Younger than usual with severe osteoporosis

Posted by hopefullibrarian @hopefullibrarian, Sep 25, 2023

Looking for others with severe osteoporosis at a "youngish" age, for mutual support. I am 53 with severe osteoporosis---t-scores: lumbar -3.7, and femoral neck -3.2. I had a vertebral compression fracture at age 50, but wasn't given a DEXA scan until 2 years later.

Like so many, I did everything right in my adult life--exercise, healthy diet, supplements. It's at least, in part genetic, and partly because I am very petite and thin. My mother is almost 80, was diagnosed with osteoporosis in her 50s, but even now, without any treatment, her t-scores are not as bad as mine.

In May, I had my first Prolia injection. My insurance denied coverage for Evenity. No other options were given to me. The advice I received was, "Don't worry, take suppliments, keep exercising, and don't fall."

I am hopeful, while being realistic. I'm looking to connect with others who understand.

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

@hopefullibrarian

Thank you so much for taking the time to offer guidance. As a librarian, it should be easy enough to get my hands on Dr. McCormick's book. I'll also do a deeper dive into the threads on here. All the best to you as well.

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It might be awhile for you to get the book from the library, It is such a great resource it will be worth buying it and taking your time to educate yourself. Those of us that have been on this site for awhile have read it and it really goes into detail about everything you would want to know about Osteoporosis and the treatments available. I was also diagnosed young ( age 50). I have not had any fractures ( thankfully) and wish I had taken the time to educate myself way back than ( I am 62 now). My mom also had Osteoporosis and passed away after her second hip fracture. This is a life long condition and you need to find the right Physician who will listen to your concerns, order the correct lab tests and support you.

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@hopefullibrarian
Hi! I just joined this forum because I am 51 and was recently diagnosed with Osteoporosis.My story is similar to yours in that I have done what I could to strengthen my bones and have a mother who was diagnosed with Osteoporosis in her 50’s. She is in her 80’s and has been okay.
My story: I knew I had low bone density and was checked last year for underlying causes but the doctor did not find any causes. I had another DEXA this July. My scores were: -2.6 Lumbar spine, -2.8 Femoral neck, -2.6 hip. My Trabecular Bone Score for regions L1-L4 is 1.211 which “indicates partial degradation of bone micro architecture.” I lost 9.4% in bone mineral density in my spine in just this last year despite doing recommended exercise. So, I barely know what this means because when I got the results I called my doctor who runs a bone clinic and was told I could not book an appointment because she is booked out. This led to a frustrating series of messages in my portal in which she told me to take a Bisphosphonate. I expressed concern at starting this medication at a relatively young age but never got an answer and have felt increasingly doomed. I am scheduled to see a different doctor who is an Endocrinologist this Friday. I joined this forum for support and to start to research my options.
Thank you @pedsnurse61 for the book recommendation. I just ordered it. I am feeling rather lost so grateful to have found this group. Also, thanks @artscaping for your comments. I don’t even know what Tymlos is but it gives me hope that there are effective treatments.

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@sisby

@hopefullibrarian
Hi! I just joined this forum because I am 51 and was recently diagnosed with Osteoporosis.My story is similar to yours in that I have done what I could to strengthen my bones and have a mother who was diagnosed with Osteoporosis in her 50’s. She is in her 80’s and has been okay.
My story: I knew I had low bone density and was checked last year for underlying causes but the doctor did not find any causes. I had another DEXA this July. My scores were: -2.6 Lumbar spine, -2.8 Femoral neck, -2.6 hip. My Trabecular Bone Score for regions L1-L4 is 1.211 which “indicates partial degradation of bone micro architecture.” I lost 9.4% in bone mineral density in my spine in just this last year despite doing recommended exercise. So, I barely know what this means because when I got the results I called my doctor who runs a bone clinic and was told I could not book an appointment because she is booked out. This led to a frustrating series of messages in my portal in which she told me to take a Bisphosphonate. I expressed concern at starting this medication at a relatively young age but never got an answer and have felt increasingly doomed. I am scheduled to see a different doctor who is an Endocrinologist this Friday. I joined this forum for support and to start to research my options.
Thank you @pedsnurse61 for the book recommendation. I just ordered it. I am feeling rather lost so grateful to have found this group. Also, thanks @artscaping for your comments. I don’t even know what Tymlos is but it gives me hope that there are effective treatments.

