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Anyone actually feel better on any of these drugs?

Posted by mss713 @mss713, 3 days ago

I am normally pretty medication adverse, taking only what is absolutely necessary. I am especially fearful of the osteoporosis drugs that seem to have an equal number of benefits v/s risks, and the long-term if not life-time use is unappealing. Has anyone actually felt better with any of these drugs? Thanks in advance

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oopsiedaisy | @oopsiedaisy | 2 days ago

What do you mean by "feeling better"? Generally, people don't feel different until they fracture. That was the case for me. I've had osteoporosis since 2018 and didn't feel any different until 2023 when I fractured my T-8 vertebra. Then I felt much worse for 18 months then gradually better.

I've been on medications since 2018 (Fosamax, followed by Tymlos, Forteo, and Evenity). I haven't fractured for almost 3 years so that's good. My goal is to prevent another fracture as the first one has caused an impact that will last for the rest of my life. I am pain free 95% of the time but I have days where the back pain resulting from the fracture can be significant.

The whole point of the medication is to prevent a fracture. That's really the only way to measure the outcome, in my opinion.

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roseincalifornia | @roseincalifornia | 2 days ago
In reply to @sirrom "@roseincalifornia I have a problem when I see "relative risk reduction" versus "actual risk reduction". Relative..." + (show)
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@roseincalifornia
I have a problem when I see "relative risk reduction" versus "actual risk reduction". Relative risk reduction seems to be the preferred metric used by pharma. From Google:

Relative Risk Reduction (RRR) measures the percentage drop in risk between an experimental group and a control group. Actual or Absolute Risk Reduction (ARR) measures the true mathematical difference in risk between the two groups. RRR often sounds massive and exaggerates a treatment's effect, while ARR shows the actual real-world benefit.

Clear Comparison Example: Imagine a clinical study for a new heart pill tested on 10,000 people over a year. Control Group (no pill): 200 out of 5,000 people (4%) have a heart attack. Treated Group (with pill): 100 out of 5,000 people (2%) have a heart attack.

The RRR is 50% because the risk dropped from 4% down to 2%—a half-size reduction in the rate itself.

The ARR is 2% because the actual percentage difference is 4% - 2%. Out of 100 people who take the pill, only 2 people are actively saved from a heart attack.

Marketing and Media: News headlines love using RRR (e.g., "Cuts risk in half!") because it sounds impressive, even if the actual risk was tiny to begin with.

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@sirrom

Clinical trials use relative risk because it stays relatively consistent regardless of a specific patient's baseline risk.

However, your "absolute" benefit depends heavily on your starting point.
For example, if you have very severe osteoporosis or multiple prior fractures (high baseline risk), a 50% relative reduction yields a much larger absolute benefit for you than it would for someone with mild osteopenia (low baseline risk).

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jozer | @jozer | 1 day ago
In reply to @oopsiedaisy "What do you mean by "feeling better"? Generally, people don't feel different until they fracture. That..." + (show)
Profile picture for oopsiedaisy @oopsiedaisy

What do you mean by "feeling better"? Generally, people don't feel different until they fracture. That was the case for me. I've had osteoporosis since 2018 and didn't feel any different until 2023 when I fractured my T-8 vertebra. Then I felt much worse for 18 months then gradually better.

I've been on medications since 2018 (Fosamax, followed by Tymlos, Forteo, and Evenity). I haven't fractured for almost 3 years so that's good. My goal is to prevent another fracture as the first one has caused an impact that will last for the rest of my life. I am pain free 95% of the time but I have days where the back pain resulting from the fracture can be significant.

The whole point of the medication is to prevent a fracture. That's really the only way to measure the outcome, in my opinion.

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@oopsiedaisy You have been on prescription meds since 2018, and you fractured anyway in 2023? I have read that is possible, even when on drugs and maybe one fracture is better than many, many more without drugs but I thought the meds were to prevent fractures - always. main reason for treatment with powerful drugs. Sounds like you had a tough time; I hope you are doing well now!

