r/osteoporosis

Hi everyone,

I’m posting about my mother, 63, who has severe multifactorial osteoporosis. We are already trying to get a specialist opinion, but I’d be grateful to hear experiences from people who had similar T-scores / secondary osteoporosis and had to decide between medications.

Background:

• Osteoporosis already documented in 2015: spine T-score around -3.1, femoral neck -3.3, total hip -3.1
• 2025 DXA: lumbar spine L2-L4 -4.2, left femoral neck -3.7
• Apparent worsening between 2022 and 2025, although scans were not done on the exact same machine: spine L2-L4 roughly -3.8 → -4.2, femoral neck -3.3 → -3.7
• No hip or vertebral fracture documented so far, but she had a metacarpal fracture in 2015 after a hand trauma
• Contributing factors: Crohn’s disease with intestinal resection in 1985, past primary hyperparathyroidism with imaging compatible with a left parathyroid adenoma, later operated, menopause around 50 without HRT

Her rheumatologist proposed Aclasta / zoledronic acid, but my mother is very worried about osteonecrosis of the jaw and other potential side effects (cancer long term, etc.). She was then prescribed Actonel / risedronate, but she is also hesitant to start it. Her fears are not “anti-medicine”; she just wants to understand the risk/benefit properly before committing.

1. Has anyone here had T-scores in the -3.5 to -4.5 range and improved or stabilized significantly?
2. For people with severe osteoporosis, what made you choose zoledronic acid, risedronate/alendronate, Prolia, anabolic drugs, or another option? What was your experience with side effects?
3. More importantly... is this the only solution? Are there treatments that are not as aggressive? The doctors are saying she needs to remove all her teeth before starting. It sounds awful.
4. Are there any supplements / lifestyle interventions that genuinely moved the needle for you? Could it be worth it to give my mother strong doses of vit D/K, boron, etc.?

I know Reddit is not medical advice, and we will discuss everything with doctors. I’m mainly looking for real-world experiences.

Thank you.

I am 40, a female. I have had osteopenia diagnosed since postpartum. All of my blood tests including thyroid-related tests have been normal. The only thing that indicates that I have osteopenia is my annual DEXA scan and calcium in urine. I have been diagnosed with IBS lately, I am gluten and lactose intolerant as well, so taking meds is a tricky game for me. The endocrinologists in my country are not that informed on osteopenia at young age to say the least. I have seen at least 3 endocrinologists, none of them told me what to do with losing calcium through urine. What do your local doctors say to do or take?

-2.7 in lumbar spine, -2.1 in femoral neck and total hip.

I'm going to be starting alendronate 1x per week.

I'm 61 and female. Up until a year and a half ago, I lifted weights and used an exercise bike 3-4x per week for about 9 years. Can one lose bone density that fast?

None of my doctors ever wanted to start me on HRT. So what's done is done. How fast can alendronate get my bone density back up? I guess I'll have to be on something for life? Or can certain exercises help me keep the density up once it's back to a certain point?

I had have had 5 scans in the past 13 years. The last one was a week ago. All the previous reports had comparisons to the one before it. Last week's did not have a comparison. It said:

"Please note that no comparison is made to prior BMDs which were done on the Radiology densitometer, because formal comparisons cannot be done across different machines. If it is clinically important to know if there has been a significant change in bone density compared with prior measurements, patient can schedule a follow-up BMD in Radiology. From now on though, patient may follow BMD measurements on our Boston since we now have a new baseline on our Boston densitometer."

My previous scans say there were done on a GE Lunar Prodigy Advance machine. It seems like this would be a problem since I have been taking fosamax and want to see if it is helping. Am I missing something? PS: Have an appt with my endocrinologist is a couple of weeks and will check with her, too.

just heard about this product today it’s a collagen peptide powder with fortibone mixed in. apparently it’s helpful for osteoporosis/osteopenia saying it: increases bone density, stimulates bone metabolism and reduces bone loss. i was thinking of adding it to my daily vitamins, currently taking calcium, vitamin D3 and magnesium glycinate. also getting yearly reclast infusions. is this fortibone supplement beneficial at all or is it one of those health powder fads?

Im 62 and have osteoporosis in my hip and am curious and confused about supplements and absorption .

How much D3 is necessary( mine is low) and how much calcium and what is the best way to absorption? Do I need to take k2?

This is not about pharma drugs that’s another topic.

