that I have not had breast cancer myself, although I lost a sister to it many years ago.

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How old are you and how many years post menopause? I am exploring this too. I am almost 76. Early menopause at 39.

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