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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lioness | @lioness | Jun 11, 2020

@julie2020 I agree with you it is frustrating there isn't any more options. My Dr and I decided to go the naturel.route so will see at my next Dexa scan .

REPLY
GailBL, Alumni Mentor | @gailb | Jun 11, 2020

My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My doctor (GP) wants me to go on Prolia, but I'm just not wanting to do that. I react very strongly to all medications. I don't want to add any new ones, so I've decided to go med-free for my osteoporosis. I'll see what my next scan says.

I just think that my grandmother and mother never took medication for their bone loss, so why would I? My grandmother fell and broke her hip when she was 75. She'd had a "humpback" as long as I can remember. She was also lactose intolerant & hated fish, so probably didn't get much calcium. She was born in 1887 and died at 93 after having her 3rd hip replacement. I assume she had bad osteoporosis. My mother and her sisters never had the broken bone issue. My mother died at 78 from pancreatic cancer. So, I'll wait it out.

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 11, 2020

@gailb, Thank you Gail for telling us about your osteoporosis treatment decision and the background that supports it for you. I cherish my mother's life and her attempts to avoid pain and discomfort. I truly don't think she had a forward-thinking clinician to educate her about osteoporosis. I will always remember the sound of her hip breaking as she turned to give me a hug when I arrived to visit. That is a pretty strong memory. "When we know better, we do better," said Maya Angelou. The goal is to know better and then figure out how to protect our bodies and just do better.

May you be free of suffering and the causes of suffering.
Chris

REPLY
lioness | @lioness | Jun 11, 2020
In reply to @gailb "My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My..." + (show)
@gailb

My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My doctor (GP) wants me to go on Prolia, but I'm just not wanting to do that. I react very strongly to all medications. I don't want to add any new ones, so I've decided to go med-free for my osteoporosis. I'll see what my next scan says.

I just think that my grandmother and mother never took medication for their bone loss, so why would I? My grandmother fell and broke her hip when she was 75. She'd had a "humpback" as long as I can remember. She was also lactose intolerant & hated fish, so probably didn't get much calcium. She was born in 1887 and died at 93 after having her 3rd hip replacement. I assume she had bad osteoporosis. My mother and her sisters never had the broken bone issue. My mother died at 78 from pancreatic cancer. So, I'll wait it out.

Jump to this post

@gailb HI Gail I also have thinning bones My Dr and I talked about it and decided I should increase my calcium, to 1200 mg a day decided morning and night plus D3 5000 mg I also take Boron, Vit K Dr also told me weight bearing exercises so this is my regimen I have a year before next dexa scan hope this helps

REPLY
migizii | @migizii | Jun 11, 2020
In reply to @artscaping "@curlylocks, @julie2020, @sue225, and others facing similar issues. Good evening ladies. I see that two of..." + (show)
@artscaping

@curlylocks, @julie2020, @sue225, and others facing similar issues. Good evening ladies. I see that two of you may be facing a medication decision for osteoporosis. We, (post-menopausal females and males with special needs) in an attempt to have stronger bones for longer and happier lives, have a lot of things to consider. What is our starting point, how old are we, what fractures have we already had, how active are we, do we have access to an endocrinologist or an institutional/research facility with an interest in this phase of all women's lives?

There are lots of questions. I have an opportunity this week to find out some answers to questions that pop up frequently. Tymlos or Forteo is just one of those questions. My repetitive question is, and then what? I am just completing my first year of Tymlos. No side effects, no worries about getting it anymore after it was back-ordered during the early COVID days. When will I see improvement....how much? Since I have severe allergies to bisphosphonates......there aren't many options. Evenity.....is a new medication. How does it work and for whom will it be beneficial?

Do you or anyone else who is sharing these posts have general or even specific questions right now? For those of you who are getting DEXA scans this spring what are you seeing? Improvements? Better than expected? Lacking in something?

For those who have chosen exercise and modified natural diets, how is that working at this point? What kinds of encouragement do you see or want to see?

I just thought that since I was facing these issues this week, I would find out a bit about what other women are thinking, questioning and worrying about. I am not easily convinced, one way or the other. I am looking, like you, for evidence of improvement. Help me out here......let me know what you would ask.

May you all have happiness and the causes of happiness.
Chris

Jump to this post

I am presently on Prolia and due for my yearly appointment with my endocrinologist on July 1st. I will have a DEXA test then to see how I’m doing as I was on Tymlos last year (off and on due to side effects). I had broken my foot in 2019. Prolia doesn’t cause me any problems and I had taken it many years ago and had opted for a year off medication. Not a good choice (against doctors advice). I lost all the gains I made plus some....it is a challenging situation. Good luck!

REPLY
2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 11, 2020
In reply to @migizii "I am presently on Prolia and due for my yearly appointment with my endocrinologist on July..." + (show)
@migizii

I am presently on Prolia and due for my yearly appointment with my endocrinologist on July 1st. I will have a DEXA test then to see how I’m doing as I was on Tymlos last year (off and on due to side effects). I had broken my foot in 2019. Prolia doesn’t cause me any problems and I had taken it many years ago and had opted for a year off medication. Not a good choice (against doctors advice). I lost all the gains I made plus some....it is a challenging situation. Good luck!

Jump to this post

@migizil, Oh no.......so it was in your year off medication that you the injury. Now you are starting over with Prolia. Please don't criticize yourself too much. Each of us has some.....do overs that just serve to remind us to continue to make the very best decisions that we can. Thank you so much for your contribution. Stay in touch here.