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I'm glad you found this group too.

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@sisby

@hopefullibrarian
Hi! I just joined this forum because I am 51 and was recently diagnosed with Osteoporosis.My story is similar to yours in that I have done what I could to strengthen my bones and have a mother who was diagnosed with Osteoporosis in her 50’s. She is in her 80’s and has been okay.
My story: I knew I had low bone density and was checked last year for underlying causes but the doctor did not find any causes. I had another DEXA this July. My scores were: -2.6 Lumbar spine, -2.8 Femoral neck, -2.6 hip. My Trabecular Bone Score for regions L1-L4 is 1.211 which “indicates partial degradation of bone micro architecture.” I lost 9.4% in bone mineral density in my spine in just this last year despite doing recommended exercise. So, I barely know what this means because when I got the results I called my doctor who runs a bone clinic and was told I could not book an appointment because she is booked out. This led to a frustrating series of messages in my portal in which she told me to take a Bisphosphonate. I expressed concern at starting this medication at a relatively young age but never got an answer and have felt increasingly doomed. I am scheduled to see a different doctor who is an Endocrinologist this Friday. I joined this forum for support and to start to research my options.
Thank you @pedsnurse61 for the book recommendation. I just ordered it. I am feeling rather lost so grateful to have found this group. Also, thanks @artscaping for your comments. I don’t even know what Tymlos is but it gives me hope that there are effective treatments.

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Tymlos is one of three bone builders that you inject on a daily basis. The other two are Forteo and Evenity. As soon as you are ready, you can start researching doing some research to see if one of those choices might be helpful. I look forward to our Connect friendship.

May you have peace and contentment.
Chris

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@pedsnurse61

It might be awhile for you to get the book from the library, It is such a great resource it will be worth buying it and taking your time to educate yourself. Those of us that have been on this site for awhile have read it and it really goes into detail about everything you would want to know about Osteoporosis and the treatments available. I was also diagnosed young ( age 50). I have not had any fractures ( thankfully) and wish I had taken the time to educate myself way back than ( I am 62 now). My mom also had Osteoporosis and passed away after her second hip fracture. This is a life long condition and you need to find the right Physician who will listen to your concerns, order the correct lab tests and support you.

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Are you on any medications for osteoporosis? If so, any side effects and have you gotten good results from the meds? Thanks.

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@ripley

Are you on any medications for osteoporosis? If so, any side effects and have you gotten good results from the meds? Thanks.

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Currently I am on Fosimax and a low dose Premarin patch, both prescribed by my Endocrinologist. No side effects from these medications. Unfortunately I have been on several other medications and had no improvement in my DEXA numbers ( I am unique and unusual). The last medication before Fosimax I was taking Evenity but had to stop due to side effects that I had. I have only been on Fosimax for 2 months.

