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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kirstenlheld | @kirstenlheld | Mar 23, 2023
In reply to @windyshores "Tymlos has a patient assistance program. I got mine for free (18 months). You call Together..." + (show)
@windyshores

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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Thank you. I will look into that for sure. And that's a good alternative idea with Fosamax as well too if there's no other alternative. I tend to respond so badly to medications, which is why I really would like to start with a low dose first. I guess I'll just have to take one day at a time and explore all options. Your information combined with Dr. McCormick's book and this site have helped me tremendously. I am so glad I found this forum.

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leeosteo | @leeosteo | Mar 24, 2023
In reply to @teb "@leeosteo , sure thing...My T-score at my first dexa at age 57 was -2.8 in my..." + (show)
@teb

@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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teb, thanks for your info. Did your endo do any bone marker tests (CTX & P1NP) prior or during Forteo use? Or was your endo willing to look at secondary causes? Did your endo specialize in osteoporosis? This speciality is so difficult to find in my area. Most endo's appear to be diabetes centered.

My PCP suggested Prolia and I'm very concerned about that. He has referred me to an endo and the earliest appt is Aug. All the endo's in my area are scheduling out to Aug/Sept or 2024. I've had time to destress and do more research. I'm guessing Forteo my be my best option. My spine is currently -3.3, femoral neck -2.7. Hip and forearm are -2.2. and -2.4.

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1 reply
teb | @teb | Mar 24, 2023
In reply to @leeosteo "teb, thanks for your info. Did your endo do any bone marker tests (CTX & P1NP)..." + (show)
@leeosteo

teb, thanks for your info. Did your endo do any bone marker tests (CTX & P1NP) prior or during Forteo use? Or was your endo willing to look at secondary causes? Did your endo specialize in osteoporosis? This speciality is so difficult to find in my area. Most endo's appear to be diabetes centered.

My PCP suggested Prolia and I'm very concerned about that. He has referred me to an endo and the earliest appt is Aug. All the endo's in my area are scheduling out to Aug/Sept or 2024. I've had time to destress and do more research. I'm guessing Forteo my be my best option. My spine is currently -3.3, femoral neck -2.7. Hip and forearm are -2.2. and -2.4.

Jump to this post

I did have an endo who was an osteo specialist initially. I've moved a lot in the last few years so had to change docs a bit. I was least happy with my last endo and now I will have a new one with an appt coming up in April. I also have Hashimotos so an endo is essential for me. Originally, I believe I had all of the bone marker tests. They never came up with anything concrete except that it was not my parathyroid and it's likely genetic. Not that I buy that but I have no other leads. I've been off Forteo for years so I don't recall the exact tests they did while on it but I think they periodically did the 24 hour calcium test and alkaline phosphatase. In the last few years, my alkaline phosphatase has still been low which they are happy about as it indicates I'm not breaking down as much bone.
I think Forteo (or Tymlos) is really your best option. Build your spine back first before going on a maintenance drug. Don't be scared of it. Go for it! The psychological relief you will feel knowing you are doing all you can will be a huge weight off your shoulders (and spine!). Also, I think it's *possible* to stabilize the hips with increased walking, heel bumps, squats with weights but really, really hard to get at the spine. Wondering if you do core work?? That's good for the spine and good for balance and stability. I do 400 core reps and a 100 back lifts every morning before I get out of bed. (I know, I'm a lunatic). It has helped me tremendously in strength, posture, tone, etc.
I'm so sorry you have to wait so long. It's very stressful. Have you tried finding a rheumatologist? They also specialize in osteo so maybe that would give you additional options. If you can get in to see someone sooner, you can hopefully get them to prescribe the drug for you and if you're not happy with the doc, you'll have some time to seek out a new provider without the stress and fear of your osteo progressing.
Fingers crossed for you that you can get in a little sooner and get things rolling!

REPLY
1 reply
bettersleep68 | @bettersleep68 | Mar 24, 2023
In reply to @gigi4 "I cannot understand why women are not followed for osteoporosis beginning at menopause to get a..." + (show)
@gigi4

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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Could you share your dexa results

REPLY
barbjo | @barbjo | Mar 25, 2023
In reply to @teb "@leeosteo , sure thing...My T-score at my first dexa at age 57 was -2.8 in my..." + (show)
@teb

@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.

Jump to this post

Your comment about the relief from ruminating really hit home. I’ve started my second pen and I feel more like my old self. I switched to morning and my sleep has improved. I made a big change in my diet and exercise . More side effects could pop up, but a chance for bone growth hopefully without jaw issues seems worth it.