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msoto8318 | @msoto8318 | 1 day ago
In reply to @oopsiedaisy "What do you mean by "feeling better"? Generally, people don't feel different until they fracture. That..." + (show)
Profile picture for oopsiedaisy @oopsiedaisy

What do you mean by "feeling better"? Generally, people don't feel different until they fracture. That was the case for me. I've had osteoporosis since 2018 and didn't feel any different until 2023 when I fractured my T-8 vertebra. Then I felt much worse for 18 months then gradually better.

I've been on medications since 2018 (Fosamax, followed by Tymlos, Forteo, and Evenity). I haven't fractured for almost 3 years so that's good. My goal is to prevent another fracture as the first one has caused an impact that will last for the rest of my life. I am pain free 95% of the time but I have days where the back pain resulting from the fracture can be significant.

The whole point of the medication is to prevent a fracture. That's really the only way to measure the outcome, in my opinion.

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@oopsiedaisy
What were you doing in 2023 that you caused this fracture? Everyone in these posts always leaves out that most important piece. That's what we can actually learn from. Please do tell!

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bswpb | @bswpb | 1 day ago
In reply to @mss713 "@gravity3 By "feeling better" I mean, does the increase in bone density actually yield any perceptual..." + (show)
Profile picture for mss713 @mss713

@gravity3 By "feeling better" I mean, does the increase in bone density actually yield any perceptual change in how you feel when moving, exercising, etc. I already have some chronic back pain as a result of scoliosis and a potential side effect of more muscle pain secondary to a medication is not a pleasant thought. So, that is one of my primary concerns. I appreciate the response from other, however, which are encouraging.

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@mss713 for me the feeling better with movement came after I had been working out after a few months and more so after I switched from shoes with a lot of cushioning to a barefoot shoe.

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vmcd | @vmcd | 14 hours ago

After suffering multiple compression fractures within a year’s time my “feel better” from having been on Forteo since 2023 is that I haven’t fractured since. (It did take a while for my bones to get strengthened / 3 months). The pain suffered from those fractures was debilitating. It’s been great to have my mobility back. I still have chronic pain but it’s not constant and certainly not as rough as before. Walking, reminding myself to sit up, stand straight, doing some of the exercises I learned when going to physical therapy has been a tremendous help, also knowing when it’s time to take a break and lie down for a bit. “Motion is lotion” is a phrase someone shared on this site a while back, and that’s so true…even when I don’t feel like it, I force myself to be active.

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ou14mejc | @ou14mejc | 11 hours ago

I don't feel "better" or "different" after taking osteoporosis medications. However, the difference in my body is substantial. My osteoporosis was so bad, no surgeon would touch my back or shoulder. I need a shoulder replacement and likely a hip replacement and back surgery. I rejected the medications for years due to fear. I was told that a hip fracture would never heal and could actually be fatal. Needing surgeries desperately, I finally agreed and I'm glad that I did. My spine improved so that I am now in the osteopenia range and I have started Evenity to get my hips out of the osteoporosis range. It's a personal decision and I certainly understand the reluctance to get on any of these drugs, but I am glad that I did. I have suffered with my back for years and I can now schedule back surgery.

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msoto8318 | @msoto8318 | 1 hour ago
In reply to @vmcd "After suffering multiple compression fractures within a year’s time my “feel better” from having been on..." + (show)
Profile picture for vmcd @vmcd

After suffering multiple compression fractures within a year’s time my “feel better” from having been on Forteo since 2023 is that I haven’t fractured since. (It did take a while for my bones to get strengthened / 3 months). The pain suffered from those fractures was debilitating. It’s been great to have my mobility back. I still have chronic pain but it’s not constant and certainly not as rough as before. Walking, reminding myself to sit up, stand straight, doing some of the exercises I learned when going to physical therapy has been a tremendous help, also knowing when it’s time to take a break and lie down for a bit. “Motion is lotion” is a phrase someone shared on this site a while back, and that’s so true…even when I don’t feel like it, I force myself to be active.

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@vmcd
May I ask what you were doing that caused these multiple compression fractures?

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