Struggling with making an osteoporosis treatment decision

@mrossi, you sound like I did just shy of a month ago. I was literally waking up crying in the middle of the night, so overwhelmed by this completely shocking diagnosis and daunting options. Like you and all most of us here, I was very active, salmon 3x+ per week, good sleep, lots of water, etc. As the result of a persistent and very severe covid cough this summer, I finally went to the back doc early Sept for a nagging back pain from the cough. MRI and Xray revealed two fractured verterbrae. I was put in a back brace for 3 months and sent on my way. After that shock wore off, I INSISTED on a Dexa (bone density) scan despite being told "not until your 65"...I'm 61. That scan revealed osteoporosis at a -3.0 level and it completely sent me into a whirlwind. My doctor sent me to an osteo PA who immediately walked me through what life will be like. She prescribed Fosamax and told me to fill it but don't take it bc it wreaks havoc on stomach (I have reflux and IBS) and esphogeal issues. You have to fail on the bisphosphonates before any insurance will allow for Forteo or Tymlos which is a daily self-injection that you stay on for two years. After that, a second opinion osteo PA advises Evenity injection in her office 2x per year...I haven't gotten past that.
My advice to you is to breathe: we have this and while I may or may not have a family history, the fact is this is where we are. We could have such worse diagnoses (this is what got me through the initial shock; its not cancer or MS, thank God!) and these drugs appear to have sound evidence on their efficacy and results. Probably like you, I am not a meds fan. I rarely even take an aspirin if I can avoid it. I did tons and tons of research, went through swings of emotion (I'm divorced many years and going through this alone has been tough; my daughter wants to know all about it so she can prepare and she's only 30!). Bottom line is women's healthcare is lacking and this situation woke me up to that. It's also humbling and sobering as I feel 47 but I'm not and now feel I do have to slow my roll but just a bit.
My advice would be to seek a doc you are comfortable with, listen to podcasts, go to forums like this and I used Inspire dot com (this site won't let me post a link) which made me really feel like we are all in this together.
I began Tymlos 5 days ago after hemming and hawing. I'd recommend it because you can control the dose which I only found out on this forum last night. You click the pen and inject (its honestly not bad you don't feel the needle bc its the width and length of an eyelash). You click until you hit 80 which is the full dose. I had 5 nights of no sleep, foggy headedness and fatigue and no appetite. Last night, I took it a bit earlier and stopped short of the full dose. The side effects were there but much lighter, my sleep significantly better and I woke up early this morning (like I used to) and did yoga and feel like my old self.
Exercise and diet are also key. Be sure to immediately get on Vit K2 (the M4 and M7 are important, M4 helps the transport of new bone cell), collagen (I use Solgar Hylauranic Collagen tablets--did it for my vanity for my skin and giddy to know its so key for our bones), calcium, Vit D3. Walking, I am told, is the best exercise, followed by a mini trampoline where you can just bounce for 10 mins and it = a 30 min run and has been proven by NASA to boost bone building. Apparently, astronauts lose bone density bc of the lack of gravity. Of course, weights are also key, though we are no longer permitted to lift more than 20-25lbs and that's fine with me.
I do hope this helps you and I'll keep checking the posts. The other forum link I gave you allows you to 'friend' a person and I met a lovely woman out in Washington who is 53 and in the same boat as us. Hang in there, friend, and have a Happy Thanksgiving. We've got this! xx

Hi Tricia,
Thanks for your post. I think I probably wasn't clear enough that I'm very comfortable with my decision not to pursue meds for this. The main reason for that is that I have two books that I've used over the years to guide me in my treatment. One, titled "Exercises for Osteoporosis" by Dianne Daniels, M.A. is a great addition to my workout program (in addition to online classes, feeding and mucking horses, walking 2-3 times an hour/week) and "Mayo Clinic on Osteoporosis," edited by Stephen Hodgson, M.D., in 2003, which states in Chapter 6, p. 81 ". . . keep in mind that having osteoporosis doesn't mean you'll definitely beak a bone. . . And there's no T-score below which you will definitely break a bone." On pp. 82-83: "A bone density test doesn't measure bone quality. Bone quality is how connected and intact the structure of your bones is, not just the amount of material. Bone quality is another factor in how strong your bones are and how resistant they are to breaking. That means your bones may have low density but at the same time be of a high quality that resists breaking." "Some people may have low T-scores but never fracture."
These are things that were never mentioned to me by any doctor treating me for osteoporosis. I have had 6 bad falls in the past 20 years (none associated with balance issues) and no fractures. This is not conclusive of anything, but it is reassuring to me, and what continues to be reassuring is that I am not putting chemicals into my body that are creating other problems, the significance of which - now or in the future - I have no way of knowing.
None of what I am saying is for the purpose of suggesting that my approach is appropriate for anyone else. But I did want to add my two cents for those of us who have decided, for various reasons, to forego drug treatment for osteoporosis.
Take care and good luck with your chosen protocol!

@mrossi a few things; Frist, -2.4 is not osteoporosis and you were probably medicated prematurely.