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@sisby

@hopefullibrarian
Hi! I just joined this forum because I am 51 and was recently diagnosed with Osteoporosis.My story is similar to yours in that I have done what I could to strengthen my bones and have a mother who was diagnosed with Osteoporosis in her 50’s. She is in her 80’s and has been okay.
My story: I knew I had low bone density and was checked last year for underlying causes but the doctor did not find any causes. I had another DEXA this July. My scores were: -2.6 Lumbar spine, -2.8 Femoral neck, -2.6 hip. My Trabecular Bone Score for regions L1-L4 is 1.211 which “indicates partial degradation of bone micro architecture.” I lost 9.4% in bone mineral density in my spine in just this last year despite doing recommended exercise. So, I barely know what this means because when I got the results I called my doctor who runs a bone clinic and was told I could not book an appointment because she is booked out. This led to a frustrating series of messages in my portal in which she told me to take a Bisphosphonate. I expressed concern at starting this medication at a relatively young age but never got an answer and have felt increasingly doomed. I am scheduled to see a different doctor who is an Endocrinologist this Friday. I joined this forum for support and to start to research my options.
Thank you @pedsnurse61 for the book recommendation. I just ordered it. I am feeling rather lost so grateful to have found this group. Also, thanks @artscaping for your comments. I don’t even know what Tymlos is but it gives me hope that there are effective treatments.

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Are you sure that the most recent DexaScan is correct? Was it on the same machine? Something you should should discuss with

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ad 1 peolia shot last november and had a severe reaction and it turned my world upside down they say it leaves your body after the 6 wks but does it really ever leave the drs answer is i don't know. my ans is why don;t you know and try and find out instead of saying oh you can't take prolia no kidding what i would do if i were you is tru holistic take supplements the right ones the right way and take a good collagen dr keith mccormick's book is great great bones i read 2 chapters and already know more than my dr. it is truly a must for someone with osteoprosis especially so young

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@pedsnurse61

Currently I am on Fosimax and a low dose Premarin patch, both prescribed by my Endocrinologist. No side effects from these medications. Unfortunately I have been on several other medications and had no improvement in my DEXA numbers ( I am unique and unusual). The last medication before Fosimax I was taking Evenity but had to stop due to side effects that I had. I have only been on Fosimax for 2 months.

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fosamax is a medicine that has been here for along time prolia and evenity which they want to take fosamax's place have not stay with the tried snd true. pro;ia cn't say about evenity has really not been tested for that long

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@sisby

@hopefullibrarian
Hi! I just joined this forum because I am 51 and was recently diagnosed with Osteoporosis.My story is similar to yours in that I have done what I could to strengthen my bones and have a mother who was diagnosed with Osteoporosis in her 50’s. She is in her 80’s and has been okay.
My story: I knew I had low bone density and was checked last year for underlying causes but the doctor did not find any causes. I had another DEXA this July. My scores were: -2.6 Lumbar spine, -2.8 Femoral neck, -2.6 hip. My Trabecular Bone Score for regions L1-L4 is 1.211 which “indicates partial degradation of bone micro architecture.” I lost 9.4% in bone mineral density in my spine in just this last year despite doing recommended exercise. So, I barely know what this means because when I got the results I called my doctor who runs a bone clinic and was told I could not book an appointment because she is booked out. This led to a frustrating series of messages in my portal in which she told me to take a Bisphosphonate. I expressed concern at starting this medication at a relatively young age but never got an answer and have felt increasingly doomed. I am scheduled to see a different doctor who is an Endocrinologist this Friday. I joined this forum for support and to start to research my options.
Thank you @pedsnurse61 for the book recommendation. I just ordered it. I am feeling rather lost so grateful to have found this group. Also, thanks @artscaping for your comments. I don’t even know what Tymlos is but it gives me hope that there are effective treatments.

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Hi @sisby,
I got to thinking about you recently, when I watched a YouTube video by Dr. Doug Lucas about the medical system's failure to diagnose osteoporosis before the age of 65.
What prompted you to have your first DEXA? Was it your family history, a fracture, or something else? I'm glad that you were, at least, diagnosed before it got into the severe range.
The statistics Dr. Doug provided are shocking, and disgraceful. Since being diagnosed, I've been angry at the medical system that failed me by not screening earlier. Dr. Doug's video left me feeling grateful that I was diagnosed at all.
How are you getting along? Did you start a treatment? More importantly, are you feeling more optomistic?

Dr. Doug's video: https://youtube.com/watch?v=OH9kxUvxK7M&si=ZCviYTPSh4Ox7vGe

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