r/osteoporosis

Hi all, I just had a DEXA scan and found out that I have osteoporosis in my spine (-2.6). I'm 48 and recently finished a chemo regimen for non-hodgkin lymphoma that put me into menopause and contained 6 rounds of high dose steroids (prednisone). The soonest I can get in with an endocrinologist right now is November, though I'm calling daily to try to get seen earlier. My PCP has ordered a lot of different blood and urine tests. So far I know my NTx is -39, my vitamin D is 22, and my ALP has been steadily increasing since I finished chemo, but still in high normal range. I'm just not sure what to do right now. I'm upping my D3 supplementation and planning to start a calcium supplement. My oncologist put in the referral to endocrinology but otherwise seems to be pretty hands off here and said to see my PCP. I'm already doing a weight-lifting program designed to rebuild strength post chemo. I read I should jump around a bit. I walk daily and run a few times a week...help please!

A friend brought up astaxanthin to me recently and it sent me down a rabbit hole trying to compare different brands online. Honestly after looking through Amazon and a bunch of supplement sites, everything started blending together after a while.

Some seem super cheap, others market themselves like luxury wellness brands, and then the dosages are all over the place too.

Anyone here found a brand they’ve actually stayed with for a while and felt worked pretty well?

Does anyone know why a rheumatologist would opt for tymlos instead of prolia for osteoporosis? My wife's GP doesn't understand why I wasn't prescribed prolia instead of tymlos. My rheumatologist claims tymlos was needed rather than prolia because of the amount of bone density I have lost.

He says prolia keeps a person stable while tymlos promote new growth of bones. I don't know if he's just in cahoots with the drug company or he genuinely believes I need it.

Would anyone taking Prolia be willing to discuss their experience with Prolia? Also, how much calcium, and what type, is recommended for people on Prolia?

And, yes, I've read all the potential side effects and the percentages of people who actually experience them. I still like the idea of twice/year injections rather than taking pills - I like the simplicity of it. And I also am aware of the rebound effect if you stop it, so will avoid that.

Hey everyone, today I was prescribed Lopraxer for my anxiety and depression(mild). The instruction mentions a high possibility of bone fractures while taking SSRIs of any type. Has anyone had SSRI-led fractures? Is anyone taking SSRIs with osteopenia/osteoporosis at all? I am not sure how can someone address 2 overlapping conditions without harming oneself?
My doctor doesn’t panic, but I am trying to be proactive and more cautious.

Is it safe for my tymlos pen to go through the scanner? It will be in a refrigerated container.

Chose that title because I suspect this may be a trite topic. But I've distilled it as best I can in case anyone new wants to see it.

I get an x-ray for osteoporosis.  It’s called a DEXA.

 

DEXA indicates osteoporosis, I go on meds and have another DEXA a year later, same clinic, same room.

 

New DEXA shows dramatic improvement, however the numbers look weird.  I ask my doc.

 

Great doc—he agreed the numbers are weird and didn’t know, so he sent me to an osteoporosis specialist.

 

Specialist—after about 20 minutes of confusion, it turned out the clinic I got my DEXA scans at switched to a different machine.  Same make and model, but not the same machine. The tiny serial number on the X-ray images gave it away.

 

Specialist—we don’t know if you improved or not, you can’t compare the results of ANY two DEXA machines. We'll know after your scan next year if they still have this new machine.

 

Me—Wait.  You’re telling me that if I had, say, ten DEXA scans on the same day on ten different machines, even with the same make and model, the results would all be different?

 

Specialist—Yes.  You have to use the same machine to track changes.

 

Me—Then how do I know I even had osteoporosis to begin with?

 

Specialist—Your original DEXA scan showed it.

 

Me—Look.  If you measure the same thing with ten different machines and get ten different numbers, at least nine of them are wrong.  There is no way around this, it’s irrefutable logic.  If ALL DEXA machines are expected to give different results of the same measurement, then they’re all wrong, unless one happens to be right by random chance.  So with that in mind—how do I know I have any bone density issues at all, let alone how mild or severe they are?

 

Specialist— Medical stuff, unclear. (I  wasn’t able to get an answer that made sense to me or that even sounded like it answered the question.  Nobody seems to have an answer that satisfies.  So I am on a powerful medication that can have serious side effects, to treat an illness that was diagnosed with a measurement known to be wrong.  And so is everyone else being treated based on a DEXA scan.  I’m not saying I don’t have bone loss—I’m saying I don’t KNOW if I do, or how much if there is some, and I don’t think anyone else diagnosed by DEXA does, either.)

