1. < Osteoporosis & Bone Health

Has anyone improved bone density without meds?

Posted by naomid @naomid, Mar 21, 2023

I have a very problematic dental history and will continue to need additional root canals and implants. I also have Sjogren's Syndrome and want to avoid any drugs that cause rheumatic symptoms. Other issues in my health history make all of the meds risky for me. That said, I work out almost daily, lift weights, maintain a healthy diet, take all the recommended supplements, and get most of my calcium nutritionally. My endocrinologist wants me to take an infusion/injectable drug. I dread the side-effects, yet I'm afraid of fracturing, which hasn't happened over the many years I have had osteoporosis. That said, my numbers are getting worse (-3.2 spine, -3.1 hip). I need to do something more than I've been doing, and am at a loss. I need hope and solutions I can be at peace with. Thanks for any comments or suggestions!

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windyshores | @windyshores | Mar 22, 2023
In reply to @naomid "Thank you so much, @teb, for all these specifics. I wish I could take HRT. To..." + (show)
@naomid

Thank you so much, @teb, for all these specifics. I wish I could take HRT. To me that would be the perfect solution, but had breast cancer almost 25 years ago, and from what I understand it is still contraindicated for me. I'm going to dive into the research a little more to see if anything's changed. Your work-out routine is really wonderful. I know I need to up the amount of weights i'm using. I guess it has to be a full-out effort, leaving no stone unturned.

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I also had breast cancer that was fed by estrogen. One in 8 women has breast cancer and of those cancers. 70% are fed by estrogen, I have read.

Reading about weight lifting makes me nervous! I found tai chi helpful but I don't even lift two seltzer bottles. Fractures make lifting tough.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Mar 23, 2023
In reply to @loplady "What weekly tablet did you take Monday morning that has no side effects for you?" + (show)
@loplady

What weekly tablet did you take Monday morning that has no side effects for you?

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Hi there,
I actually just started the Monday morning routine after two years of Tymlos which returned some of my scan numbers to Osteopenia and 1 year of Prolia which was quite problematic. The tablet I take now is alendronate.

Good luck to all of us as we strive to make the best decisions.
Chris

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2 replies
leeosteo | @leeosteo | Mar 23, 2023
In reply to @teb "I understand your fear of both taking meds that may cause side effects or facing the..." + (show)
@teb

I understand your fear of both taking meds that may cause side effects or facing the risk of possibly fracturing. Once receiving a diagnosis of osteoporosis, we all struggle with making these important decisions. Your story sounds somewhat similar to mine in that I did all the "right things"; exercised daily, lifted weights, stellar diet and I still lost bone. My density rapidly declined during menopause yet I was still determined to do it naturally and felt that if I just did more, I could gain it back. It was a big mistake as after diligently trying for 2 years to build back bone, my spine density decreased even further. I then knew I had to graciously accept that I needed medication and felt that the best option for me was Forteo as that could directly build back my spine. I too have some autoimmune issues and was afraid of the side effects of all of the medications but I handled Forteo just fine without any problems at all. I did gain back some of my spine but not enough to pull me out of osteoporosis. Had I gone on it immediately, my situation would be completely different. Once your bone is gone, it is very hard to gain it back. Even the meds can do just so much. Having gone through this experience, I would encourage you to try a medication and see how your body handles it. If you do have side effects, you can always try something else. Best to do it all, meds, diet and exercise, for the greatest possibility of building or at least, stabilizing your bones. Wishing you best of luck and health.

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Teb, could you share your t scores before and after Forteo? How long did you take Forteo? Are you working an endocrinologist?

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1 reply
cmdw2600 | @cmdw2600 | Mar 23, 2023
In reply to @naomid "Thank you so much, Chris. I so appreciate what you've shared. I hope you're free from..." + (show)
@naomid

Thank you so much, Chris. I so appreciate what you've shared. I hope you're free from suffering too. These decisions are so hard. I'm glad it worked out for you to take the oral meds. I can't take them at all due to serious GERD. I wish there was something available without all of the horrible side effects. And I wish there were more researchers working on better ways to treat this disease.

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I also have GERD and some other GI issues but am discontinuing Prolia after 5 injections (2 1/2 years) due to extreme hair loss. My endocrinologist is on board with Evista which is oral medication. I have not started it yet but will post if any side effects and when I have my next scan.

Best wishes to all, Cindy

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naomid | @naomid | Mar 23, 2023

Good luck! I hope it works for you.

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gigi4 | @gigi4 | Mar 23, 2023

I cannot understand why women are not followed for osteoporosis beginning at menopause to get a baseline and then retested annually. It used to be every five years. At my last annual check up I mentioned to my doctor I hadn’t had a dexascan in a while. She said we don’t test every 5 years any more. I was 70 at the time. Because I asked, she ordered one. My osteoporosis had progressed obviously and she wanted me to take one of the biophosphates. I didn’t want to do that due to side effects, one being possible fracture of the jaw. I’m currently taking a calcium supplement called Algaecal made from algae, a food source and absorbed better than the other calcium supplements. Additionally, I also exercise with ankle weights, climb stairs, walk and run and getting back to tennis. And incorporate as many high calcium foods as I can daily. I’m asking for another dexascan at my next annual.

