I'm 60 years old. My DEXA scores worried my PCP. My dentist was also concerned with the bone density in my teeth.
AP Spine L1-L4: T-score: -2.6
Left Femoral Neck:T-score: -2.1
Left Total Hip:T-score: -1.2
My doctor prescribed my Fosomax which I took for about a month until one week where I had really bad acid reflex. I went to a rheumatologist who scheduled me to take the Reclast injection in October. I'm really nervous since this just sounds like such an intense drug. Nobody I know has taken it. I'm considering delaying it for awhile until I feel less uneasy about it but then maybe I'll always feel uneasy about it.
Thoughts?
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l had 2 Reclast infusions as l couldn't take the tablets because of acid reflux,l was also concerned, l went to the dentist lst,it built my bones up a lot,l should have had 3 but my kidney function deteriorated so stopped at 2 annuals,my numbers were similar to yours,l also take calcium and vid D tablets twice a day,good luck
I had a zoledronic acid infusion in November 2021, and yesterday, I had my 1st DEXA since the infusion. When you say that Reclast built up your bones "a lot" can you define a lot--or give your numbers.
My numbers did improve but not as much as I had hoped for.
All three scans were done on the same GE Lunar scanner. Here are my results by year
I found this healthunlocked.com/boneheal... which you posted a few years ago and if _2 means a -2 t-score then that may be where you started. You didn't mention in that post what part of the body that t-score corresponds to and a -2 t-score is only osteopenia. Given that my 1st DEXA in 2019 showed that my lumbar spine t-score was -3.9 I would jump for joy if my t-score was -2
My doctor said he would NOT prescribe Reclast (zoledronic acid) to someone whose boness were in the osteopenia range.
Did your doctor say why they wouldn't recommend it ? My rt hip score is just over the line into osteoporosis. My left hip is osteopenia & my dr is recommending it.
He said it was too serious of a drug. The reason it came up was that, when I started doing research on zoledronic acid (Reclast), I read that people who are prescribed zoledronic acid generally get infusions annually for 2 to 3 years and when prescribed for osteopenia, the infusions are generally every other year. I guess I asked him about it right after my one and only infusion. I was really concerned about the long term side effects partly because of my age—I don’t have any major dental issues but who knows what might happen in the next few decades. It was my endocrinologist’s intention that I have 2 infusions, the 1st in 2021, which I had, and the 2nd, one year later in 2022, which I chose not to get. I told my endocrinologist what I’d read on-line about people with osteopenia getting the infusions every other year, and was asking if I could do that, and his response was that he wouldn’t prescribe zoledronic acid to someone with osteopenia because it was too serious of a drug.
Have you had more than one DEXA or is that your only DEXA scan? Do you have any fragility fractures? Have you had your BTM’s tested?
I know it’s a tough decision, whether or not to take osteo-med, and I don’t know all of your particulars, but I would not have gotten the infusion if just one of my T-scores was slightly osteoporotic. If you scroll up in this thread you can see my 2019, 2021 and 2022 DEXA results. There are no big gains in my T-scores been 2021 and 2022 meaning the zoledronic acid infusion I had in 2021 didn’t do much for me (read through my other posts in this thread for more about that), but that’s not to say others won’t see excellent results if they use zoledronic acid, I just didn’t.
My 2023 DEXA was done on a different GE Lunar scanner (the one I used in 2019, 2021, and 2022 broke LOL so I had to use a different machine). Here are my 2023 DEXA scores.
Total Lumbar Spine -3.8
Left Femoral Neck -2.8
Total Left Femur -3.0
Right Femoral Neck -2.6
Total Right Femur -2.8
Because it’s not the same exact scanner, comparing the numbers is “iffy” but all were done on GE Lunar scanners. I don’t have the full report on me but not all of my vertebrae decreased, however, according to this last DEXA my total lumbar t-score averaged down. Also notice that from 2022 to 2023 my right femoral neck went from -2.9 to -2.6 and my left femoral neck went from -3.1 to -2.8. I have been exercising/weights (leg press over 300 lbs) but increases in the BMD of the femoral neck is surprising because there are no muscles attached to the femoral neck, and what generally stimulates bone growth is when muscles “tug” on bones. My point is that I pretty much feel like my bones are maintaining—there haven’t been significant changes since my first DEXA in 2019 and I’m ok with that. Don’t get me wrong, I’d love to be where you are with t-scores hovering around the -2.5 and better range but at least my BMD doesn’t seem to be worsening.