 

I’m 23 and recently found out I have osteoporosis in my spine and osteopenia in my hip :( I’ve been struggling with anorexia for the past 11 years, and things became especially severe last summer when I was hospitalized and very medically unstable at a BMI of 10.8. Needless to say, I lost my period multiple times throughout those years, with the most recent stretch lasting around four years. My bone problems are most likely related to my ED history and prolonged hypothalamic amenorrhea/low estrogen.

I’m now in a much better place, gained ~24 kg, sitting at a BMI of 19-20. And although my DEXA from a year ago showed low bone density, my TBS/microarchitecture score was slightly above average. A few doctors told me this may be a positive sign because I’m young and my bone structure/quality appears preserved, so with estrogen restoration + nutrition + time, there may be room for improvement. Still, I’m honestly terrified af and worried about what this means long-term. One of my doctors recently started me on low-dose estrogen + progesterone and my period has finally returned for the last three months 🙌

Right now I’m doing the main bone-health basics: resistance training, vitamin D+K2, high protein intake, FORTIBONE, but I’m looking for more recommendations/advice. Certain medication I should discuss with my doctors? Something that helped you? Is there any hope for me?

Thank you so much

I have been taking anitseizure medication for over thirty years. After recently being diagnosed with osteoporosis, I looked up my seizure medications side effects.

Bone loss and osteoporosis is directly related to long-term use. I can not believe my neurologist never said anything. Shouldn't he have known? They do read medical journals to stay current, don't they? This could have been prevented years ago.

Hello. I have severe osteoporosis (T<-5). I want to start swimming. Is there any stroke or movement that is NOT safe in the pool? Thank you.

My mother has severe osteoporosis and was on Fosamax for a few years several years ago. Three years ago she had an atypical femur fracture from the Fosamax. She started seeing a new osteoporosis doctor who put her on Tymlos for two years. She then switched to Fosamax about eight months ago. Her doctor insisted that the Fosamax would not cause additional atypical fractures because they could only happen in the femur and since she already had a femur fracture, it wouldn’t happen again (she had titanium rods put into both femurs at the time of her femur fracture).

Unfortunately, she had a spontaneous rib fracture this week. And she also has a recent healing fracture in her shoulder. She has now had multiple fractures since being on Fosamax. The Fosamax isn’t working. In fact, I think the Fosamax is causing these fractures. But her doctor is insisting that it’s not the Fosamax. He wants her to go back on Tymlos for a year and then switch to Reclast.

Does anybody have insight into this at all? Could Fosamax be the cause of these new fractures? Is Tymlos a good option now? Also, does anybody have a recommendation for a female osteoporosis doctor in the New York City / New Jersey area? I’d appreciate any insight or thoughts.

I've been diagnosed with osteoporosis since 2013 (-2.5) and haven't taken any meds, had a serious fall in 2022 and didn't break anything (with a score of -3.7.) I'm so nervous about starting meds. I'm pretty active, workout 5 days a week, and take calcium, etc. (No HRT) I know there are no guarantees, but is there anyone else out there with these "bad" scores that is doing fine? I don't want to start meds this early in life and be tied to them forever.

My mom is in her early 60s and she has recently been diagnosed with osteoporosis. She also has a compression fracture in her mid spine. She had a DXA scan recently and saw that her osteo has gotten slightly worse. What’s wild is because of her back pain she’s been having, they discovered in a CT scan that she has a tumor on her kidney (thankfully very small and caught early even though she is not having any symptoms of it. She has plans to get it removed). Her other organs like the pancreas, lungs, stomach, local lymph nodes look good. From an xray she had a while ago they discovered she has a compression fracture which is most likely what has been causing her pain. However, she is concerned because apparently most compression fractures heal themselves in 12 weeks or less and she says the pain in that area hasn’t gotten any better and it’s been more than 12 weeks. The pain radiates from the left of her spine to her side/under her ribs. She says the pain isn’t unbearable but just noticeable and sometimes certain movements make it worse. We also think all of this scan anxiety she’s been having is not helping the pain. She’s scheduled to get an mri in about two weeks on her spine and she is concerned about them finding a tumor or something on her spine which is understandable because of her recent kidney tumor diagnosis. Although the tumor is so small it’s very unlikely that it has metastasized. Has anyone had a similar experience with prolonged compression fracture pain?

