Scared by latest DEXA showing severe osteoporosis. Need advice.

Posted by ripley @ripley, Apr 28 4:22pm

I'm a 73 year old woman diagnosed with osteoporosis in 2017. (I am petite, 5’2” and 112 lbs and have heard that may affect DEXA score accuracy.) Since 2017, my DEXA’s every 2 years stayed quite consistent. However, my latest DEXA shows a significant decrease in BMD, and it scares me.

2024 Total Hip: -2.7 (2021 -2.4, 2019 -2.3, 2017 -2.2)
2024 Femoral Neck: -3.0 (2021 -2.5, 2019 -2.7, 2017 -2.4)
2024 Lumbar Spine: -3.9 (2021 -3.2, 2019 - 3.3, 2017 -3.2)

I've never broken or fractured a bone. I take calcium, vitamin D and collagen peptide supplements every day, but have never been on any prescribed drugs for osteoporosis and especially would like to avoid bisphosphonates. I know my endocrinologist will pressure me to take something. At my last visit, he suggested Reclast. The many side effects of this drug concern me, especially lasting bone and muscle pain. I have fibromyalgia, so already have daily body pain, sometimes severe, so I worry about increased pain from a new drug and/or a fibro flare.

I think two reasons for my recent low DEXA scores is that two years ago I was diagnosed with fibromyalgia, which has limited my physical activity, and I started taking a daily PPI. I have tried to wean myself off the PPI, without success, but will try again. Also, for many years I've had a thyroid condition and have taken Synthroid.

Will I have to take some kind medication for my bones? I would appreciate any advice. I see my endocrinologist in two days.

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

@ripley, yours is the million dollar question. The low lumbar spine number indicates that bone building meds are in order (Evenity, Tymlos, Forteo --- or generic Tereparatide). Taking meds is not an easy decision, and the thing is --- you don't want to fracture. Others who know a lot more than I will weigh in. This is my two cents and probably exactly what it's worth. Wishing for the best for you.

REPLY

It looks like your spine hasn't been great for awhile, and had a recent drop that is significant. I think most of us would tell you that a bone builder would be best (Tymos, Forteo, Evenity). Reclast, Fosamax and Prolia are anti-resorptives, which means they increase density by lowering bone turnover, not by building new bone the way the other three do. I hope you can discuss this with your doctor.

Insurance companies like doctors to prescribe an anti-resorptive first (they are cheaper) but with low DEXA scores and/or fractures, your doctor can try to authorize a bone-builder.

You might want to read up on options (McCormick's "Great Bones" is one I like) or watch some videos (I like Ben Leder MD's video on Combinations and Sequencing on YouTube).

crossposted with @babs10 !

REPLY

Oh, Ripley welcome.
You are way ahead of the game. No reclast.
And now you've landed in a goldmine of information.
You might ask your doctor for bone markers--CTX and P1NP. They are great for determining if a medication is working. You'd want orders for before medication and after the first month.
I would ask for Forteo as a starting medication. My second choice would be Tymlos. With your numbers you should be offered an anabolic. That is a medication that builds bone instead of one that just collects old bone.
Luckily these two medications can be extremely effective.
If you medical provider isn't an endocrinologist or rheumatologist ( I suspect they aren't because they are suggesting a bisphosphonate an antiresorptive) you may have a more difficult time getting the blood work for bone markers.
I'm your same age. Always eating the best foods and taking calcium vitamin K vitamin D +. Physically active to the extreme.
We did lose estrogen. The only way we can be blamed is in the very beginning when we didn't snag a Y gene from our Dads. If we had though we'd be worrying about prostate cancer.
I've been on Forteo for a year. My bone markers look good. I won't have dxa proof until August. But you should see my fingernails, especially amazing considering my garden.
I haven't had any negative side effects. And do have more advice.
This is a seriously great group with lots of experience.

REPLY
@windyshores

It looks like your spine hasn't been great for awhile, and had a recent drop that is significant. I think most of us would tell you that a bone builder would be best (Tymos, Forteo, Evenity). Reclast, Fosamax and Prolia are anti-resorptives, which means they increase density by lowering bone turnover, not by building new bone the way the other three do. I hope you can discuss this with your doctor.

Insurance companies like doctors to prescribe an anti-resorptive first (they are cheaper) but with low DEXA scores and/or fractures, your doctor can try to authorize a bone-builder.

You might want to read up on options (McCormick's "Great Bones" is one I like) or watch some videos (I like Ben Leder MD's video on Combinations and Sequencing on YouTube).

crossposted with @babs10 !

