1. < Osteoporosis & Bone Health

Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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expresso409 | @expresso409 | Jul 24, 2021
In reply to @chocoholic "Hi expresso409 - thank you for the tip. I did some research into AlgaeCal; found their..." + (show)
@chocoholic

Hi expresso409 - thank you for the tip. I did some research into AlgaeCal; found their website but not much outside of it. Is there a site where the general user public shares their experiences? Thanks again!

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I would suggest calling and talking with them. They can direct you to further information. I have too many weird reactions to Rx to want to put something in my body that is going to be there for a length of time. Plus, after doc pushed one drug and I refused it - I pointed out that it specifically says anyone who has had TB should NOT take it - and I had it as a young child.
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Becky, Volunteer Mentor | @becsbuddy | Jul 24, 2021
In reply to @tsc "I think you are right to be concerned and shouldn't let yourself be backed into a..." + (show)
@tsc

I think you are right to be concerned and shouldn't let yourself be backed into a corner. I am 70, just diagnosed with osteoporosis, with a T-score of -3.1. It was kind of shocking because I've walked at least 5 hours a week for the last 25 years, done strength training on a regular basis, until the last year when I got really sick (but managed to keep walking through it). I also was just diagnosed with an autoimmune disorder that requires me to be on prednisone, a bone thinning drug. It will be long term. I have a rheumatologist I trust and a close friend who is an excellent doctor. The rheumatologist prescribed Alendronate and my friend supported that. It has been around for years. My mom took it (as Fosamax). She had bad osteoporosis - with the dowager's hump. She did not get additional fractures. My aunt, who took no drugs, died from spinal fractures. The Alendronate is a once a week dose. I'm going to try to build my bones back better so keep walking and do targeted exercises for the osteoporosis and try to get off the drug. They know enough about it now, that after 5 years on it, a drug holiday is taken. Carol Michaels is a PT and an expert on Osteoporosis. She has videos on You Tube - safe strength and stretching exercises for osteoporosis - with no forward flexion of the spine. By the way, I am not a paid consultant for Alendronate! Wishing you the best.

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@tsc I, too, got osteoporosis from taking prednisone for an autoimmune disease. And I’ve been taking alendronate, but my T-scores got worse. I started out with high doses of steroids and have been on 10mg for about 8 months. Ive added in mycofenilate mofetile (CellCept) in hopes of replacing the steroids. Been on steroids for about 3 1/2 years.
You sound like you’ve been doing everything right! It sure is a bummer when you do what’s right but it all goes wrong anyway. It also sounds like you have a family history of osteoporosis.
Have the steroids at least helped your autoimmune disease?

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1 reply
Teri | @tsc | Jul 24, 2021
In reply to @becsbuddy "@tsc I, too, got osteoporosis from taking prednisone for an autoimmune disease. And I’ve been taking..." + (show)
@becsbuddy

@tsc I, too, got osteoporosis from taking prednisone for an autoimmune disease. And I’ve been taking alendronate, but my T-scores got worse. I started out with high doses of steroids and have been on 10mg for about 8 months. Ive added in mycofenilate mofetile (CellCept) in hopes of replacing the steroids. Been on steroids for about 3 1/2 years.
You sound like you’ve been doing everything right! It sure is a bummer when you do what’s right but it all goes wrong anyway. It also sounds like you have a family history of osteoporosis.
Have the steroids at least helped your autoimmune disease?

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Hi Becky, Sorry to hear your T-scores got worse on the drug. That , too, is a bummer. I've been on prednisone since mid-May so maybe it's too early for it to have thinned my bones, But I had the autoimmune disorder (PMR +GCA, later) a year before diagnosis. For the last year, after my walk in the morning, all I could do was collapse on the couch because of the pain. So far, the prednisone as has been good to me, as good as it can be, I guess. I'll know more as I continue to taper. There is a family history of osteoporosis and also the PMR + GCA, my aunt had it too. And my mother-in-law, believe it or not. I hope the Cell Cept works for you.. It would be nice to hear if anyone was able to get better bone density through medications and exercise while staying on steroids.

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1 reply
Teri | @tsc | Jul 25, 2021
In reply to @chocoholic "Hi Becky - I've taken a couple of Pilates classes by accident, hanging around after an..." + (show)
@chocoholic

Hi Becky - I've taken a couple of Pilates classes by accident, hanging around after an aerobic class to see what it was like. It looks easy but it's a workout! I haven't been back since before covid...

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I'm going to jump into this discussion as I've been doing Pilates for more than 25 years. I purchased a number of DVDs so I could do it at home and also went to a weekly mat class in town. It stopped with COVID. At the same time we were in shutdown, I was overtaken with symptoms of PMR, an autoimmune disorder, which made all movement painful. Mat work wasn't possible. I managed a daily walk, though. Long story short, a year later, I've been diagnosed, gotten treatment - steroids - no more pain. Just diagnosed with osteoporosis though. In researching exercises for osteoporosis, I was surprised to learn that many of the Pilates exercises that involve SPINAL FLEXION can cause compression fractures of the spine. Lifting the head off the mat, abdominal curls, c curves, rolling like a ball, the saw, the hundreds, the helicopter, etc. with the head off the floor - are all dangerous. Carol Michaels is on YouTube and has excellent workout videos for persons with osteoporosis. I also found the attached folders at the National Osteoporosis Foundation website. I included yoga since so many Pilates exercises are similar. It's good for us to exercise, but we have to be aware that the wrong movements can cause us harm. All the Best and keep moving! tsc

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2 replies
JK | @contentandwell | Jul 25, 2021
In reply to @becsbuddy "Well, reality hits. I heard from my doctor shortly after I posted. She said my osteoporosis..." + (show)
@becsbuddy

Well, reality hits. I heard from my doctor shortly after I posted. She said my osteoporosis is actually worse and wants me to see a new endocrinologist. Dang, dang, DANG! Back to square one!