I'm scared, so very scared. I have an almost complete spinal fusion. T1 to pelvis. My neck now needs fused. A Dexi-scan has revealed that I have osteoporosis. They want me to have Evenity injection s. I have terrible teeth. I have Sjogren's (dry mouth) I'm always having my teeth worked on. I've lost 4 teeth over the years and have 8 crowns and 1 implant! At 62, my gums aren't great. Of course, the dentist says, " Ask your endocrinologist, and the endocrinologist says, see the dentist." No one wants to make the call. I'm not having an extraction, but I'm scheduled to have some of my bottom teeth fixed as they are literally disintegrating. How will the Evenity affect my teeth? I've complained for years that dentures might be so much better. $12,000. I will figure out how to pay for it, but any dentist worth anything won't do it. Is my jaw going to be ok? Has anyone else have dental work while on Evenity? I'm literally shaking. I've chewed the inside of my cheeks raw in anxiety. Now I worry about that, LOL

Went for a quick visit with my Endocrinologist last week. I suffer from severe osteoporosis. So far I have received 6 Evenity injections - so half way through treatment. She plans for
me to have a dexa scan, then begin an infusion every 6 months for a year. What she said next kind of took me aback. I may need to do a second course of Evenity. Has anyone else done this?

Just the title, I'm curious about adding it in, I know there's a certain amount of risk, but I'd say there's a risk with everything. I'm not trying to do competitive road cycling, just riding bikes, maybe on dirt or gravel paths.
I technically have osteoporosis but i'm on my 2nd year of teriparitide and gained 9% bone density in the first year. Currently weightlifting, eating prunes, and getting dietary calcium. editing to add: also on HRT

Took my first (and only dose) of once weekly Fosamax last Friday. Took it exactly as directed immediately upon waking up with a sip of water. Did not eat or drink anything further. Stayed up right for hours afterwards.

By Sunday morning the GI issues started.

I called my rheumatologist Monday and said no more and he's working on authorization for Prolia. I have MS and have had swallowing issues off and on that he was aware of but he kept pushing it. I should have pushed back and refused but after 5 months of appointments and no treatment (kept being seen by the PA who failed to do anything at all) I was just glad to start something.

Symptoms: Intense burning and cramping in my stomach that gets worse when I eat. I've had some heartburn but it's not been nearly as bad as the stomach issues. I've also had nausea off and on and spent a good amount of time gagging in the shower this morning. It seems to be getting worse by the day.

I've tried Tums, Pepto, and finally today Pepcid AC. I've gotten some relief from the burning with the Pepcid but still having intense cramping.

I am going to call his office again tomorrow but wondering if anyone else has reacted this way and if the symptoms stopped eventually without taking any further doses. Any insight is appreciated. I am miserable.

ETA: I have Osteopenia but on the nearly Osteoporosis side. In my early 40s.

Hi, been lurking after my bad dexa results. 60F, pretty fit, 130lb, hot yoga instructor. No fractures or anything but the -5.0 super freaked me out. I have some digestion issues which may have resulted in some malapsortion. After several months and many appointments including my new endocrinologist, i was approved for Evenity. I was excited. First injection in Jan, then got bloodwork and a very urgent after hours call from endocrinologist saying I might be to go to the ER due to critically dangerous low calcium result!!!! (I think around 5or6?) Anyway, I was confused, felt fine. No symptoms of anything so he said I didn't have to go to ER unless symptoms. So he put me on Calcitriol 2x day, .5, since Feb. My levels have only gone up to like 8.6 and he said he wants them at 10 before I go for another injection!! I already paid the $900 copay for the Feb injection, which has been sitting in the fridge. He says he's never seen this. Anyone else have this? How long will it take for the level to be ok!!!???

Edit: i also have hypothyroidism, on synthroid for years.

Had my first Dexa a month ago. Im a 67 year old female. T score for spine was -1, left hip was -2.5. The narrative on the results said medication was recommended. So I get a call from my primary who wanted to discuss. I was going into the appt fully expecting to leave with a prescription. Instead i got a conversation. We discussed the results, along with studies. I am a retired academic, so I was able to read and interpret the studies, including several meta analyses of post menopausal women. While the discussion and results sections reflected great results, the actual data was meh. We decided that because I am healthy and active, i already strength train and understand ​what needs to be done, that we would try the exercise and calcium and vitamin D supplements. In 2 years we will reassess. Frankly, this was one of the first times in my life I've ever had a dr not run to the prescription pad immediately. It was refreshing. So I've started my journey, we will see.