REPLY
2 replies
leeosteo | @leeosteo | Mar 25, 2023
In reply to @teb "I did have an endo who was an osteo specialist initially. I've moved a lot in..." + (show)
@teb

I did have an endo who was an osteo specialist initially. I've moved a lot in the last few years so had to change docs a bit. I was least happy with my last endo and now I will have a new one with an appt coming up in April. I also have Hashimotos so an endo is essential for me. Originally, I believe I had all of the bone marker tests. They never came up with anything concrete except that it was not my parathyroid and it's likely genetic. Not that I buy that but I have no other leads. I've been off Forteo for years so I don't recall the exact tests they did while on it but I think they periodically did the 24 hour calcium test and alkaline phosphatase. In the last few years, my alkaline phosphatase has still been low which they are happy about as it indicates I'm not breaking down as much bone.
I think Forteo (or Tymlos) is really your best option. Build your spine back first before going on a maintenance drug. Don't be scared of it. Go for it! The psychological relief you will feel knowing you are doing all you can will be a huge weight off your shoulders (and spine!). Also, I think it's *possible* to stabilize the hips with increased walking, heel bumps, squats with weights but really, really hard to get at the spine. Wondering if you do core work?? That's good for the spine and good for balance and stability. I do 400 core reps and a 100 back lifts every morning before I get out of bed. (I know, I'm a lunatic). It has helped me tremendously in strength, posture, tone, etc.
I'm so sorry you have to wait so long. It's very stressful. Have you tried finding a rheumatologist? They also specialize in osteo so maybe that would give you additional options. If you can get in to see someone sooner, you can hopefully get them to prescribe the drug for you and if you're not happy with the doc, you'll have some time to seek out a new provider without the stress and fear of your osteo progressing.
Fingers crossed for you that you can get in a little sooner and get things rolling!

Jump to this post

teb, thanks for responding with such positive energy! I think I too will have a sense of relief when I can meet with someone and get moving on addressing this. I saw a rheumatologist years ago (I've been dealing with this since 2015) and didn't get anything out of that discussion. So I thought I'd go with an endo this time. I'm seriously thinking of consulting with Dr McCormick. Although my husband is not a fan of chiropractors. Dr McCormick is definitely more than an chiropractor in this instance.
I go to the gym 3x/wk and use treadmill and weight machines, plus I try to walk 2-3 miles/day 7 days/wk weather permitting. I've started Tai Chi. I wouldn't consider it a real bone builder, however, the class and people are really fun. What type of core reps and back lifts are you doing? I've been looking for something more I can do on the other 4 days besides walking.

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1 reply
melia7 | @melia7 | Mar 25, 2023

Hello Naomid, I am also in your team. I mean that I have the same difficult combination of dental problems, and probably even more in the future. I was afraid to make implants because I tended to have dental abscesses. And now I have read that the medicine I was prescribed, alendronic acid can cause the necrosis of the jaw bone. This information makes it problematic to try it. I visited the physiotherapist here in Spain and he said that he had several patients that were doing not bad following 2 rules: movement (walking and exercises) and force (machines with weight). As you see many specialists are sure that their help can help us to avoid fractures. If you want, I can send you his exercises. It is important to share our experiences.

REPLY
1 reply
naomid | @naomid | Mar 25, 2023
In reply to @barbjo "Your comment about the relief from ruminating really hit home. I’ve started my second pen and..." + (show)
@barbjo

Your comment about the relief from ruminating really hit home. I’ve started my second pen and I feel more like my old self. I switched to morning and my sleep has improved. I made a big change in my diet and exercise . More side effects could pop up, but a chance for bone growth hopefully without jaw issues seems worth it.

Jump to this post

Good luck, barbjo! Are you using Forteo?

REPLY
1 reply
naomid | @naomid | Mar 25, 2023
In reply to @melia7 "Hello Naomid, I am also in your team. I mean that I have the same difficult..." + (show)
@melia7

Hello Naomid, I am also in your team. I mean that I have the same difficult combination of dental problems, and probably even more in the future. I was afraid to make implants because I tended to have dental abscesses. And now I have read that the medicine I was prescribed, alendronic acid can cause the necrosis of the jaw bone. This information makes it problematic to try it. I visited the physiotherapist here in Spain and he said that he had several patients that were doing not bad following 2 rules: movement (walking and exercises) and force (machines with weight). As you see many specialists are sure that their help can help us to avoid fractures. If you want, I can send you his exercises. It is important to share our experiences.

Jump to this post

Hi, Melia7. Are you planning to try a different drug or just stick with exercise? I think I'm at the point where I need to combine both. It's been a very difficult decision, one of the hardest I have ever had to make. It's wonderful to have this forum where we can hear others' stories and feel their support. Good luck to you!

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1 reply
barbjo | @barbjo | Mar 25, 2023
In reply to @naomid "Good luck, barbjo! Are you using Forteo?" + (show)
@naomid

Good luck, barbjo! Are you using Forteo?

Jump to this post

Yes, I’m on Forteo . It was a process. The co-pay is high, but I went weeks worrying it wouldn’t be covered at all or at a very high co- pay. Then it was concerns about side effects. So now , I’m letting it do its thing .

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