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2 replies
teb | @teb | Mar 23, 2023
In reply to @leeosteo "Teb, could you share your t scores before and after Forteo? How long did you take..." + (show)
@leeosteo

Teb, could you share your t scores before and after Forteo? How long did you take Forteo? Are you working an endocrinologist?

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@leeosteo , sure thing...My T-score at my first dexa at age 57 was -2.8 in my spine (hips are not in osteo). During the two years following that dexa I increased my exercise, etc, trying to improve my density and I dropped to -3.2. I then went on Forteo. After my first year on Forteo, my dexa showed I was back at -2.8. You get the highest gains the first year. Unfortunately, the second year was kind of a waste as my T-score lowered to -2.9. I've been on HRT since then. I just had a dexa last month after a 3 year lull and according to the total number, my spine supposedly is holding steady while I had a very small increase in density in my hips. Weirdly, each of the lumbar vertebrae show a decrease individually yet the total T score is exactly the same at -2.9. I don't understand how that can possibly be. I have an upcoming appointment with an endocrinologist (new doc for me but have always been seen by endos) so I will be discussing this with him along with a million other things! I'm hoping that now that the black box warning has been removed from Forteo that there is the possibility of going on it again for 1 year. I doubt it but will be discussing it with him. The thing I loved about being on Forteo was the freedom from ruminating about this constantly! That alone was a huge relief. I wish my gains were greater but at least I gained something and didn't continue down the path of greater loss.

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2 replies
kirstenlheld | @kirstenlheld | Mar 23, 2023
In reply to @windyshores "@naomid I sympathize with your situation. I also have other health conditions, including lupus, afib and..." + (show)
@windyshores

@naomid I sympathize with your situation. I also have other health conditions, including lupus, afib and a previous breast cancer (meds for the cancer affected bones and I already had osteoporosis).

I tried for years to get on various meds. My doc did not want to give me Reclast due to the afib (he has since changed on this), I have bad GERD, doc does not use Prolia, and I tried Forteo and even went to an immunologist to try to get on it. I also applied for a trial of the Tymlos patch, thinking the sensitivity to Forteo shots might extend to Tymlos.

I had 3 traumatic fractures in my spine from a traumatic fall but in spring 2021 I made one unwise movement and fractured three lumbar vertebrae. (I also found out about one further thoracic fracture, for a total of 7). I was in acute pain and disabled for a few months, and can tell you that full recovery does not happen. I live positively, and walk every day, but I wish I had been able to do meds earlier.

Anyway, I tried Tymlos at full dose and ended up in the ER with afib, and had other side effects that were not tolerable. I stopped, talked to endos and cardiologists, and made the decision to try again at a low dose, and let my body get used to it over time. The Tymlos pen has 8 clicks: I started at 2 and moved up to 4,6, finally 7 and lately I have been doing the full 8. This really helped with side effects and my doc was happy with even 6.

I am almost done my 18 months. Where there is a will there is a way. I think the problem is that osteoporosis does not have symptoms. At the time of my lumbar fractures I was feeling great, even doing martial arts (carefully). It is hard to have this kind of determination before fracturing but I wish I had tried this method of ramping up Tymlos in 2020!

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I am going to insist that my primary doctor order another Dexa for me when I see him at the end of April for my yearly physical. My last one was back in August, and since I am newly into menopause and took a drop down from osteopenia to osteoporosis in the two years leading up to menopause, I want to make sure it is not getting worse. If nothing has changed, then I will still go ahead and send all my records to Dr. McCormick to get his opinion. My feeling is that if I went on anything, I would want to start with Tymlos very slowly and ramp up as you did, since I tend to react so strongly to medications. From what you had said though, insurance might not be willing to pay for it. I really question going on a bisphosphonate first, and that seems to be what they want to push you into. Any advice if I have to argue for a bone builder right away?

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1 reply
windyshores | @windyshores | Mar 23, 2023
In reply to @kirstenlheld "I am going to insist that my primary doctor order another Dexa for me when I..." + (show)
@kirstenlheld

I am going to insist that my primary doctor order another Dexa for me when I see him at the end of April for my yearly physical. My last one was back in August, and since I am newly into menopause and took a drop down from osteopenia to osteoporosis in the two years leading up to menopause, I want to make sure it is not getting worse. If nothing has changed, then I will still go ahead and send all my records to Dr. McCormick to get his opinion. My feeling is that if I went on anything, I would want to start with Tymlos very slowly and ramp up as you did, since I tend to react so strongly to medications. From what you had said though, insurance might not be willing to pay for it. I really question going on a bisphosphonate first, and that seems to be what they want to push you into. Any advice if I have to argue for a bone builder right away?

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Tymlos has a patient assistance program. I got mine for free (18 months). You call Together with Tymlos and they help you connect to Radius Assist.

OR, you could take Fosamax once and if it doesn't agree with you, insurance might cover Tymlos then. Some will after you try another med first.

I think this needs to change. Now that there is a generic Forteo, that may be easier to get as a first med (I don't know if this is true) but that pen dose is not adjustable to my knowledge. Someone can correct me if that is not true.

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