1. < Osteoporosis & Bone Health

51 yo just diagnosed with Osteoporosis

Posted by stacibw @stacibw, Mar 26 8:57am

I had my first DEXA scan at 49 and it came back as having osteopenia. I received a diagnosis of osteoporosis this week, with 14.7% loss in density and what my PCP called “aggressive” osteoporosis. Menopause at 47.

I’m healthy overall, no other medical issues. And I’m very confused and overwhelmed.

She recommended starting medications immediately, and said that she would allow me to use any of them that I wanted to try (pills, injections or IV) - specifically mentioned Fosamax, Boniva and Prolia.

I don’t know where to begin to educate myself. I WANT to attempt to combat this naturally - via diet and exercise, but I need to make the wisest decision.

Family history of long life - all maternal side until late 90’s, and paternal side into late 80’s - so long term bone health and overall health is important.

Where do I start?

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

gently | @gently | Mar 26 10:59am
In reply to @stacibw "Thank you for all of this info. Why do I need a rheumatologist or an endocrinologist?" + (show)
@stacibw

Thank you for all of this info.

Why do I need a rheumatologist or an endocrinologist?

Jump to this post

stacibw, you might not need an endocrinologist It seems you have a really good PCP. Though she lists antiresorptives, she probably understands that with "aggressive osteoporosis" or advanced osteoporosis you would usually be advised to start on an anabolic (the medications that build bones) because taking antiresorptives will blunt some of the advantage of subsequent anabolics.
Some endocrinology offices are better at insurance approvals, since they know exactly what to write. You might have more trouble getting bone markers from a PCP.
Osteoporosis is a fascinating subject and the information may seem overwhealming. Soon you'll be answering all the questions for the next guy.

REPLY
Christine | @thisoldewe | Mar 26 1:28pm
In reply to @gently "hi stacybw, you are starting at the best place. We have a lot of variant opinions..." + (show)
@gently

hi stacybw,
you are starting at the best place. We have a lot of variant opinions and loads of experience. And we've all been exactly where you are. It is best to challenge everything you read and respond with questions that we'll love to answer. My opinion:
Mostly of us want to combat this naturally. You can't make up for five years of low estrogen, hence five years of bone loss without medication. Very luckily there are two amazing medications--Tymlos and Forteo.
The medication divided by the way they work are called antiresorptive and anabolic. The drugs your PCP mentions are all antireorptive. They preserve older bone and while they do prevent fracture, they halt the renewal process that resolves fissures and they reduce the the blood supply within the bone.
The drugs that stimulate new bone growth are Tymlos, Forteo and Evenity. Evenity stimulates new bone growth in the first few months and then becomes antiresorptive. It is a newer drug with boxed warnings about cardiac issues.
They say that once you begin osteoporosis medications, you can never stop. I hold this concept as true.
We take medications to prevent fracture.
I've been on Forteo for almost a year. I haven't had side effects.
I know what I'd do in your situation because this is what I did.
Do the research.
Ask your doctor (I like her flexibility) for bone markers. P1NP and CTX before you begin medication.
Take Forteo.
Get bone markers initially and every three months.
Watch this video https://www.youtube.com/watch?v=Cd0YT-OV97c
And keep your questions coming this way.

Jump to this post

Thank you 'gently' for posting this excellent video.
Very informative; hopeful with new areas of possibilities and exercises. Great!

REPLY
windyshores | @windyshores | Mar 26 1:45pm
In reply to @babs10 "I'm on cancellations lists all over the city and I'm not exaggerating, but I have NOT..." + (show)
@babs10

I'm on cancellations lists all over the city and I'm not exaggerating, but I have NOT called at 10. Such a great suggestion. Thanks, @windyshores. 🙂

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@babs10 especially Fridays and Mondays but calling at 10 has worked for me on all days, so many times!!!!! It helps to chat a little too 🙂

REPLY
stacibw | @stacibw | Mar 27 6:54am
In reply to @gently "hi stacybw, you are starting at the best place. We have a lot of variant opinions..." + (show)
@gently

hi stacybw,
you are starting at the best place. We have a lot of variant opinions and loads of experience. And we've all been exactly where you are. It is best to challenge everything you read and respond with questions that we'll love to answer. My opinion:
Mostly of us want to combat this naturally. You can't make up for five years of low estrogen, hence five years of bone loss without medication. Very luckily there are two amazing medications--Tymlos and Forteo.
The medication divided by the way they work are called antiresorptive and anabolic. The drugs your PCP mentions are all antireorptive. They preserve older bone and while they do prevent fracture, they halt the renewal process that resolves fissures and they reduce the the blood supply within the bone.
The drugs that stimulate new bone growth are Tymlos, Forteo and Evenity. Evenity stimulates new bone growth in the first few months and then becomes antiresorptive. It is a newer drug with boxed warnings about cardiac issues.
They say that once you begin osteoporosis medications, you can never stop. I hold this concept as true.
We take medications to prevent fracture.
I've been on Forteo for almost a year. I haven't had side effects.
I know what I'd do in your situation because this is what I did.
Do the research.
Ask your doctor (I like her flexibility) for bone markers. P1NP and CTX before you begin medication.
Take Forteo.
Get bone markers initially and every three months.
Watch this video https://www.youtube.com/watch?v=Cd0YT-OV97c
And keep your questions coming this way.