If you are fracturing, you’re in a different place from me (I don’t have any fragility fractures) and meds might be the right route. If you aren’t fracturing or even if you just want more info before you decide to take meds, consider getting a DEXA w/ TBS (trabecular bone score)—not many imaging centers have TBS capabilities but TBS will give you a better idea of your fracture risk. I don’t have the link on me but if you want to know how to find an imaging center in your state that offers DEXA w/ TBS, let me know and I’ll send the link.
Whatever you do, get BTM tests, especially if you plan to take osteo-meds—you need a baseline so you can re-test BTMs after you start the meds so you can tell if they are working.
Out of curiosity, why didn’t your doctor suggest starting with oral bisphosphonates?
Thank you so much!! I have been reading your posts and appreciate the details! I can't take the oral meds because I have Barrett's esophagus. Also, I've only had one DEXA score taken. I'm 67 & am active & not a high fracture risk. My mom had Osteoporosis & her hip broke at age 85 & she passed. She was an avid walker & rode a stationary bike up until then. I feel like so much of the options in medication are for gathering data & helping folks in the future, which I understand. Results are different for different people & it helps to hear others' journeys. I prefer natural remedies, but am open to taking steps with pharmaceuticals...
You definitely need to avoid the oral bisphosphonates. I took alendronate which caused acid reflux issues and I was then prescribed omeprazole, which I later learned isn't good for your bones. I no longer take either.
The Marodyne LiV (low intensity vibration) platform is a bit pricey but you might be the great candidate for it. I've been debating getting one but I'm waiting a few more months to see what happens with the OsteoBoost Belt, which you sound like the perfect candidate for too. You can go to the company's website at bonehealthtech.com/ and add your name to the notification list.
I learned about the OsteoBoost belt in January 2022. I called my congressperson (LOL) to ask about getting the gov't to give FDA approval to the Marodyne LiV--the science behind it was paid for by tax payers (NASA funded) and without FDA approval, insurance wont' cover it. A member of my congressperson's staff called me back and told me about the OsteoBoost Belt which was/is being fast-tracked by the FDA. At that time, Bone Health Technologies' website showed that they expected to have it ready to go to market by mid-2022. Needless to say, they missed the mark. About a week ago, I got in touch with a company representative and in his reply email he wrote, "The product continues to go through the FDA approval process and we are hoping to have resolution soon with a potential launch middle of this year." Fingers-crossed, it's ready before the end of the year!
Other non-pharmaceutical options you might want to pursue are infrared light therapy and adding NMN to your daily supplements. I haven't done it yet but my plan is to reach out to an orthopedics doctor to see if s/he can point me in the right direction regarding a good infrared mat or device. I recently learned about NMN from a friend and it sound promising nature.com/articles/s41419-... but it's expensive and there is no guarantee that it will work but it might be worth a shot.
Here's the link to find an imaging center with DEXA with TBS capabilities near you.
I've been going over the ancillary data for my DEXAs and I have sooooo many questions that I can't get answered. While trying to find information about my Vertebral Height (L2-L4) T-scores (they don't make sense), I found this link bonehealthandosteoporosis.o...