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Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such an evil condition, there don't seem to be any really great ways to deal with it. I sure hope that taking Tymlos will help me but I dread what I will need to be on afterward.

Good info, @tsc I used to do Pilates reformer at my health club but due to Covid I still have not returned there. I was thinking about it but the Delta variant struck so I will put it off longer -- 10 fully vaccinated people in my state, NH, have died from Covid and being on immunosuppressants my antibodies are low. I believe all of those 10 were over 60 years old.

I do a lot of exercise to Youtube videos so I will check out Carol Michaels. The person I use most, Jenny McClendon (https://www.youtube.com/channel/UCHufaoaq1VqjHvnv8zvg9pQ), is/was a physical therapist also so she is pretty knowledgeable about what is not good for osteoporosis but I think she just avoids those exercises knowing that since she caters to seniors many people probably do have osteoporosis.
JK

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2 replies
Teri | @tsc | Jul 25, 2021
In reply to @contentandwell "Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such..." + (show)
@contentandwell

Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such an evil condition, there don't seem to be any really great ways to deal with it. I sure hope that taking Tymlos will help me but I dread what I will need to be on afterward.

Good info, @tsc I used to do Pilates reformer at my health club but due to Covid I still have not returned there. I was thinking about it but the Delta variant struck so I will put it off longer -- 10 fully vaccinated people in my state, NH, have died from Covid and being on immunosuppressants my antibodies are low. I believe all of those 10 were over 60 years old.

I do a lot of exercise to Youtube videos so I will check out Carol Michaels. The person I use most, Jenny McClendon (https://www.youtube.com/channel/UCHufaoaq1VqjHvnv8zvg9pQ), is/was a physical therapist also so she is pretty knowledgeable about what is not good for osteoporosis but I think she just avoids those exercises knowing that since she caters to seniors many people probably do have osteoporosis.
JK

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Carol Michaels is also a Physical Therapist. I'll check out Jenny McClendon. Thanks!

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1 reply
JK | @contentandwell | Jul 25, 2021
In reply to @tsc "Carol Michaels is also a Physical Therapist. I'll check out Jenny McClendon. Thanks!" + (show)
@tsc

Carol Michaels is also a Physical Therapist. I'll check out Jenny McClendon. Thanks!

Jump to this post

@tsc As I said, she does nothing specific for osteoporosis but I believe most or all of her videos are safe for people with osteoporosis. They are meant for people over 50 or so but I know there she has many followers in their 60 and in their 70s as I am.
JK

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 25, 2021
In reply to @tsc "I'm going to jump into this discussion as I've been doing Pilates for more than 25..." + (show)
@tsc

I'm going to jump into this discussion as I've been doing Pilates for more than 25 years. I purchased a number of DVDs so I could do it at home and also went to a weekly mat class in town. It stopped with COVID. At the same time we were in shutdown, I was overtaken with symptoms of PMR, an autoimmune disorder, which made all movement painful. Mat work wasn't possible. I managed a daily walk, though. Long story short, a year later, I've been diagnosed, gotten treatment - steroids - no more pain. Just diagnosed with osteoporosis though. In researching exercises for osteoporosis, I was surprised to learn that many of the Pilates exercises that involve SPINAL FLEXION can cause compression fractures of the spine. Lifting the head off the mat, abdominal curls, c curves, rolling like a ball, the saw, the hundreds, the helicopter, etc. with the head off the floor - are all dangerous. Carol Michaels is on YouTube and has excellent workout videos for persons with osteoporosis. I also found the attached folders at the National Osteoporosis Foundation website. I included yoga since so many Pilates exercises are similar. It's good for us to exercise, but we have to be aware that the wrong movements can cause us harm. All the Best and keep moving! tsc

Jump to this post

Thank you for the helpful comments! I’m planning to have a long conversation before i actually start. Ill also look up Carol Michaels. Thank you!

REPLY
1 reply
Teri | @tsc | Jul 25, 2021
In reply to @becsbuddy "Thank you for the helpful comments! I’m planning to have a long conversation before i actually..." + (show)
@becsbuddy

Thank you for the helpful comments! I’m planning to have a long conversation before i actually start. Ill also look up Carol Michaels. Thank you!

Jump to this post

You're welcome.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 2021
In reply to @contentandwell "Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such..." + (show)
@contentandwell

Oh, no @becsbuddy How discouraging to discover that your osteoporosis has gotten worse. This is such an evil condition, there don't seem to be any really great ways to deal with it. I sure hope that taking Tymlos will help me but I dread what I will need to be on afterward.

Good info, @tsc I used to do Pilates reformer at my health club but due to Covid I still have not returned there. I was thinking about it but the Delta variant struck so I will put it off longer -- 10 fully vaccinated people in my state, NH, have died from Covid and being on immunosuppressants my antibodies are low. I believe all of those 10 were over 60 years old.

I do a lot of exercise to Youtube videos so I will check out Carol Michaels. The person I use most, Jenny McClendon (https://www.youtube.com/channel/UCHufaoaq1VqjHvnv8zvg9pQ), is/was a physical therapist also so she is pretty knowledgeable about what is not good for osteoporosis but I think she just avoids those exercises knowing that since she caters to seniors many people probably do have osteoporosis.
JK

Jump to this post

Hi All: I'd like to jump into this conversation about Pilates and osteoporosis. I've found a Youtube video titled Standing Pilates for Seniors which is quite good. Here is the link, https://www.youtube.com/watch?v=i3PYS_jsA1c&t=1038s

You might want to check it out and see if it might work for you until it feels safe to go back to indoor classes again. I find it quite helpful.

Will youy let me know what you think?

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