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!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

olderdiva12345 | @olderdiva12345 | Jul 20, 2023
In reply to @donna33 "Teb, Your story is very encouraging. After my first injection of Prolia, I had severe leg..." + (show)
@donna33

Teb, Your story is very encouraging.
After my first injection of Prolia, I had severe leg pain when walking outside for exercise. I had to stop every 5 minutes while walking. This did get better after about two months. I'm very prone to side effects anyway and don't feel I should continue the Prolia, even though I feel pressured to by my MD. Two pharmacists I know very well told me that the leg pain is a red flag.
Do you recommend Forteo?
I am 69 with autoimmune disease, Rheumatoid Arthritis, and wonder if it should have been prescribed Prolia anyway.
How did you learn your exercise routine? Did you go to a physical therapist first?

Jump to this post

Prolia was described by my doctor as well and I refused to take it due to the side effects one of which you just described. Other side effects consisted on bone and joint pain and I don't need or want that and am trying to get my bone density lowered with vitamin supplilments. Good Luck.

REPLY
donna33 | @donna33 | Jul 20, 2023
In reply to @windyshores "@donna33 Forteo and Tymlos are bone builders with an entirely different mechanism from anti-resorptives like Prolia...." + (show)
@windyshores

@donna33 Forteo and Tymlos are bone builders with an entirely different mechanism from anti-resorptives like Prolia. If you have not been on Prolia for long, a switch to a bone-builder might be effective. I have an autoimmune disease and my docs won't prescribe Prolia for me because it involves the immune system (Rankl) and because it is hard to get off of. It can also affect the effectiveness of bone builders if taken afterwards so check that with your doc.

I had excellent success with Tymlos. I managed to tolerate it by starting at a low dose (the pen has clicks) and ramping up.

If you cannot tolerate Prolia you now have a better chance of insurance covering Tymlos! Tymlos also has financial assistance.

Jump to this post

Thank you so much. I wasn’t ever told this about Prolia.
I have only had one injection,
but due to the side effects and after much praying I decided not to get any more.
I’ve had RA for 39 years. Do you think I should see the Rheumatologist about prescribing the necessary drugs Vs. My Endocrinologist?
I’m currently in the process of changing Rheumatologists because my current one
dismissed the leg pain as a side effect of Prolia.
The Tymlos you mentioned sounds like something I should look into. I have a sensitive system and very prone to side effects. I just noticed that it can cause inflammation as one of the more Common side effects.
I already have a lot of that from
RA, so I would have to proceed with caution.
Which type of specialist prescribes your osteoporosis meds?

REPLY
1 reply
donna33 | @donna33 | Jul 20, 2023

Naomid
I will pray for you to find
peace in this decision. I pray daily because I also do not want to take a drug that could cause harm.
Do you or does anyone know if any of these drugs cause an increase
in inflammation. I have RA and seem to be much more inflamed.

REPLY
windyshores | @windyshores | Jul 20, 2023
In reply to @dreamjean1958 "My question is how can you have dental implants if your bones are bad ? They..." + (show)
@dreamjean1958

My question is how can you have dental implants if your bones are bad ? They told me you need very strong bones for dental implants . My endocrinologist told me I will be taking Prolia after Evenity
. You also can only take Forteo orTymlos for only a yr. Tops 18 months . High risk of bone cancer .

Jump to this post

@dreamjean1958 that is incorrect info about Forteo and Tymlos. Even before the warning about cancer was lifted, the timing was 2 years. The time limit has been removed for Forteo. The cancer warning has been lifted for both Forteo and Tymlos. Not a single human has gotten bone sarcoma from either. There is a lot of outdated and incorrect info online.

REPLY
1 reply
windyshores | @windyshores | Jul 20, 2023
In reply to @donna33 "Thank you so much. I wasn’t ever told this about Prolia. I have only had one..." + (show)
@donna33

Thank you so much. I wasn’t ever told this about Prolia.
I have only had one injection,
but due to the side effects and after much praying I decided not to get any more.
I’ve had RA for 39 years. Do you think I should see the Rheumatologist about prescribing the necessary drugs Vs. My Endocrinologist?
I’m currently in the process of changing Rheumatologists because my current one
dismissed the leg pain as a side effect of Prolia.
The Tymlos you mentioned sounds like something I should look into. I have a sensitive system and very prone to side effects. I just noticed that it can cause inflammation as one of the more Common side effects.
I already have a lot of that from
RA, so I would have to proceed with caution.
Which type of specialist prescribes your osteoporosis meds?

Jump to this post

@donna33 I see an endocrinologist for bones and a bunch of other docs (rheumatology. nephrology, etc.).

I have a lupus diagnosis and recently very high positive antibodies for scleroderma. I am almost done 2 years of Tymlos.

What saved me with this medication is that the injection pen has 8 clicks to measure dosing. A full dose sent me to the hospital! I talked with docs and restarted at 2 out of 8 clicks and move up so as to give my body a chance to adjust. I got up to 6 clicks and my doc was happy. Then I got up to 7 for several months. I still cannot take the full dose. I go up and down between 6 and 7 clicks depending on what I am doing that day and how I am reacting.

Some days I have no side effects. In the beginning I had some headache, nausea, dizziness and heart palpitations. I switched to mornings. In any case over time the side effects eased as my body got used to it. I have low blood pressure so I make sure to hydrate and have something salty and I check my bp.

