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 you say you "follow Dr. Doug Lucas," do you mean by reading and watching his videos or do you participate in one of his programs? Thanks.

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Reading and watching his videos. Tomorrow I see a physical therapist for the first time, and I also have Margaret Martin's book Exercise for Better Bones. I'm also going to sell my mountain bike and get a vibrational platform, like they use for the astronauts. :p

REPLY
@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.

Jump to this post

May I ask a few questions to clarify my understanding of your current treatment choices? On top of estrogen and progesterone, are you currently on Evista also? If so, why? Also whats your estrogen and progeterone dosages if you dont mind sharing? After your tymlos' approval, will you be taking hormones together with tymlos? Why and why not?

Personally I think for those of us who have osteoporosis due to estrogen deficiency, transdermal hrt is a great choice if no contraindications exist. The shifting sentiments towards hrt are palpable. I'm waiting for my clearance.

Accidents happen. If you are that active, it might be a good idea to wind down a bit as you age. With a same t score, the frax risk is higher for a 70yo compared to a 60yo. Severity of impact matters too. One of my childhood friends has good dexa readings (t score at ~ -1s) but had a freaking accident on ice. Her left tibia was broken into pieces. I had slipped at home landing on my back and head 3 years before my dx but was fine. I'm not sure I could say the same should I have the same accident today. Sometimes how we fall also matters, but that's out of our control. Fall prevention is still a top priority. Spine compression fracture may be another story.

Wish you the best!

REPLY
@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.

Jump to this post

I was curious about the combo of raloxifene and hormones
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7798121/
I had breast cancer that was fed by estrogen and progesterone. One out of 8 women get breast cancer and 80% of those cancers are fed by hormones. I understand that landmark study is no longer seen as valid, but I do wonder what risks people are taking with HRT after a certain age.

Also @bboon55. it sounds like you had a bad fall doing something strenuous, but your osteoporosis was mild at that point. Lumbar fractures are no fun but I hope your treatment approach makes you safe and pain-free.

REPLY
@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.

Jump to this post

It's so frustrating. You didn't mention your age - I'm wondering b/c of the estrogen and progesterone. Yes, seasoned women are easily and readily dismissed. It's infuriating. Glad you are ok.

REPLY
@mayblin

May I ask a few questions to clarify my understanding of your current treatment choices? On top of estrogen and progesterone, are you currently on Evista also? If so, why? Also whats your estrogen and progeterone dosages if you dont mind sharing? After your tymlos' approval, will you be taking hormones together with tymlos? Why and why not?

Personally I think for those of us who have osteoporosis due to estrogen deficiency, transdermal hrt is a great choice if no contraindications exist. The shifting sentiments towards hrt are palpable. I'm waiting for my clearance.

Accidents happen. If you are that active, it might be a good idea to wind down a bit as you age. With a same t score, the frax risk is higher for a 70yo compared to a 60yo. Severity of impact matters too. One of my childhood friends has good dexa readings (t score at ~ -1s) but had a freaking accident on ice. Her left tibia was broken into pieces. I had slipped at home landing on my back and head 3 years before my dx but was fine. I'm not sure I could say the same should I have the same accident today. Sometimes how we fall also matters, but that's out of our control. Fall prevention is still a top priority. Spine compression fracture may be another story.

Wish you the best!

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Great info. Thanks

REPLY

Most of the posts relate to fractures following a fall and I’m wondering if anyone else has experienced a spontaneous osteoporotic fracture. My 1st one- a left pilon fracture occurred after I walked around an art fair for hours (more walking than usual) on level surface and required surgery. The 2nd one occurred 2 days after the pilon fx surgery when I started to stand up from a chair and fractured my right patella in half (full disclosure that knee had a replacement a year prior). At the time of these fractures I had been on Prolia for 18 months. Was started on Tymlos 3 months later.

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@babs10

@glojo, I'm right there with you. When I started this thread one month ago, I referenced a few fracture-less falls I'd taken while preparing for a long hike that I completed in September (diagnosed in October). Those falls made me wonder about my actual bone health despite my low DXA hip score and, further, if I could somehow impair good bone by taking medicine if I really don't need it due to good bone quality. I participated in an excellent webinar yesterday with Debi Robinson (Bone Health Expert, Certified Yoga Therapist C-IAYT, Certified Health Coach FDN-P at Functional Diagnostic Nutrition®). She referenced my body size indicating that smaller framed people are likely to come up with low DXA scores. So I DO feel extremely lucky and the fall DID increase the faith I have in my bones. At the same time, I don't want to be stupid about this because once you fracture, troubles compound. My most recent idea is to fly to CA to see an integrative medicine specialist (Kim Millman, MD) so I can get both perspectives (natural remedies + meds if necessary). I've been all over the place in my thinking, as many of us have. I'm so glad I have taken time to educate myself, and to narrow down the list of people I follow and whose opinions I trust.

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@babs10- I agree with you on your choice of Millman!! . I am about to start meds but want to really understand my root causes so I can do all I can to assist my situation and once a hopeful 3years or so on meds , I can be , and stay in a good place with my bone health ongoing into the future. Would love to hear your feedback if you do fly to see her. Good luck!!

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@windyshores

I think twisting and contorting are more of a risk than falls, from my personal experience. And opening windows, bending over to lift things, etc. Excessive weight too.

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windyshores,
Agreed. My doctor calls it the “BLT” - bend, lift, twist.
I am forced to bend snd lift my 17 year old dachshund several times a day. The PT taught me how to do it safely. So far, so good.
My mother had a compression fracture which
hugely degraded the last ten years of her life. Trying to avoid that.

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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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@glojo

So sorry to hear about your fall, but isn’t it strange how that plays with our heads. I took a bad fall a year ago, slipping on a surprise patch of mud and goose poop on a lake trail. My feet flew out from underneath me like a comedy banana peel routine. I landed flat on my -3.7 T score back and banged my head. After assuming I would now crumble and my life would be forever changed, I got up and walked a half mile to my car…filthy but in one piece. Suffered incredibly painful glutes for a few weeks but that was it. So do we look at these near misses as better indicators of bone health than a standard deviation from a 30 year old, or do we just feel lucky, or both? I’m not smugly saying this is wise, but it did make me hesitate even more before starting medications that might make me feel icky enough to not workout, which is likely what strengthened my glutes enough that they fired up and protected my lumbar?! Throw the dice!

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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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