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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Osteoporosis is a silent condition unless you fracture. By feeling better do you mean are the meds effective or are you asking if everyone gets the possible side effects that are listed by the manufacturer? Please clarify. Thanks

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mss713,
fun question
I feel better on Forteo. Some of it is just the confidence of feeling safe enough to move around climbing ladders and using chainsaws. I'm more comfortable and have fewer aches in/with motion. I get a mild energy boost for several hours after taking the injection. And my fingernails no longer split.
I wouldn't say it's a major shift.
I never had any side effects with the medication.
While my dexas haven't been claiming much victory. I'm confident through bone markers that my bones are under reconstruction.
Forteo doesn't work for everyone, though. I was lucky to first choose a medication that agrees with me.
And I'm lucky to have an endocrinologist who recognizes the advantage for me and has me on extended use.
I'm halfway through my fourth year.

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OP drugs remodel bone architecture. You will not "feel better" (more rested, stronger, etc)
by just taking them.

I am taking Tymlos and I "feel better" because after 13 months I found via a DEXA scan that my spine bmd increased by 10.4%. I also "feel better" knowing that with Tymlos I have a

1. 86% relative reduction in new spine fractures.
2. 43% relative reduction in nonvertebral fractures (such as wrists, ribs, and other skeletal sites, excluding things like fingers, toes, and the skull).

See https://www.drugs.com/medical-answers/how-tymlos-increase-bone-density-3581147/

I am a small 100lb female, and, fortunately, have had no side effects on Tymlos.

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"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."

1. The advantages of taking OP drugs FAR outweighs the risk of having a fracture. Look up people who have experienced OP fractures and decide whether you too want to be struggling with life-long pain and disability. Most people do not experience side-effects on these drugs. I have been taking Tymlos for 14 months with NO side-effects. These forums tend to attract a lot more people who do experience side-effects. Those who don't are fine so aren't even aware of these forums.

2. Most people don't use these drugs for a "life-time." At most, they cycle on and off them every few years to avoid some of the side-effects.

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Felt better? I didn’t have any symptoms because to my knowledge there typically aren’t any. Bisphosphonates made my G.E.R.D. worse. I didn’t have much in the way of symptoms on Forteo. Reclast, a bisphosphonate was the worst. Prolia gives me flu like symptoms and a little bone pain for a couple of weeks. Then I’m good. Not sure if this is what you were looking for…

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I was on Reclast for a few years, I have broken so many bones that I had to stop
Fell twice within a year, broke ribs both times, I have not recovered yet, I have decided to just stop, now I have molars that need to be pulled out, I am totally petrified.
I do Not recommend Reclast to anyone…

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Profile picture for jacklin @jacklin

I was on Reclast for a few years, I have broken so many bones that I had to stop
Fell twice within a year, broke ribs both times, I have not recovered yet, I have decided to just stop, now I have molars that need to be pulled out, I am totally petrified.
I do Not recommend Reclast to anyone…

Jump to this post

@jacklin I am so sorry to hear about your situation. I hope you are able to find an endocrinologist who specializes in OP who can treat your condition. Best wishes to you.

REPLY
Profile picture for roseincalifornia @roseincalifornia

OP drugs remodel bone architecture. You will not "feel better" (more rested, stronger, etc)
by just taking them.

I am taking Tymlos and I "feel better" because after 13 months I found via a DEXA scan that my spine bmd increased by 10.4%. I also "feel better" knowing that with Tymlos I have a

1. 86% relative reduction in new spine fractures.
2. 43% relative reduction in nonvertebral fractures (such as wrists, ribs, and other skeletal sites, excluding things like fingers, toes, and the skull).

See https://www.drugs.com/medical-answers/how-tymlos-increase-bone-density-3581147/

I am a small 100lb female, and, fortunately, have had no side effects on Tymlos.

Jump to this post

@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.

REPLY
Profile picture for gently @gently

mss713,
fun question
I feel better on Forteo. Some of it is just the confidence of feeling safe enough to move around climbing ladders and using chainsaws. I'm more comfortable and have fewer aches in/with motion. I get a mild energy boost for several hours after taking the injection. And my fingernails no longer split.
I wouldn't say it's a major shift.
I never had any side effects with the medication.
While my dexas haven't been claiming much victory. I'm confident through bone markers that my bones are under reconstruction.
Forteo doesn't work for everyone, though. I was lucky to first choose a medication that agrees with me.
And I'm lucky to have an endocrinologist who recognizes the advantage for me and has me on extended use.
I'm halfway through my fourth year.

Jump to this post

@gently Do I understand correctly that you're on your 4th year of Forteo?
I wonder whether it's the Forteo that made your fingernails not split anymore, or perhaps the different diet and/or supplements you've been taken after your diagnosis?
I've had splitting fingernails for many years already. I hope Tymlos will help with that. But at 2.5 weeks of starting Tymlos, I guess it's way too early to expect something like that.

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Profile picture for gravity3 @gravity3

Osteoporosis is a silent condition unless you fracture. By feeling better do you mean are the meds effective or are you asking if everyone gets the possible side effects that are listed by the manufacturer? Please clarify. Thanks

Jump to this post

@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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