Jump to this post

I read you can only be on the bone-building drugs for 2 years and then you have to go on an anti-resorptive like a Bisphosphonate. Is that true? Do you have an opinion on which bone building drugs might be best, and do you know how effective they really are at improving DEXA scores and preventing fractures? I'd really like to avoid taking any drugs, do you think I don't have that option? Thank you so much.

REPLY
@gently

Oh, Ripley welcome.
You are way ahead of the game. No reclast.
And now you've landed in a goldmine of information.
You might ask your doctor for bone markers--CTX and P1NP. They are great for determining if a medication is working. You'd want orders for before medication and after the first month.
I would ask for Forteo as a starting medication. My second choice would be Tymlos. With your numbers you should be offered an anabolic. That is a medication that builds bone instead of one that just collects old bone.
Luckily these two medications can be extremely effective.
If you medical provider isn't an endocrinologist or rheumatologist ( I suspect they aren't because they are suggesting a bisphosphonate an antiresorptive) you may have a more difficult time getting the blood work for bone markers.
I'm your same age. Always eating the best foods and taking calcium vitamin K vitamin D +. Physically active to the extreme.
We did lose estrogen. The only way we can be blamed is in the very beginning when we didn't snag a Y gene from our Dads. If we had though we'd be worrying about prostate cancer.
I've been on Forteo for a year. My bone markers look good. I won't have dxa proof until August. But you should see my fingernails, especially amazing considering my garden.
I haven't had any negative side effects. And do have more advice.
This is a seriously great group with lots of experience.

Jump to this post

Actually, my Dr who prescribed Reclast is an endocrinologist. I don't know why he's suggesting Reclast before bone building drugs. One bone builder, Tymlos I think, allows for adjustable doses -- do you know if that's correct?
What made you chose Forteo? Is that the only osteoporosis drug you've taken so far? And really no side effects? How long does your Dr want you to take it and has he suggested another med as a follow-up? Thanks so much.

REPLY

ripley,
I wanted an anabolic because it builds bone, instead of preserving older bone. In building bone it remodels our bone according to our activities acually realigning the spicules for the best flexibility and resistence to fracture.

The bisphosphonates prevent remodeling, by accretion give you ischemic bone, weaker bone that is unable to repair itself, and blunt the effect of anabolics if taken first.

This left me with three choices: Forteo, Tymlos or Evenity.
Evenity begins as an anabolic then continues as a an antiresorptive. It is a newer drug with black box warnings about cardiac issues. It is a monoclonal antibody which blocks the sclerostin pathway. The effects of the the blockage of this pathway will be born by the bodies of souls brave enough to take those risks. I'll wait, realizing that the number one cause of death in the US is cardiac event.
Tymlos is a close choice and is thought to have slightly better bmd results. It can be given in adjustable doses. Our impeccable source of information and experience here is windyshores. (She invented the system of gradual dosing.) She'll be around any minute to tell you the other side of the story. I depend on her.
I chose Forteo over Tymlos because the prescribed dose is lower. Forteo 20mcg Tymlos 80mcg. And windyshores hadn't invented or hadn't revealed her clever method. And because Forteo has been around maybe 20 years longer with a great effectiveness record.
Some people have side effect with one , other or both Tymlos and Forteo. But the are eliminated from your system within 24 hours, so you aren't stuck with adverse effect the way you are with Reclast and Evenity.
The usual course with both drugs is two years.
Suggestions among the endocrinologist advising me are 1 year Forteo followed by Reclast, with resumption of Forteo 2 years Forteo followed by one year alendronate and resumption of Forteo. 2 years Forteo 1 year Reclast 2 years Forteo. No one advised Reclast first, Prolia ever or Evenity before real life trials.
Forteo lowers blood pressue in the first seconds after the injection. In some people it can cause headache or dizziness. I was careful in the beginning because my bp is already low. I took blood pressure measurement and sure enough my systolic dropped from 100 to 80, but I never felt it. No headache, no loss of balance. I've had no side effects, except my nails which I keep short are hard to clip.

REPLY
@ripley

I read you can only be on the bone-building drugs for 2 years and then you have to go on an anti-resorptive like a Bisphosphonate. Is that true? Do you have an opinion on which bone building drugs might be best, and do you know how effective they really are at improving DEXA scores and preventing fractures? I'd really like to avoid taking any drugs, do you think I don't have that option? Thank you so much.