I keep getting denials for not being postmenopausal or a male. Laughable I know! Anyone experience this? My endocrinologist has prescribed both Forteo and Tymlos so far and both have been denied.

Hello beautiful people

Am 29 male recently diagnosted with osteoporosis due to long time living without testesterone

I had this tumor in my head before puberty and caused my testesterone almost 0 for a décade

Recently i start on healing plan and

I have spin of -4.3

Also for my legs it's -2.5

My vitamine D is 8 ng per ml

My t is only 2ng per ml the range is 3 to 8

Am on testesterone injection every 20 days

And next month ill have my first zombeta injection at hospital

I need all what u did as protocoles or food or anything to heal

Thank y all

My endocrinologist is changing me from Prolia to Jubbonti. I've received injections of Prolia for several years. Has anyone made the switch? If so were the side effects or lack of them the same as with Prolia?

Thanks for your comments.

I just got squeezed really hard by a kid should I be worried? I'm in a lot of pain in my ribs

I just got diagnosed with osteoporosis by my primary care physician after doing a BMD which was recommended by said PCP as I am chronically underweight with upper GI issues. I also underwent a series of blood work (e.g. TSH, Free Thyroxine, electrolytes (Ca, K, Na, Mg), Vitamin D3). Blood work was normal except for TSH which is slightly elevated (subclinical hypothyroidism), and D3 level of 29 ug/L (which based on the reference range used by the clinic's lab, is only borderline insufficient). The PCP assured me that it is possible to improve the bone density by managing my weight (increase caloric intake), doing resistant/strength exercises, and taking medications. But the medications (e.g. Fosamax and its related class of medication) may cause rare side effects such as jaw necrosis, and I felt more anxious after hearing that. I was prescribed with some calcium and Vitamin D3 supplements, and the PCP referred me to see an endocrinologist to rule out any other conditions that could also contribute to the osteoporosis, as well as a dietician to manage the weight issue.

Anyway, I was quite devastated upon hearing that I have osteoporosis. I was so upset that I didn't ask the PCP how bad the osteoporosis was. Til now, I am still processing all these emotions and information. I felt that I was given a punch in the gut, and wondered whether I have a chance of recovery as I read that peak bone mass is reached at around 30, and that I have missed out my window for recovery. Furthermore, I have a small appetite and struggled with chronic indigestion, which makes taking increased caloric intake a challenge.

So yeah.... I am feeling pretty scared and helpless, and I am not sure what kind of challenges lie ahead.

Hi everyone, sharing my case here - hopefully it helps someone out there feel less lonely with this disease. Or helps me find other people in a similar situation.

I'm a 37 Male - After a few months of going to the gym and dieting, I did a Dexa scan to see if I was gaining muscle & losing fat... turned out surprise! I have osteoporosis 🤣 (-3.0 Z-Score in Spine). Needless to say - this was a shock. Never felt healthier in my life (just lost 20 pounds of fat) and been exercising religiously for 6 months. Haven't had any fractures in the last 12 years.

My doctor was initially skeptical, made me do another Dexa, which confirmed my Osteoporosis. She then made me do a ton of tests, virtually all of them came back normal, incl. Total T, Free T, PTH, Cortisol, HIV, TSH, Calcium in blood, Calcium in Urine, Vit D, Electrophoresis, Metabolic panel, blood count, auto-immune diseases, lupus, CTX, etc... My Celiac came back negative too.. but i'll need to do it again as i haven't been eating much gluten lately.

Only two things came back not good: high P1NP and high SHGB.
=> Interestingly, my P1NP is high (188) but my CTX is normal (204) 🤯. May be I had an undiagnosed painless fracture?
=> My Total T is very high (borderline too high) but my Free T is on the lower side of normal. That's explained by high SGHB. But unclear if this is due to my strict diet in deficit.

Still waiting on results for Estradiol.

Right now, this whole thing is still a bit of a mystery - I am still working out 5 days a week, lifting heavy incl. deadlifts etc. I'm getting a little bit paranoid - everytime i have some minor pain or discomfort, I wonder if it's a fracture or something. It's been tough from a mental stress perspective.

My PCP doctor said once we get the last results, she'll recommend me to a specialist endoctrinologist to investigate more as she doesn't see any obvious cause.

Good luck to everyone out there! Will keep you posted as/if I learn more.