Second, Tymlos and Forteo do not cause fractures. And because they don't affect resorption the way that bisphosphonates and Prolia do, the bone is of high quality. In fact, these meds improve bone quality.

Tymlos has a pen with 8 clicks. I started with full dose then half dose and ended up in the ER. I met with cardiologists and endocrinologists and decided to try again. I started with two clicks and moved up every few weeks, and have been on 7 clicks for a year now. My doc was happy with 6. I have zero side effects but I did have them at first, each time I moved up in dose. They faded quickly. Then I increased by one click. I still cannot tolerate 8.

Many insurances will cover these drugs if there is a fracture. I am not sure if a severe DEXA also means coverage. But you can try Fosamax, or say you already did, and cannot tolerate it, and you may get coverage. I did.

Evenity builds bone, like Forteo and Tymlos, but also affects resorption, though to a lesser degree than biphosponates and Prolia. It is a strong bone builder. I am leaving Evenity for after Tymlos if needed. You can follow Tymlos with Evenity but not the other way around.

I tried to get on meds for years. I even went to an immunologist. The adjustable dose made all the difference for me. I have SEVEN fractures, three from a traumatic fall but 4 from a simple unwise movement. Believe me you don't want the pain and disability from fractures.

I am on this forum for one reason: to help others avoid what I have experienced. Tymlos has made me so much stronger. My daughter is visiting and cannot get over it.

Keith McCormick wrote "The Whole Body Approach to Osteoporosis." But guess what? He did meds himself and advised me to do so too. Then later you can use more natural approaches.

This is an update re: My crown broke off and I was sent to an oral surgeon for consultation. I am not a medical person. My regular doctor felt that Evenity was a different drug than most of the other meds for Osteo. There is a warning regarding having dental surgery while on Evenity. There are risks with this drug along with many others. Each patient must decide what they think is best for them and discuss with their doctor. After visiting the oral surgeon, I got the same impression from him. In the end, it is your decision whether to have a necessary surgery done and know what the risks are. There are many different problems with people who have Osteo. For me, my crown broke off, the old root canal needs to come out. Due to my Burst Compression Lumbar I Fracture in 2021, I can't stand any longer than 5 minutes. I have to sit down.

@chanson2
Ahhh....there you are. I want to make sure I read your question correctly. At first, I had no endocrinologist and my PCP started me on Bonvia, a bisphosphonate with monthly injections. I knew nothing about side effects and so did not realize that I was struggling with the monthly injections and their half-life.

After three months of increasing pain in my joints and jaws, I cried out for help and was introduced to Forteo and Tymlos. I chose Tymlos because of the cost and the refrig issues.

Anything else? Happy Thanksgiving.

Chris

I feel the same way..hopefully we will continue our journey with no compromise..

@bettersleep68 I think a bisphosphonate is not the best medication for a bone density score of -4/.0. Insurance needs to change to cover bone builders first, but it is easy enough to try Fosamax and "fail" and get coverage for Tymlos or Forteo.

@dianestanley Evenity builds bone like Tymlos and Forteo but also is an anti-resorptive like bisphosphonates and Prolia, but to a lesser degree. Yes it comes with a warning but the risk with dental work is, I believe and have been told, is less than with those other anti-resorptive drugs.

As a side note, my dentist thought Tymlos was a problem for dental work. In other words, he thought any osteoporosis drug was an issue. Not so. That is when I realized my dentist is not well-versed in these medications.

My endocrinologist said most dental issues happen with the higher doses taken by cancer patients. I don't know if this is true but that is what I was told. Others on here may disagree anecdotally!

Thanks, @mrossi. Trust me, I was looking to every book and "reverse osteoporosis without meds" resource I could follow. Sad fact is, I broke two vertebrae in my back from coughing! Was a severe and persistent cough from covid and I tried to get back into my workout but that nagging back pain...who knew it was broken! Anyway, I have to imagine--as you correctly pointed out--that my bone quality is lacking, despite the diet, exercise, and HRT in my regiment for the past 10 years. My mother had osteo (discovered in her 60's after two wrist fractures), and I chalked it up to living a more sedentary lifestyle.
No treatment is wrong, as long as we are exercising, eating right and supplementing with good, key supplements. I was just so spooked by the bone fractures in my back and my daughter is getting married next year so I didn't want to take the chance of not trying everything I can to accelerate and boost the rebuilding of bone cells in my body. I've got a slew of new doctors appointments in my calendar for January, including a very impressive rheumatologist, to ensure that this is the right treatment for me. I've always advocated for my healthcare and sought out top docs, which was easier in NYC.
Wishing you and everyone on this journey the best...and no (more) fractures!
Be well.

Hello @mrossi

Thank you so much for your "two cents," very helpful! I have very low t-scores and have had some bad falls, also not balance issues, and thankfully have not fractured anything. I'm hoping this means I have good "bone quality" despite apparently lacking density, if we are to trust DEXA testing. I've learned not all medical people involved in bone health do. Thanks for the book suggestions too.
I am seeing an endocrinologist in early January. I know meds will be strongly offered...again. Still finding this a difficult decision. Be well and thanks!