If you scroll down to the heading "Can DXA Do More Than Measure Bone Density?" they list other things that can be looked at during a DEXA scan. Note, TBS can only be done on DEXA scanners that have the TBS software, most do not. Since the article lists a link to medimaps, for those who want to find an imaging center with DEXA w/ TBS capabilities, and doesn't list links for the other 3 things listed, this makes me think that the other items can be done on most/all DEXA scanners. Number 4 is "Hip structural analysis (HSA) – The size, shape, and configuration of your hip bones can influence the strength of your hip and the likelihood of it breaking. HSA with DXA provides a way to look at this and may sometimes help with treatment decisions." You might want to ask you doctor about ordering that on your next DEXA. The info might help you in terms of what course of action you want to take.
Thank you for those specifics! My endocrinologist wants me on reclast, since insurance won't cover Evenity. I don't want to take it, at least, not yet; I'm 62, almost 63, and my family is very long-lived, 99-104, so I could be looking at decades of drugs...but I could also be looking at decades of pain/debility, even with them, from what I read. So I'm looking for real world numbers/improvement.
I just had my first DEXA post-diagnosis. I didn't get such specific info on each vertebrae, just know my total spine score went from -4.6 to -3.9--a very big improvement, as I see it. (No comments from healthcare providers yet.) My hip also improved but not as much (not as much room for improvement either: -3 3, -3.5 to -3.1, -3.4.) I did take about 9 doses of Fosamax, split, some in late spring, another round in late summer (just so doctors would see me as "compliant". ) Otherwise this is just changing diet, supplements and continuing to exercise even if it hurts.
Based on your results, I did just as well on the natural method as you did on Reclast, if not better.
Regarding your comment, that you “did just as well on the natural method as” I “did on Reclast,” LOL and ugh.
When I was 1st diagnosed, my endocrinologist told me my bones were “horrible” and pushed me toward osteoporosis meds and when I asked about drug-free alternatives he was had nothing to offer, so at his urging, I took the meds.
Unfortunately, it wasn’t until after 1.5 yrs on alendronate and 1 dose of zoledronic acid that I started doing my own research.
Based on my research, I feel pretty confident that my endocrinologist should never have prescribed bisphosphonates for me. He ordered a 2nd zoledronic acid infusion for me in November 2022, one year after the 1st infusion, and I chose not to have it.
Bisphosphonates work by slowing resorption. The best way to know if you have high bone turnover is to do BTM (bone turnover marker) labs prior to prescribing osteo-meds. My endocrinologist failed to order these tests. Additionally, although he was treating my hypothyroidism before I was diagnosed with osteoporosis, he failed to factor my hypothyroidism into the equation.
Many ppl think that only hyperthyroidism affects BMD but hypothyroidism can hurt your bones too. Hyperthyroidism tends to increase bone turnover (resorption) but hypothyroidism slows bone formation. Ultimately both hyper and hypothyroidism can lead to reduced BMD.
Bisphosphonates aren’t the solution if one’s problem is with bone formation and can actually make matters worse because that class of drugs not only reduces resorption but they also infer w/ or reduce osteoblasts.
On 11-18-22, one yr to the day of my one and only zoledronic acid infusion, I had BTM labs done at my request. My BTM results showed that my bone turnover is not elevated. Given that bisphosphonates stay in your system for a long time, there is no way for me to know if the zoledronic acid wasn’t affecting my BTMs; however, during the last week of December 2023, I had my BTMs tested again and they are still not even remotely elevated.
I have zero respect for my endocrinologist at this point and I’ve tried several times to “dump” him but, since I haven’t found another doctor yet, I have to continue to use him so I can get my thyroid labs ordered and my levothyroxine prescribed. On a positive note, today I scheduled an appt with a new primary care physician—I wrote on the notes for the appt that I want to discuss my hypothyroidism. I’m hoping she’ll agree to treat it.
So, long story short, the bisphosphonates probably didn’t work for me because my bone turnover probably wasn’t elevated when my endocrinologist put me on bisphosphonates.
Regarding your question about whether or not I adjusted my diet and exercise, yes. In January 2022, I joined a gym as soon as I was ready to go back into the wild “post-epidemic”. Just had my 2 yr gym anniversary. I’m 4’11” weigh 108 lbs and today at the gym, I leg pressed 350 lbs (I definitely didn’t start there).
