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Honored Contributor
Posts: 25,642
Registered: ‎05-10-2010

Welcome to my world!  Not only did I have a hysterectomy at 39, I also had a gastric bypass 25 years ago.  I work in healthcare, I am very savvy about health issues.  At no point did anyone ever tell me that after either of those surgeries I should take calcium and vitamin D.  If I'd been told, I would have done it!  Ok, fast foward 20 something years and after 3 years of undiagnosed chronic pain and an army of physicians; I finally get an endocrinologist who figured it out.    The worst vitamin D and calcium deficiency he'd ever seen.  Oh, yeah.  On top of that, none of my pcp's ever checked my vitamin D levels during my yearly physicials.  It's standard now, it wasn't years ago.  So, it's a constant battle to get my calcium and vitamin D levels near normal.  It's been 4 years since my last dexa scan so I do need to schedule another one.  My bone strength was in decent condition then but I don't know about now.    I still have bone pain and terrible muscle cramps.  It's not constant like before, just periodic.  And it was all avoidable.  That's the worst part.    

Super Contributor
Posts: 260
Registered: ‎03-10-2010

Wow, sorry to hear you all have as extreme (or much worse) life stories as mine!

It's distressing to know osteoporosis is so misunderstood, untested and underdiagnosed, as the disasterous damage rages on undetected. DEXA scans should be done earlier.

Still processing/reeling/scared from what I read about osteoporosis being incurable.

I'm nervous about receiving a 30min. Reclast IV that's supposed to be strong enough to last a year (!) only to have a bad reaction, as I often do to medications.

Thanks for giving me hope and info on what works for you, and what has the surprising  potential to bring back bone health.  I'll talk to my doctor about Prolia injections for my case, they sound so promising for many of you, with no side affects...yay!

 

Honored Contributor
Posts: 13,416
Registered: ‎03-13-2010

I never was told by any of my doctors about the dangers of osteoporosis either!  After going through menopause quite a few years ago, I had no idea that this would or could be a problem.  My PC doctor blamed my gynecologist and my gynencologist blamed my PC for dropping the ball, etc.!  Oddly enough it was another specialist I was going to for a problem totally unrelated to this who questioned whether I had been checked for this and questioned if I had been taking calcium and D.  After having a scan, discovered that I have severe osteo.  Lovely! 

 

So, because I have a lot of stomach issues, they determined that I probably could not handle any of the meds which are taken by mouth.  They decided that Reclast would be the best option for me.  I got this for a number of years and saw absolutely no improvement.  

 

My rheumatologist now has taken me off of it and I am not on anything for now.  I will be seeing him shortly to see what he wants me to do next.

 

Yes, it is really frightening.  

 

I take calcium, D, eat yogurt and try to eat as healthy as possible.  I can't exercise much because of other health issues but do try to walk when and as much as I can.

 

I know that Reclast is quite expensive.  When I was working, I had a deductible and my work insurance paid for most of it.  Now, that I am retired, I don't know how much would be covered if say, they decided to put me on Prolia.

 

Best luck and I hope you are able to get on a good treatment.

"A day without sunshine is like, you know, night." - Steve Martin
Esteemed Contributor
Posts: 6,848
Registered: ‎02-22-2015

Re: Osteoporosis

[ Edited ]

@chrystaltree  Please have another DEXA! Mine are done every other year like clockwork. You are way overdue. This is worrisome to me. Let us know how the results are when you've had it completed. I care. 

 

Honored Contributor
Posts: 25,642
Registered: ‎05-10-2010

@BirkiLady 

 

Yes, I scheduled my Dexa Scan.  It will be  done on 4/30.  My PTH hormones are sky high again so I'm worried about my bone strength.  It's distressing because I thought I had a handle on this.    

Esteemed Contributor
Posts: 6,848
Registered: ‎02-22-2015

@chrystaltree  I'm so sorry to read this, but delighted to know your DEXA is on your calendar. Was worried about you. Imagine you'll have some decisions to make like so many of us. I contacted some of my other specialists, read as much as I could find about Prolia and asked on this Forum. The positives were overwhelming; just a few negatives (and there will always be the Negative Nellies about anything). So I went for it. Only crummy part is waiting two years for another DEXA!! I'm the kind of person who wants to know if it's helping or not. With my back fractures, I can't tell if it feels stronger or not. 

 

Keeping you in my thoughts and prayers for a mid-range DEXA and a med that will keep your build your bones. Who knew we'd be fighting this battle when we were carefree young women? Never dreamed such a thing. 

 

My DEXA was at the low end of the mid-range this month. I've been assured there should be help for my hips and bones; no promises on my remaining fracture which isn't healing. I'll take what I can get at this point. Best wishes for improved health. 

Super Contributor
Posts: 260
Registered: ‎03-10-2010

BirkiLady, I cringe when I see young HS kids walking back to school with Big Gulp sodas and a bag of Cheetos for lunch. Those days of thinking it will never happen to me.

How little we know or suspect whats ahead....even when we do eat well.

 

Honored Contributor
Posts: 8,153
Registered: ‎03-14-2010

Re: Osteoporosis

[ Edited ]

@foggy!  Sorry to hear of your diagnosis...

 

@AngelPuppy1  @chrystaltree  @SilleeMee 

 

I've read everyone's posts in this thread...

I just googled for info and came across a couple of youtube videos that might interest you and others that have time to watch Smiley Happy

 

Dr Ken Berry - Reverse or Prevent Osteoporosis

 

Dr Ken Berry - Stop taking that Calcium Supplement

 

 

Honored Contributor
Posts: 14,488
Registered: ‎04-18-2013

@Susan Louise wrote:

@foggy!  Sorry to hear of your diagnosis.

 

I've read everyone's posts in this thread...

I just googled for info and came across a couple of youtube videos that might interest you and others that have time to watch Smiley Happy

 

Dr Ken Berry - Reverse or Prevent Osteoporosis

 

Dr Ken Berry - Stop taking that Calcium Supplement

 

 


@Susan Louise 

 

I just finished watching the vid on Osteoporosis.  EXCELLENT!!! info on bone health.  Dr. Berry is spot on.  All of this info I have read other places for the past several years and heard from an Integrative Physician who I see where I live.

 

I think I already know what he is going to say about Calcium supplements (having gotten that info before as well, from the Integrative Physician as well as other sources), but I will watch that one as well.

 

Thanks for posting!

Super Contributor
Posts: 260
Registered: ‎03-10-2010

SL thank you for your videos. I watched them and they differ from my doctors info.

I will be researching for myself, and talking more with her. I wish all doctors kept up with more recent medical reviews.