New , Any advice?

Posted by kay15 @kay15, 2 days ago

Hello everyone,
About 5 months ago I was diagnosed with osteoporosis at the age of 32. My doctor believes it's due to being on depo shot for 16 years.
After waiting 4 months I finally got into a specialist (Endo). We talked about my medical history and how I have a high risk for breakage on my hips with damage to my lower spine. To make sure I get on the correct medical I'll have a bunch of tests coming up, blood,urine,saliva. After all those tests I have a follow up to go over medication. My question is , does anyone have any advise on how to handle life now? Dos, don't? Questions I should ask my doctor? (I have a problem in advocating for myself if I don't know what to ask) Anything you recommend to someone starting out in this journey is appreciated. Thanks!

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

Oh to be 32 again....
Well, kay15, you came to the right place. In a couple days you're going to have more information and advice than you'll know what to do with. I guess the first thing is, don't try to digest it all at once.

People will be asking you about your various T-scores - presumably you've had a dexa bone scan? - and labs, and whether you're seeing only an endo or an orthopedist too... There are a number of bone-building medications that we deal with - we're mostly 2 to 3 times older than you, FWIW - and they all have benefits and drawbacks and risks, so one thing you can do is spend some time researching those things. Tymlos, Evenity, Reclast, Forteo, Prolia, are the commonest meds; I'm sure I'm missing some. Your endo should know if there are contraindications for any of them given your history. You may also need or want to embark on an exercise regimen to build some core strength, and again your doc would be a good place to start in recommending exercises good or bad for your specific body. But exercise plans are ubiquitous on the internet.

But... one of the things many of us have learned is that our doctors don't know everything and that learning and advocating for ourselves is crucial. Not knowing what to ask or where to start is something most of us have had to deal with in all of this. You might look at some of the forum topics in the Mayo list of supports and read through the ones that deal with osteoporosis or anything that sounds like it's related to you. That will be overwhelming at first 🙂 but it may give you some general themes to think about and ask you doc about. It sounds daunting, but the fact that you're here doing something about it is the best first step.

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Many of us have osteoporosis caused by many factors. Your treatment is probably different from mine as I am postmenopausal and must avoid estrogen due to breast cancer risk. Others might have low bone density due to metabolic syndrome, result of taking aromatase inhibitors, genetic causes, other. Medicine-induced bone loss might allow bone recovery that is different from these other issues.
There are a lot of questions you might ask, but I’d suggest adding these to your list:
Can I recover bone density after stopping depo shots? How quickly would you expect new bone growth?
Can I boost bone recovery by taking a med temporarily? (Some drugs, once you start, you must continue with it or another med in order to keep the new bone)
Is this drug building bone or stopping the turnover of bone loss? How does this affect bone strength? What will this treatment look like in 3, 5, 10, 15 years?

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Hi, @kay15 I recently put together the post linked below. My intention was to collect some of the resources recommended by this group that were most helpful to me when I was first diagnosed so others could find them more easily. These resources helped me formulate many of the questions I had for my doctor. The videos provide a good introduction to the different medicines currently available, and they also introduce the importance of treatment sequencing.

Given your young age, one question you may want to ask is what a long term management plan will look like.
https://connect.mayoclinic.org/discussion/new-osteoporosis-diagnosis-where-to-start/

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Thank you all for your helpful comments. As most of you know it's very overwhelming once your diagnosed. I'm full of emotions and I'm trying my best keeping it together right now but all your comments and links have been able to keep my mind at ease.

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