Like many ppl with hypothyroidism, I’m gluten sensitive, so I’ve been gluten-free since before my osteoporosis diagnosis. Since my diagnosis, I’ve added vitamin K (K1 and K2), I pretty much quit soft drinks, I limit my caffeine intake, I’ve added magnesium citrate, and upped my protein in take, and I’ve changed how I get my calcium (smaller doses via diet throughout the day and supplements right before bed—studies show post menopausal women who get calcium before bed have lower PTH in the morning), additionally, I always make sure to get some calcium in before exercising.
Thank you for all that info! I can't remember if I mentioned I have Hashimotos...but thanks especially for THAT info. I had googled thyroid and osteoporosis and what I learned was thyroid effects almost everything, way more than I knew/than anyone had hinted at. I have had lots of tests now but not one bone marker test, which--based on YouTube doctors, etc. seemed really dumb. You actually explained it better than anyone I'd heard, though; put the pieces together better. Bottom line, if you're correct, is--as I suspected--if I were to take drugs, bisphophonates probably aren't the best choice. They MIGHT, if I understand correctly, reduce fracture risk by kind of artificially building up bone density, but would not address the problem, and would likely massively increase fracture risk if I stopped them, or took them for too long?
Wow, 350 pounds, at 4'11" and 108 pounds yourself? I'm impressed. Now, I did just read that leg press doesn't have the same impact on bones as squats do, but it's still impressive! I definitely am not close to that yet, still just excited to be able to hold 20 pounds and do squats without "pinging" my back, but I'll get better...I will!
I hope you'll keep me posted as you continue to try to find solutions/doctors. Thanks again!
When my endocrinologist prescribed bisphosphonates for me, he said that he thought bisphosphonates were "safer" than other options because they have been around longer and there is more data on the potential long term side effects. However, I have since learned, through my own research, that taking bisphosphonates prior to taking anabolics, reduces the effectiveness of the anabolics.
Source: ncbi.nlm.nih.gov/pmc/articl... The summary states, "the fundamental observations that in patients for whom more than one drug will be required over an extended period, the greatest gains in bone mass can be achieved with the initial use of an anabolic agent followed by an antiresorptive drug whereas the initial use of a bisphosphonate may diminish the efficacy of subsequent anabolic therapy."
Again, NOT happy with my endocrinologist. My "hope" is that by the time that I might need to take EVENITY or another anabolic, so many years will have pasted, that the bisphosphonates will be completely out of my system. I don't have any fractures and I'm not planning to take any osteoporosis meds in the near future. I will continue to exercise and eat a bone healthy diet and take supplements etc. and I will have annual DEXAs and monitor my BTMs and if need be, I will re-evaluate my situation and consider osteo-meds.
You mentioned that you are 62 and that your insurance won't cover Evenity. I'm 55 and my insurance won't cover it either. My insurance did cover part of the one zoledronic acid infusion I had but only after I met my out of pocket max, which, that year, was $1200.
My aunt, who is now in her early 80s, took alendronate for 5 years and, then, because you aren't supposed to take oral bisphosphonates longer than five years, her doctor took her off the alendronate and prescribed Prolia. Being a senior citizen, she is on Medicare and she does have supplemental insurance. Something went awry when her doctor prescribed the Prolia, because she got a call from her pharmacy saying the medication was ready to be picked up. When she showed up at the counter, she was told the cost was around $10,000 and then the pharmacist said that there had been a mistake, that she couldn't pick up a Prolia prescription, that she would have to go to an infusion center to have it administered. She made an appt with the infusion center and got the Prolia and it cost her ZERO because it was considered an infusion and not a prescription (or some strange technicality like that). With my aunt's current supplemental medicare insurance (United Healthcare AARP supplemental plan) had she been prescribed a zoledronic acid infusion, she wouldn't have had to pay out of pocket for it either, meaning her insurance would have covered 100% of the cost.
