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.

@laurafuentes

@babs10 Here are some ideas about the cost of drugs, and insurance coverage:
Have you tried various kinds of appeals to your insurance company? Your doctor can fill out some special forms that say you're at high risk of fracture. In that case, many insurance companies will cover other, more expensive drugs that are not on their usual formulary. You can ask if your insurance company has a Case Manager you can speak to. And, you can possibly switch to a better drug plan for next year. (The Medicare website lets you test out what different companies will pay for specific drugs.)

Many drug manufacturers (like Radius Health for Tymlos, who promises to respond quickly) offer financial assistance if your income is below a certain level. Also, there are non-profit foundations like "The Assistance Fund" that might possibly help (though it may take several months to get on board with them.) Some (public?) hospitals (through their outpatient specialty pharmacy) have special reduced rates for certain expensive drugs. Even big chain pharmacies like CVS may offer financial assistance.

Another trick is that your doctor could possibly write it up in a way so that your Part B will cover it, instead of Part D. What's good about that is that your copays would count toward your annual out-of-pocket maximum, which could add up fast, in a few months, and then you'd pay nothing for the rest of the year. (They might not allow it, though. I'm not sure.)

How terrific that you hiked the Camino de Santiago! And a Europe bike trip, too. Good for you! They say that having strong muscles is great for protecting our bones.

I was like you, wanted to avoid medications and possible side effects, and I ended up with 2 vertebral compression fractures at age 71. My endocrinologist told me that after a certain point, nutrition and exercise alone are not helpful enough. The fracture experiences were hell, extremely painful and debilitating A year and a half later, the fracture experience still adversely affects my health and quality of life. I'd advise you to avoid that at all costs. So please do your research, leaving no stone unturned, and then make a decision. Good luck!

Jump to this post

Thank you for all of these ideas, several of which are new to me. I'll be sure to investigate them. I appreciate you taking the time to write all of that out.

I have an update on my status. I care for my grand baby on Thursdays. On Friday, she woke up vomiting and then happily carried on with her day. I got the same bug, vomited, FAINTED and ended up on my back on my bathroom (tile) floor, bleeding. My Apple Watch jolted me awake and called 911. I ended up in the ER and now I have staples in the back of my head. I had all kinds of work ups and x rays and CT scans and NO FRACTURES!!! It's testimony to how things can turn on a dime (my primary goal has been not to fall and here we are). I think it's also testimony that my bones are doing well so far (key words, I realize).

REPLY

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!

REPLY
@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!

Jump to this post

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.

REPLY
@debsinwa

Sue Ellen, I am doing pretty well on the Forteo. I started the end of October 2023. I have had a little tired but not horrible. They switched me to the generic in January and now my blood pressure has increased and I notice that the injections sting more then the brand name so I am going back to the brand name.
My Endocrinologist recommended it and I did some online research and decided that would be the best option. I follow Dr Doug Lucas online and watch his You Tube videos and he said they try hard to avoid drugs in their office but sometimes their patients require it and Forteo is the only drug they use. It has been around a long time and is one of the best for spine building. I also read Dr. Keith McCormick's Great Bones book. I held off for a few years because I wanted to try "natural" but that didn't work. I also had to hold off for nearly a year for some dental work too.
Talk it over with your dentist but I would think you might want to get those procedures done before you start. My dentist said they are getting better at finding ways to deal with people on these drugs but I wanted to wait but then I fractured again and it's so painful and takes months to heal. I hope you get good medical advice and can find a solution that works for you.

Jump to this post

I follow Dr. Doug Lucas, as well, and think he has just the right balance between trying to use methods other than medication and recommending medication, because some people need them. Full disclosure: I'm a physician myself, and am well aware of how many unhelpful physicians there are out there.

REPLY
@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.

Jump to this post

Sorry I forget how you fractured but did you fracture from bending and twisting and also had you had falls where you did not fracture? I think this is a topic I have not seen fleshed out anywhere. There are of course the usual statements about the danger of falls but not so much of considering the activities of daily life where you bend, twist or strain.
I'm curious how many people might share your experience that "twisting and contorting" are as risky as falls.

It's not the same as fracturing of course but I've had low back / hip issues since my late teens. I have finally in the past few years managed to stop straining my back with a key factor being learning to avoid movements that trigger pain and discomfort and finding alternative ways of moving my body that do not. Most of how to do that comes from Stuart McGill a noted low back expert. This may not directly translate to avoiding fractures but there might be some correspondence. Of course you can gently experiment with what causes one's low back pain and I don't know how you could do that for potential fractures. Still, I'm hoping the heightened awareness I've gained in avoiding pain triggers for low back pain might help me to some degree avoid movements that would result in a fracture. BTW some of the movements that I've learned to avoid are hip rotation exercises often recommended for low back pain.
I have not fractured. I quit playing pickleball once my DXA got in the mid -3's. I'm -4.1 now. My doc advised me to keep playing but play in a moderate manner. I told him I did not play sports in a moderate manner and was quitting. I exercise daily. Exercise I can do in a vigorous but controlled manner without sudden unexpected movements that you have in many sports. It's not as fun of course but I do enjoy it. I also play Beat Saber which is incredibly fun, great exercise and is safe for me.

REPLY
@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!

Jump to this post

@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.

REPLY

@babs10 Tymlos and Forteo build quality bone.

REPLY
@windyshores

@babs10 Tymlos and Forteo build quality bone.

Jump to this post

Yes, thanks. I'm not eligible for Tymlos (at least on my current plan). It appeals to me since you can adjust the dosage. I'll probably end up on Forteo - I'm just not there yet.

REPLY
@bboon55

I follow Dr. Doug Lucas, as well, and think he has just the right balance between trying to use methods other than medication and recommending medication, because some people need them. Full disclosure: I'm a physician myself, and am well aware of how many unhelpful physicians there are out there.

Jump to this post

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.

REPLY

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.

REPLY
Please sign in or register to post a reply.