What would you do? Medication.

Posted by babs10 @babs10, Feb 12, 2024

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.

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

Profile picture for eeeliseee1 @eeeliseee1

I’m scared to pick and start too! Did you decide on a treatment plan?

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@eeeliseee1 who are you asking?

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Profile picture for windyshores @windyshores

He was a little vague but agreed to 2-3 months. My CTX is low...it might depend on that partially. But the new info for me was that it takes awhile for the mineralization in bones that Evenity causes, to happen, and you want that to happen before Reclast is started. Maybe your doc can also explain more specifically for your own situation.

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Wind shores , just had my blood markers done for the third time . My CTX is 138 . What do you mean of yours being low ?
My P1NP is 59 . I’m in my 10th month of Evenity .

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lm2 I took fosamax for several months, stopped because of GI side effects, the two years on Reclast, no improvement, one year of Prolia, still Dexa scans did not change. Now I've had 3 months of Evenity which I will stop because of insomnia, fatigue, joint pain. I'm thinking of a medication holiday just to see how I feel without all this stuff in my system that is not working

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Profile picture for lm2 @lm2

lm2 I took fosamax for several months, stopped because of GI side effects, the two years on Reclast, no improvement, one year of Prolia, still Dexa scans did not change. Now I've had 3 months of Evenity which I will stop because of insomnia, fatigue, joint pain. I'm thinking of a medication holiday just to see how I feel without all this stuff in my system that is not working

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I am very curious. What was your physicians rationale for this sequencing of osteoporosis meds?

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Profile picture for gravity3 @gravity3

I am very curious. What was your physicians rationale for this sequencing of osteoporosis meds?

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I'm not sure, I don't think I asked. I sure didn't know. I feel more in a place to question, but I feel I need a break

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Profile picture for kristie2 @kristie2

That is the plan for me also per my endocrinologist . She told me that after my last dose of Evenity I will take a one month break and then start the reclast .

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Just touching base. I did do 2injections of Prolia after the Evenity. I am so disappointed on my DEXA that I had today . After Evenity my T score in spine was -3.3 and now it’s-3.2!

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Profile picture for kristie2 @kristie2

Just touching base. I did do 2injections of Prolia after the Evenity. I am so disappointed on my DEXA that I had today . After Evenity my T score in spine was -3.3 and now it’s-3.2!

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I’m sorry to hear that Prolia hasn’t shown additional BMD gains so far. Sometimes the results can vary from the average expectations. Are you considering continuing with more doses of Prolia, or are you thinking about finishing up with Reclast?

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Hi read all the side effects of meds. To me the chance of ruining my kidneys, other organs sounds worse than just handling the pain with rest.Ibuprofen, heating pad, voltaren gel, patches etc.,etc.
had a broken neck and brain bleed about 5 years ago. A lot of pain with. The neck and back. Still. Declined surgery. Also had Evenity 3 years ago. Result a “significant” improvement in my bones. Still have a lot of pain in neck and upper back due to injury.
Need to do something. Acupuncture or orthopedic treatments. Any suggestions??

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Profile picture for mayblin @mayblin

I’m sorry to hear that Prolia hasn’t shown additional BMD gains so far. Sometimes the results can vary from the average expectations. Are you considering continuing with more doses of Prolia, or are you thinking about finishing up with Reclast?

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My sister did Prolia. Now on it for life. Lost a lot of weight. Looks frail. Did not know, once you start , you can’t stop. Regrets it
fine healthy looking before it

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