1. < Osteoporosis & Bone Health

Treating Osteoporosis: What works for you?

Posted by heritage1955 @heritage1955, Apr 1, 2016

Hi. I'm new to the site and am interested in treating osteoperosis. I'm 39 yo and recently had a bone density that showed I'm at -2.4. So, going through the intial "I can't believe it" stuff. 🙂

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windyshores | @windyshores | Apr 5, 2022
In reply to @betterhealth "Thank you for your feedback regarding your personal experience with Tymlos. I also started slowly with..." + (show)
@betterhealth

Thank you for your feedback regarding your personal experience with Tymlos. I also started slowly with Tymlos a month ago. Side effects were manageable until I recently got to '7' clicks. I am taking injection at bed time to sleep off vertigo side effects. Drinking 2 qts water every day, eating every 2-3 hrs to keep blood sugar up. But next day after '7' clicks I was still experiencing intense exhaustion/brain fog all day, into the evening. Now, back to '6' clicks again & feeling much better. My Dr. suggests alternating '6' clicks with '7' clicks every other night to see if side effects get slowly better. Staying hopeful.

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I alternated 6 and 7 for awhile. I agree. It's weird that there is such a difference with one click. At this point I do 7 most days but I rest afterward (I take it in the morning.) If I have something important to do, I do 6. I still fine 8 impossible! I think alternating is a good plan. Consider the half life. That way you kind of get 6 1/2 every day!

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1 reply
betterhealth | @betterhealth | Apr 6, 2022
In reply to @windyshores "I alternated 6 and 7 for awhile. I agree. It's weird that there is such a..." + (show)
@windyshores

I alternated 6 and 7 for awhile. I agree. It's weird that there is such a difference with one click. At this point I do 7 most days but I rest afterward (I take it in the morning.) If I have something important to do, I do 6. I still fine 8 impossible! I think alternating is a good plan. Consider the half life. That way you kind of get 6 1/2 every day!

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Thank you windyshores! I appreciate your feedback!

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rashida | @rashida | Apr 6, 2022
In reply to @artscaping "My dear @rashida, I will admit to you that I am considering stopping Prolia after 1..." + (show)
@artscaping

My dear @rashida, I will admit to you that I am considering stopping Prolia after 1 year which will be up in May. I am having some of the same reactions I had with Boniva and other bisphosphonates even though Prolia is not a bisphosphonate. Both my PCP and I are keeping an eye out for new information. She is researching Evista and I am researching Evenity. I read just last week that Evenity can now be taken for two years. Remember that Evenity does both jobs.......creates new bone and then protects it from being destroyed. If that is true, and we are just guessing, then you could do two years of Evenity ........then another what you call relay drug......then back to Evenity .......etc. etc.

I will see if there is anything more in the literature. If you find something mentioned about that possibility with Evenity, please post me here on Connect. I get so discouraged with the limited options available to those of us who are extremely sensitive to so many of the osteoporosis medications.

Other than that......get ready to enjoy springtime. Let's stay in touch.
May you have peace and contentment.
Chris

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@artscaping - My rheumatologist told me there is no need to go on a relay drug after just one dose of Prolia. She sent me for a bone density test and my numbers had improved since my last test which was in 2018 or 2019 (and I don’t think the improvement was the result of that one Prolia dose, as I got this latest bone density test a year after that first - and last - dose). I guess I didn’t need to go on Prolia after all, but it was my physician who pushed me to take Prolia. She is all about prevention. 🤷🏼‍♀️

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callalloo | @callalloo | Apr 7, 2022
In reply to @jmbjar "Hi @flygirl8 Normally they run pth ( parathyroid hormone ) blood test if serum or ionized..." + (show)
@jmbjar