Evenity is administered by a doctor, so there is a chance that it would be covered by United Healthcare AARP supplemental plan. You said you are 62 and your profile shows you are in the U.S. so I'm guessing you might be going on medicare in a couple of years. If this is the case, research the medicare supplemental plans to find one that will cover EVENITY. Even though I have 10 yrs until I'll be on medicare, I've already planned to focus on that when the time comes. Also, you probably have a few friends that are already on medicare so ask them if EVENITY would be covered my their supplemental plans.
Additionally, I used to work for a pharmacy. With some drugs, if your insurance doesn't cover the Rx and the costs are too high, there are programs to help patients afford the meds. You could ask your doctor if s/he knows of a discount program for Evenity. Also take a look at this link evenity.com/paying-for-evenitycheck out all three tabs: MEDICARE, COMMERCIAL INSURANCE, UNINSURED (scroll down about 1/2 way to see what I am referring to).
I'm not pushing for you to take EVENITY. I just wanted you to be aware of the options.
Hi again, Wow, you have digested and kept track of a lot of information!
Re: my limited experience trying to procure Evenity, supposedly I did get preauthorized for it, and had qualified fie several discounts (at least to me,) so the cost would've been under $200 a month.
I too had read (here/folks on forums, not from my doctor,) that you wanted to take anabolics first. That was why I was surprised my endo's next choice was Reclast.
Yes, I did catch on to the fact that being too young is problematic. I see a lot of people over 65 who are like, "They wouldn't let you get an MRI? I've had several!" "Well, I have private insurance, and apparently I need to not be able to walk before they'll refer me for advanced imaging " "Ohh."
No fractures for you, eh? How did you get diagnosed? Seriously, I think my care providers were not going to consider...anything...as long as my legs worked. We asked, more accurately, my husband asked, for a DEXA for me. And even after getting the results, the folks at the Intel Health center seemed perfectly happy to prescribe Fosamax over the phone with no discussion whatsoever. I mean, in a weird way, I wonder if I didn't kind of purposefully...allow myself to be more damaged...to get them to take this seriously? That sounds bad, doesn't it? But my new PCP literally said to me--and I didn't see him until I had the x-ray proving fractures--that he just couldn't understand why I was taking this so seriously. After my one visit with him and a subsequent online survey, he has been a bit better, but it's like I have to coach him. "Don't you think measuring people with osteoporosis makes sense at every visit? Do you realize I've lost an inch and a half since my last appointment, barely a year ago? That's three inches total. Do you think maybe that much compression could affect me?" "Yes, you're right, we SHOULD do that, it's just faster not to, and yes, you're going to FEEL that." They work under many constraints, I know, but still, it's going to cost somebody a lot more if I do end up...breaking a hip, or femur, or can't walk for some other reason. Breaking my wrist was spendy--I got reinforcement for it--but insurance didn't quibble about paying for surgery. (And still, not one person hinted that this was a fragility fracture and maybe I should get my bone density checked.)
So in that regard, I guess I'm lucky the 90% natural route did something. I'd way rather not have a "relationship" with a bunch of specialists (none of whom agree with each other anyway.)
I'm not sure medicare will ultimately be much better, but my current plan is to hang in there until I can get it. I have a follow-up scheduled with the endo, and I'm interested in his thoughts, but after this visit, I don't know. A friend has a doctor, traditionally trained, who opted out--he's the outside the insurance industry guy who focuses on nutrition, etc. Of course he'll be spendy but I'd like to consult with him anyway, and I have bern paying a naturopath this last year, so I've broken that ice. She's nice but relies a bit too much on "what my body is telling her it wants" for her prescriptions. We'll see.
Just for right now, I feel like I can breathe, and I am going to enjoy it while I can.
My doctor ordered recast for my osteoporosis which I've had for 10 years. My scores are worse than yours. I have never taken meds for it. Like you, I have concerns with meds/reclast. I decided to do more research and not have the recast infusion at the moment. Instead, I am working with my diet, have taken therapy to learn how to strengthen my spine and back muscles, learn proper body mechanics etc. to avoid fracturing. To date, I have never broken a bone and am a very active person. I am uncertain if all I am doing will prevent worse scores but will decide what to do if and when I fracture. Regardless of whatever you do, don't rush into treatment until you feel it's right for you and you are comfortable with your decision. Good luck, as I know it is scary and unsettling to make that decision.