It sounds like you could ask about doing Tymlos but make sure of the best timing since Prolia can affect the effectiveness of Tymlos so maybe it should be out of your system first. You have not had a lot of Prolia so maybe you can follow with Tymlos. For those who have been on Prolia a long time I have been told Tymlos isn't as effective anymore. Ask your doc!

REPLY
1 reply
teb | @teb | Jul 20, 2023
In reply to @donna33 "Teb, Your story is very encouraging. After my first injection of Prolia, I had severe leg..." + (show)
@donna33

Teb, Your story is very encouraging.
After my first injection of Prolia, I had severe leg pain when walking outside for exercise. I had to stop every 5 minutes while walking. This did get better after about two months. I'm very prone to side effects anyway and don't feel I should continue the Prolia, even though I feel pressured to by my MD. Two pharmacists I know very well told me that the leg pain is a red flag.
Do you recommend Forteo?
I am 69 with autoimmune disease, Rheumatoid Arthritis, and wonder if it should have been prescribed Prolia anyway.
How did you learn your exercise routine? Did you go to a physical therapist first?

Jump to this post

I had no reactions to Forteo but of course, everyone is different. Tymlos works similarly and is something you could explore as well.

When first diagnosed with osteo, I asked my endocrinologist to put in an order for PT for me. I was lucky in that she knew of someone who was an expert in osteoporosis who then taught me what movements to avoid and how to modify others. Sherri Betz is an osteoporosis-trained practitioner as well as Margaret Melio. You can search their videos which will get you started on establishing an exercise practice.

https://www.drsherribetz.com/
https://melioguide.com/

REPLY
1 reply
olderdiva12345 | @olderdiva12345 | Jul 20, 2023
In reply to @windyshores "@olderdive12345 many of us were concerned about your calcium intake :) You want 1000-3000 units of..." + (show)
@windyshores

@olderdive12345 many of us were concerned about your calcium intake 🙂

You want 1000-3000 units of Vitamin D3 (I take 3,000 in the less sunny months- ask you doc or nutritionist) and you should also probably ask about taking Vitamin K.

I never mix calcium and magnesium- I separate them by at least two hours, as I was told by my doctor.

Jump to this post

I am told not to take Vitamin D3 - by my physician. Thank you, however, for your input. About two hours in the spread for me as well for calcium and Magnesium.

REPLY
1 reply
donna33 | @donna33 | Jul 20, 2023
In reply to @windyshores "@donna33 I see an endocrinologist for bones and a bunch of other docs (rheumatology. nephrology, etc.)...." + (show)
@windyshores

@donna33 I see an endocrinologist for bones and a bunch of other docs (rheumatology. nephrology, etc.).

I have a lupus diagnosis and recently very high positive antibodies for scleroderma. I am almost done 2 years of Tymlos.

What saved me with this medication is that the injection pen has 8 clicks to measure dosing. A full dose sent me to the hospital! I talked with docs and restarted at 2 out of 8 clicks and move up so as to give my body a chance to adjust. I got up to 6 clicks and my doc was happy. Then I got up to 7 for several months. I still cannot take the full dose. I go up and down between 6 and 7 clicks depending on what I am doing that day and how I am reacting.

Some days I have no side effects. In the beginning I had some headache, nausea, dizziness and heart palpitations. I switched to mornings. In any case over time the side effects eased as my body got used to it. I have low blood pressure so I make sure to hydrate and have something salty and I check my bp.

It sounds like you could ask about doing Tymlos but make sure of the best timing since Prolia can affect the effectiveness of Tymlos so maybe it should be out of your system first. You have not had a lot of Prolia so maybe you can follow with Tymlos. For those who have been on Prolia a long time I have been told Tymlos isn't as effective anymore. Ask your doc!

Jump to this post

Thanks so much for the information.
I am also looking into HRT, (I think it is Bio-identical HRT)
because I am so prone to side effects with drugs.
Praying for you.

REPLY
1 reply
olderdiva12345 | @olderdiva12345 | Jul 20, 2023
In reply to @teb "It would be a good idea to look closely at your supplements and see if there..." + (show)
@teb

It would be a good idea to look closely at your supplements and see if there are duplicates of particular vitamins and minerals so you can get a better idea of exactly what you are consuming. Your first post mentioned calcium carbonate and vitamin D so some of your supplements may be duplicating others (or not). 21 supplements a day is quite a lot. A low-dose multi is probably okay for most people but in general, it's a good idea to focus on whole, nutrient rich foods and then supplement where your diet may fall short. For example, I cannot eat dairy so it's a bit more challenging to meet my calcium needs. I calculate my calcium on cronometer.com (free) and if I do not meet the daily need of 900-1200 mg, I take a small amount to supplement which generally amounts to about 300 mg a day at most.
It might be a good idea to run this by your provider or meet with a Registered Dietician to see if you are meeting your nutritional needs and/or if your supplements might be too much of a "good thing".

Jump to this post

I have spent the morning doing just that and have found the duplication and am now down to 13 including Balance of Nature. Thanks for your concerns.

REPLY
olderdiva12345 | @olderdiva12345 | Jul 20, 2023
In reply to @donna33 "Thanks so much for the information. I am also looking into HRT, (I think it is..." + (show)
@donna33

Thanks so much for the information.
I am also looking into HRT, (I think it is Bio-identical HRT)
because I am so prone to side effects with drugs.
Praying for you.

Jump to this post

donna. So am I which is why I refuse to take Prolia and a few of the other injectable. Good Luck!.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.