Hi @flygirl8

Normally they run pth ( parathyroid hormone ) blood test if serum or ionized calcium is high or low. Have you had your calcium checked. With parathyroid disease calcium can be normal with high pth as well
I would most certainly want to find out the cause of your osteoporosis first if that is possible.
Usually 2-3 blood tests with pth and calcium ( both done at same blood draw ) will give some indication if there is a problem with pt glands . They can be done weekly for 3 wks. Also good idea to have vit d tested as some have 2ndary hyperparathyroidism due to low vit D. Generally speaking, secondary hyperparathyroidism due to vitamin D deficiency does not cause abnormally high calcium levels but usually pth is higher than it should be. ( Calcium to parathyroid hormone ratio ) Hope you find this somewhat helpful. You are far too young to have osteoporosis

http://endocrinediseases.org/parathyroid/normocalcemic_hyperparathyroidism.shtml
http://endocrinediseases.org/parathyroid/secondary_hyperparathyroidism.shtml

http://www.niddk.nih.gov/health-information/health-topics/endocrine/primary-hyperparathyroidism/Pages/fact-sheet.aspxhttp://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/osteoporosis-disease/

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Great info. I'm keeping it in mind fir when/if have to consider osteoporosis treatment options.

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annevan | @annevan | Apr 7, 2022

Hi, I am new to this. I am a 78 year old female, exercice, walk, eat well, etc. The latest bone density test show another détérioration of Minus 3.8 I have heard of so many problems with bisphosphonates and Prolia that I have been reluctant to take any. Dont want to play with fire either. Am now going to see a specialiste and want to prepare. I welcome any positive comments.
Thank you Annevan

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billie3 | @billie3 | Apr 7, 2022

Has anyone read any research about the difference between bone strength and bone density? Has anyone read anything about new technology that measures BOTH ? A new technology/device called Echolight uses radiofrequency like an ultrasound instead of the radiation that's used during a DEXA scan for bone density. I've been reading about the Echolight scan which recently rec'd FDA approval. Hopefully Echolight scans will be readily available in all states.

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callalloo | @callalloo | Apr 7, 2022

This is exactly my concern! I have mild osteopenia, which I`m determined to do everything that I can to prevent progressing to osteoporosis, and maybe roll back to low osteopenia. So I've been reading about the various drugs for osteoporosis in case I have to decide on one someday.

But the big issue for me is that a DEXA scan gives very limited information. And the old bisphosphonates don't result in new healthy non-brittle bone being deposited. So what test(s) will yield real, valid measures of healthy, replicating bone? Since there's a lot more to the bone story than just thickness. Or, worse, just a picture of it.

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hillclan | @hillclan | Apr 8, 2022

I do not have a medical credential, but I believe there is hope for you to lower your risk of fractures by increasing the amount of calcium in your diet to the recommended amount and consistently doing weight bearing exercises. Your younger age may be an advantage in that better treatments and better information may come along for you in the near future.

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callalloo | @callalloo | Apr 8, 2022
In reply to @angelas "Yes, the internal medicine doctor mentioned increasing Vit D/exercise/increasing calcium but nothing else. She said the..." + (show)
@angelas

Yes, the internal medicine doctor mentioned increasing Vit D/exercise/increasing calcium but nothing else. She said the only way to build up the bone is through medicine (Forteo) and then to maintain it with a bisphosphonate thereafter. I kinda feel like the doc is treating me like I'm 90. I'm looking to have a second opinion with an Endocrinologist soon. I'm concerned about the length of time I would be on medication as I think typically women are diagnosed and start treatment at a later age. Would really like to hear what others are doing in a similar situation.

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It's good that you're getting a second opinion, especially with an endocrinologist or rheumatologist who also has significant experience with osteoporosis. The drug choice is important as there are several kinds, some more promising than others.

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billie3 | @billie3 | Apr 8, 2022
In reply to @callalloo "This is exactly my concern! I have mild osteopenia, which I`m determined to do everything that..." + (show)
@callalloo

This is exactly my concern! I have mild osteopenia, which I`m determined to do everything that I can to prevent progressing to osteoporosis, and maybe roll back to low osteopenia. So I've been reading about the various drugs for osteoporosis in case I have to decide on one someday.

But the big issue for me is that a DEXA scan gives very limited information. And the old bisphosphonates don't result in new healthy non-brittle bone being deposited. So what test(s) will yield real, valid measures of healthy, replicating bone? Since there's a lot more to the bone story than just thickness. Or, worse, just a picture of it.

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you can get a good description/explanation of the new Echolight technology/device that uses ultrasound rather than radiation (like the DEXA machines use) by typing (in a google search box)- will the new ultrasound device replace DEXA bone density testing Once there you can read an article from Apr 2021 by Dr. Susan E. Brown. might also find this article on her Website- betterbones.com

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