I only took the Foamax for a month due to problems swallowing the pill and reflux. My doctor wanted me to have Prolia infusions. I agree it is very scary. I am 62 and my T scorces are a little worse then you indicating osteoporosis. There are alot of people that do well on Reclast and Prolia. I don't like all the side effects that you can have. If you have some issues with the drug and have to stop, do you feel crummy for awhile. Once you start these meds, you have to take something for the rest of your life. If you don't, you are at higher risk for fracture. My mom and aunts never had a fracture. I decided not to take the meds now. I started taking Vitamin K2 100 mcg daily to help with bone mineralization a month ago. I have started walking more, 4-6 miles, and resistance training. I know some people take Algacal. It is a calcium supplement from red algae that is supposed have better bone absorbtion than the calcium from rock. I can't take this due to thyroid issues. My insurance will cover another bone scan in 2 years. I will reaccess the med issue again if bones worse. Good luck to you. Let us know if you start Reclast and how you are doing.
Insurance will cover annual DEXAs if you are being treated for osteoporosis and I don't think being treated for osteoporosis means that you have to be taking meds. I think it just means that you have to have osteoporosis and get a doctor to code the DEXA referral correctly You should at least ask about it. Two years is a long time to wait for you next results. Also you might ask about BTM (bone turnover marker) testing. s3.amazonaws.com/Food4Healt...
I'm sorry, I am also shocked that you've been told you need a bone medication. Your worst T-score is indeed in the "osteoporosis" category. The others.... Unfortunately our doctors are not trained to know that in many, if not most, cases of bone thinning there are ways to improve bone density without the use of medication.
Risk of fracture is based on several factors, which include (as well as the t-score) age, medications you may be on which are known to affect bone density, and whether you've had a previous "fragility" fracture - that is a spontaneous fracture, not one caused by trauma. Many people even with some form of most of those factors still only have a small risk of fracture. To put it into perspective, if your risk to fracture is reckoned to be 10% in the next ten years, then you have a 90% chance of not experiencing a fracture. You can see it's all a bit of guesswork.
I hope your doctor also investigated you for "secondary causes of osteoporosis".
Have a look at these links. One is my story, which may contain some useful tips for you, and the other links to a description of the secondary causes which need to be ruled out before bone medications are prescribed. My main suggestions for you, whether you continue with bone medication or not, are to add Vitamin K2 (not K1) to your supplements, and to make sure you get appropriate bone-strengthening exercise (can be as simple as a daily walk, perhaps carrying a bit of weight). By the way, if you look up Vitamin K2 on the internet many of the items are from dental clinics. Dentists know the value of Vitamin K2.
I was extremely nervous about having infusion with Reclast. I cancelled twice but finally after my rheumatologist reassured me I had it done and it was a piece of cake! No side effects whatsoever. Just be sure to hydrate with LOTS of water the day before and day of pricedure and day after too. I’m so glad I did it! I hope this helps as I had so much anxiety all for nothing.
I just Reclast two days ago, with a couple of nasty side effects for a couple of days, but I was told to take 1,000 mg of both vitamin d and calcium for the next two weeks.
I was so afraid of doing Reclast infusion myself and kept procrastinating. My rheumatologist convinced me to do it and I’m very happy I finally did. I had no side effects whatsoever. It was a cinch! Just make sure you hydrate the day before, day of and day after, and you should be fine. I’m so glad I did it! Now just two more every year and I’m done! I know of others who had it done and are just as happy they did. Good luck to you!
You’re welcome. I’m on Forteo for 1 more year, then move onto Reclast for 2 years to lock in the gains. I’ve read a lot about both meds. Good luck on gaining bone density.
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