May you be free of suffering and the causes of suffering.
Chris

REPLY
1 reply
sue225 | @sue225 | Jun 11, 2020
In reply to @gailb "My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My..." + (show)
@gailb

My Dexa Scan showed that my hip is -3.3. I don't remember any other numbers. My doctor (GP) wants me to go on Prolia, but I'm just not wanting to do that. I react very strongly to all medications. I don't want to add any new ones, so I've decided to go med-free for my osteoporosis. I'll see what my next scan says.

I just think that my grandmother and mother never took medication for their bone loss, so why would I? My grandmother fell and broke her hip when she was 75. She'd had a "humpback" as long as I can remember. She was also lactose intolerant & hated fish, so probably didn't get much calcium. She was born in 1887 and died at 93 after having her 3rd hip replacement. I assume she had bad osteoporosis. My mother and her sisters never had the broken bone issue. My mother died at 78 from pancreatic cancer. So, I'll wait it out.

Jump to this post

@gailb I don't want a hip fracture and I don't want that hump. It's so unattractive and when the spine gets curved like that it pushes up on the lungs and it just sounds like not a good thing. Your grandmother was lucky. Not everyone recovers nicely from a hip fracture. (Wheelchairs maybe forever). And hip replacement surgeries have risks as well. My aunt had a hip replacement. The surgery as they say was a success. The patient, sadly died in recovery from the anesthetic . I have an older husband and no children so no one really to push me around in that wheelchair. I also have a long history of reacting badly to medications. For me taking these potent pharmaceuticals causes lots of anxiety and worry, lots, but that fear of fracturing also terrifies me (maybe more).
These decisions are difficult for so many of us to make. I hope that in the next five years, researchers will come up with better options for this bone disease. Wish you well.

REPLY
sue225 | @sue225 | Jun 11, 2020
In reply to @migizii "I am presently on Prolia and due for my yearly appointment with my endocrinologist on July..." + (show)
@migizii

I am presently on Prolia and due for my yearly appointment with my endocrinologist on July 1st. I will have a DEXA test then to see how I’m doing as I was on Tymlos last year (off and on due to side effects). I had broken my foot in 2019. Prolia doesn’t cause me any problems and I had taken it many years ago and had opted for a year off medication. Not a good choice (against doctors advice). I lost all the gains I made plus some....it is a challenging situation. Good luck!

Jump to this post

@migizii It is good to hear a positive Prolia story. That is the unfortunate aspect of Prolia that the bone loss is so rapid after discontinuation. What's interesting and great is that you lost bone but didn't get those rebound fractures which apparently can happen quite soon after stopping. Thanks for sharing.

REPLY
migizii | @migizii | Jun 11, 2020
In reply to @artscaping "@migizil, Oh no.......so it was in your year off medication that you the injury. Now you..." + (show)
@artscaping

@migizil, Oh no.......so it was in your year off medication that you the injury. Now you are starting over with Prolia. Please don't criticize yourself too much. Each of us has some.....do overs that just serve to remind us to continue to make the very best decisions that we can. Thank you so much for your contribution. Stay in touch here.

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Thank you for your kind words! We are all on unique, interesting life journeys. Be well❤️

REPLY
arlene7 | @arlene7 | Jun 12, 2020
In reply to @artscaping "@curlylocks, @julie2020, @sue225, and others facing similar issues. Good evening ladies. I see that two of..." + (show)
@artscaping

@curlylocks, @julie2020, @sue225, and others facing similar issues. Good evening ladies. I see that two of you may be facing a medication decision for osteoporosis. We, (post-menopausal females and males with special needs) in an attempt to have stronger bones for longer and happier lives, have a lot of things to consider. What is our starting point, how old are we, what fractures have we already had, how active are we, do we have access to an endocrinologist or an institutional/research facility with an interest in this phase of all women's lives?

There are lots of questions. I have an opportunity this week to find out some answers to questions that pop up frequently. Tymlos or Forteo is just one of those questions. My repetitive question is, and then what? I am just completing my first year of Tymlos. No side effects, no worries about getting it anymore after it was back-ordered during the early COVID days. When will I see improvement....how much? Since I have severe allergies to bisphosphonates......there aren't many options. Evenity.....is a new medication. How does it work and for whom will it be beneficial?

Do you or anyone else who is sharing these posts have general or even specific questions right now? For those of you who are getting DEXA scans this spring what are you seeing? Improvements? Better than expected? Lacking in something?

For those who have chosen exercise and modified natural diets, how is that working at this point? What kinds of encouragement do you see or want to see?

I just thought that since I was facing these issues this week, I would find out a bit about what other women are thinking, questioning and worrying about. I am not easily convinced, one way or the other. I am looking, like you, for evidence of improvement. Help me out here......let me know what you would ask.

May you all have happiness and the causes of happiness.
Chris

Jump to this post

Hi Chris,
After months of denials from insurance company, I was finally approved for Evenity and will hopefully start injections next week. Of course, as with all medications, there are side effects however I’ve made the choice to take in hopes that it will help build bone, especially in my spine, where I need it the most.

I will also be taking a diuretic, Hydrochlorothiazide, (since I also was diagnosed with idiopathic hypocalcemia), along with D3 once a day. The diuretic contains sulfa, and since I had an allergic reaction 40 years ago to a sulfa drug I will need to go to visit an allergist to verify if I still have the allergy....ugh!

It saddens me that there are so many struggles in trying to get better, however I will not give up! I want to be strong to be able to play with my grandchildren for years to come without the fear of damaging my spine!

In your email it mentions that you will find out some answers...could you please let me know if there is any information on Evenity? I know it’s a new drug, but hopefully there is some information.

Also, if anyone could share some online videos, or other information regarding exercises.....would like to start this as well.

Thanks so much,
-Arlene

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