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What would you do? Medication.
Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.
I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.
My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”
Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?
I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.
I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.
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Honestly, I vacillate between anger, sadness and dismay when I think about the missed opportunities, misinformation that I have encountered along this path
I tell everybody who mentions their ones about this group for excellent info. Thanks everyone
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5 ReactionsCheck out patientrevolution.org
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2 ReactionsI am wondering if hormonal treatments are sufficient for those of us with fractures already, or severe scores. I had breast cancer that was fed by hormones so not an option for me anyway, but concerned that hormones won't be as effective as bone meds. If your doc says okay, then good luck!
I share the same vacillation and totally agree about the missed opportunities! I so wish I had listened to my OGBYN during perimenopause, instead of to endocrinologist.
It is possible that they won't be enough if started later in the game. BUT, if you look at absolute risk reduction on many of the bone meds, the studies you can find on hormones, when you dig, show similar risk reductions, so fingers crossed for those of us trying them. I am sorry that you cannot use them. They were naturally occurring substances in our bodies, before some of us developed osteoporosis, so logic and bone marker tests provides hope. We can check to see if we are receiving benefit from HRT and if not, reevaluate choices.
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2 ReactionsAbsolutely, so very frustrating! I fear too many receive their research from drug reps. Additionally, most of the doctors are over booked and don't have the time that it takes to adjust hormones. It's not always fast and requires appointment time to adjust.
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2 ReactionsI used to think they'd all be on the same page, but am realizing how foolish and naive a thought that is.
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2 ReactionsHave you assessed your fracture risk by using your t-score? Google FRAX assessment- if your 10 year risk is under 15% it's appears unlikely you'll need meds. If over 20%, it's likely you'll need them.
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1 ReactionMy DXA results indicated an 18% risk so I'm in the gray area in between scores. On the Canadian FRAX chart, I was at 17%. If I'd had a fracture, it would be a no brainer for me, but I haven't and I fell twice in the mountains last summer training for a trek in the fall and had no problems so think (key word: think) my bone quality is decent. It's not an obvious choice for me. That said, my intense concern about a fracture is greater than my significant aversion to drugs.
Web MD: "If your FRAX score is 3% or more for hip fracture, or 20% or more for other major osteoporosis fractures, you are at increased risk of fracture. Your doctor may recommend treatment to reduce your fracture risk."
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1 ReactionMy DEXA report has 2 FRAX scores.
Major Osteoporotic Fracture: 33.9 %
Hip Fracture: 16.4 %
Yet my lowest T-score was for Right Femoral Neck
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