Jump to this post

It is hard to answer generally because we all seem to tolerate different drugs differently. For me, Tymlos was a godsend, because I am sensitive to meds and could adjust the dose (and ramp up slowly). The half life of Tymlos and Forteo is one hour so they are gone very quickly. Many doctors seem to be going to Evenity first but I also felt nervous about it two years ago. I have now done 4 months of Evenity (the time when it is most potent for bone growth) and will now go to a low dose Reclast in two months (with IV hydration and slow infusion).

If your DEXA scores are just over the line of -2.5, you may be able to try holistic methods, and it is even possible that Fosamax could help if you will never need bone builders. At a certain age, Prolia is a possibility too because the main issue with that is getting off, but you can do it for 10 years. My doctors don't use it at all. I personally would never take it.

Forteo can now be taken more than two years and I assume Tymlos will follow. I am not sure the doses can be compared: it may be a case of apples and oranges since they work a little differently. We need to check that!

Tymlos greatly improved my bones. Spine improved 20% and went from severe to borderline. I have 7 spinal fractures (some from trauma, some from osteoporosis) and didn;t have a choice. I don't know if you have a choice or not.

REPLY

@ripley sorry to hear that your Dexa made an unwanted turn. This reminds us who have osteoporosis even osteopenia to have a biannual, better yet annual Dexa scan diligently.

The jury has spoken without hesitation. Hope you and your endo will make a great decision based on the particular case of yours and the abundance of proven results from large randomized clinical trials.

REPLY
@gently

ripley,
I wanted an anabolic because it builds bone, instead of preserving older bone. In building bone it remodels our bone according to our activities acually realigning the spicules for the best flexibility and resistence to fracture.

The bisphosphonates prevent remodeling, by accretion give you ischemic bone, weaker bone that is unable to repair itself, and blunt the effect of anabolics if taken first.

This left me with three choices: Forteo, Tymlos or Evenity.
Evenity begins as an anabolic then continues as a an antiresorptive. It is a newer drug with black box warnings about cardiac issues. It is a monoclonal antibody which blocks the sclerostin pathway. The effects of the the blockage of this pathway will be born by the bodies of souls brave enough to take those risks. I'll wait, realizing that the number one cause of death in the US is cardiac event.
Tymlos is a close choice and is thought to have slightly better bmd results. It can be given in adjustable doses. Our impeccable source of information and experience here is windyshores. (She invented the system of gradual dosing.) She'll be around any minute to tell you the other side of the story. I depend on her.
I chose Forteo over Tymlos because the prescribed dose is lower. Forteo 20mcg Tymlos 80mcg. And windyshores hadn't invented or hadn't revealed her clever method. And because Forteo has been around maybe 20 years longer with a great effectiveness record.
Some people have side effect with one , other or both Tymlos and Forteo. But the are eliminated from your system within 24 hours, so you aren't stuck with adverse effect the way you are with Reclast and Evenity.
The usual course with both drugs is two years.
Suggestions among the endocrinologist advising me are 1 year Forteo followed by Reclast, with resumption of Forteo 2 years Forteo followed by one year alendronate and resumption of Forteo. 2 years Forteo 1 year Reclast 2 years Forteo. No one advised Reclast first, Prolia ever or Evenity before real life trials.
Forteo lowers blood pressue in the first seconds after the injection. In some people it can cause headache or dizziness. I was careful in the beginning because my bp is already low. I took blood pressure measurement and sure enough my systolic dropped from 100 to 80, but I never felt it. No headache, no loss of balance. I've had no side effects, except my nails which I keep short are hard to clip.

Jump to this post

W😲W @gently!

When I saw your careful timed btm testings couple weeks ago, I knew there must be a mastermind(s??) behind all that orchestration.

The many different regimen options! Hey thanks a lot, I might copycat the scheme with a twist.

ps, please tell me the brilliant mind/s also predicted this can go on and on, in theory. That will the light at the end of tunnel for me

REPLY

I am 71 years old and have just completed my second Reclast infusion. I was diagnosed 4 years ago with osteopenia after a stress fracture and was advised to consider taking a drug. After researching I chose to not take any and see how it goes. Well, my DEXA scan numbers got worse so it was recommended I try Evenity; this drug did not work for me with its side effects. I am now doing Reclast and have had no bad side effects other than some minor flu like symptoms after the first infusion. They only lasted a couple of hours. Lots of water and Tylenol really helped. Each person is different so I wish you luck with your choice.

REPLY
Please sign in or register to post a reply.