Jump to this post

Thank you. This video was really helpful. I needed it explained and broken down on this level.

REPLY
nme1985 | @nme1985 | Mar 27 8:37am

What are you scores? I tried medicine once for three months and I had such terrible side effects. I am taking bio, identical, hormones, testosterone, pellets, estradiol and progesterone. Also magnesium, zinc, multivitamin, calcium, etc. strength, resistance training, plus Pilates twice a week. I am not familiar with aggressive osteoporosis I was told 10 years ago to go on medicine and I have maintained my scores, I work hard on this try to avoid climbing steps without holding the railing. I do not ride a bicycle anymore. There are many YouTube videos on what to do for osteoporosis. I am sure you will get a lot of replies on this site. It is wonderful for me. I am trying the pallet therapy and seeing what happens in the next year but I am 67 years old , if I listen to the endocrinologist 10 years ago, I would’ve been on medicine for 10 years… I am so happy I didn’t take that route, but I had to fight them all the way there are special exercises for osteoporosis with bands get yourself some weights, no more than 4 pounds at this time and use them every day . Good luck to you. Remember everybody is different. If you have breast cancer in your family history than hormones is not the way to go. I also was early with menopause. Good luck.

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kayabbott | @kayabbott | Mar 27 8:43am

I'm 69 and my osteoporosis started 9 years ago. I've had three Reclast infusions in the last 4 years that reversed enough of the bone loss. I take vitamins D3 and B complex, and calcium/magnesium citrate (helps absorption). I do a lot of resistance exercise, weights and walking (running if your knees are good). Bikers (even men) tend to get osteoporosis because it is aerobic but not resistance; we sweat out the calcium, sodium, and other salts unless we replace them with electrolytes while exercising. Hormone replacement with estrogen can help with bone retention, but breast cancer risk is too high for me. It is good to get a PT or a trainer at a rec center that is knowledgeable about exercising for osteo, what to do and what not to. My osteoporosis was probably also impacted by celiac disease, malabsorption and GI damage from gluten (wheat, rye, barley). Diet can be important to osteoporosis as well.

REPLY
gently | @gently | Mar 27 10:41am
In reply to @stacibw "I have been on hormone replacement therapy for one year." + (show)
@stacibw

I have been on hormone replacement therapy for one year.

Jump to this post

stacibw,
gradually you'll decide on a path toward bone health. More interesting replies will come in on natural remedies. And no one will press you to accept their ideas. We are all riding the surface of information without knowing for sure.
The "agressive"ness of your osteoporosis leads me to windyshore's suggestion about secondary causes.
Many of us are small boned. Dexa over estimates the degree of osteoporosis in small bones.

REPLY
1 reply
windyshores | @windyshores | Mar 27 10:34pm
In reply to @gently "stacibw, gradually you'll decide on a path toward bone health. More interesting replies will come in..." + (show)
@gently

stacibw,
gradually you'll decide on a path toward bone health. More interesting replies will come in on natural remedies. And no one will press you to accept their ideas. We are all riding the surface of information without knowing for sure.
The "agressive"ness of your osteoporosis leads me to windyshore's suggestion about secondary causes.
Many of us are small boned. Dexa over estimates the degree of osteoporosis in small bones.

Jump to this post

@gently can you share any links or studies about DEXA's and small bones. I have read that that is not true and will try to find that too. This is an important point to resolve for some of us increasingly tiny people! (For me, with fractures, I guess it is not that relevant!)

REPLY
stacibw | @stacibw | Mar 28 10:22am

I am not a small woman. I would consider myself average. Was 5’6 but now 5’3” but not “thin boned” at all.

I am seeking a good endocrinologist for testing for underlying conditions.

I also have an appt scheduled with my gyn for a second opinion on the “aggressiveness” that my pcp spoke of.

I am seeking a functional medicine doc as well and have reached out to a dietician who specializes in osteoporosis.

Learning so much and very very thankful for early detection and this group. You type of things I’ve never even heard of - so I’m learning as much as I can and making NO decisions until I am comfortable.

Thank you so much!!

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