Wondering what time of day you all do your injection, and do you Always do it at that time? I’m likely going on 2 years of Tymlos next and I’m concerned about how I will be able to stick with doing the shots consistently. The thought is doing it as part of my morning rush/prep for work time leads me to think doing it after work/before dinner each day may be my best bet.

I'm an almost 79 y. o. guy who, it was found in early 2023 at the VA, has hyperparathyroidism which causes me to lose calcium from bones: probably only 1 of the 4 small parathyroid glands went haywire in my neck (they're behind the thyroid gland) some time in the past. In the past (while living with hyperparathyroidism), I was told I'm in the osteopenia category but this past Fri. a senior VA endocrinologist told me that since a vertebral fracture shows up in radiographic studies and occurred some unknown time in the past, I'm clearly in the osteoporosis category. She offered me alendronate last year and again this past Friday and I told her I'd take it AFTER seeing my dentist for inspection and evaluation of all my teeth: I see him on 13 May. A friend (who's not an MD nor in health care) told me today his late wife had taken alendronate and that this drug has a good deal of controversy swirling around it. Using DDG, I read the AI account of the controversy and am now not so sure I want to take the drug. I read about some alternative drugs. Do all of these alternatives carry the same physical/medical risks or is, maybe, one of them low risk and useful to those having osteoporosis? [My calcium levels are always slightly above the upper limit for normal blood calcium. This past Friday, my calcium level was 10.8 with 10.4 being the upper limit for normal. My vit D level was 38 which the MD said is OK.] While I walk rather fast and far, I wonder if use of light/lighter weights is useful in a case of osteoporosis. Tell me what you know about this aspect. Thanks

Talk to my doctors about it?? I've crawled into multiple doctors. In agony that hydrocodone didn't touch. and not one mentioned alendronate until a dental clinic. Thank GOD I'd misplaced my Rx of that poison for a few weeks, and 'cured' myself. Choose your life. I'm 68, don't plan to die in mind bending pain.

For more than 15 years I took omeprazole. Due to my recent osteoporosis diagnosis I managed to quit and take 1 tbsp Gaviscon Advance alginate before going to bed instead (and Pepcid once in a while during flare ups of heartburn). I'm having an increase in blood pressure lately and wonder if the salt in the alginate might be causing it?

I just had my 6th Evenity injection and when going to bed I experienced loud heartbeat and dizziness and probably high blood pressure (was too messed up to measure my blood pressure). However this incident stopped after 90 minutes. I still have 6 more months with Evenity and don't want to quit and to lose my gains... Other than this incident I had no problems with Evenity. I plan to place the injections into the thighs next month instead into the stomach, maybe that will prevent such a future incident.

So I wonder - as my BP has been a increased lately if it might be the salt in the alginate...

Hi there, I am on day 4 of Forteo injections, after each plunge I've noticed there is a little bit of medication dripping from the needle. Am I doing it wrong? It says to count to 5 slowly and I'm doubling that.

Has anyone found any safe Osteoporosis drugs? They all sound terrifying. I have Barrett’s Esophagus .

This comes up a lot with individuals who are on osteoporosis medications like alendronate (Fosamax), risedronate (Actonel), ibandronate (Boniva), or zoledronic acid (Reclast) — providers sometimes talk about a “drug holiday”, and staff/families think the medication was discontinued by mistake.

It’s actually often intentional.

What Is a Drug Holiday?

A drug holiday is when a provider intentionally stops an osteoporosis medication for a period of time after several years of treatment, then may restart later.

This is most common with bisphosphonates because these medications stay in the bone for years even after stopping them.

So the medication keeps working even when it’s not being taken.

Common Bisphosphonates

These are the meds most associated with drug holidays:

• Alendronate (Fosamax)
• Risedronate (Actonel)
• Ibandronate (Boniva)
• Zoledronic acid (Reclast)

Denosumab (Prolia) is different — it usually should NOT be stopped suddenly without a plan.

Why Do Drug Holidays Happen?

Bisphosphonates are effective, but long-term use has been associated with rare side effects like:

• Osteonecrosis of the jaw (ONJ)
• Atypical femur fractures
• Over-suppression of bone turnover
• Esophageal irritation (oral meds)

Because the medication stays in bone for a long time, providers sometimes:

• Treat for several years
• Stop medication for a period
• Monitor bone density
• Restart later if needed

Typical Timeline (General Idea)

This varies by provider and patient risk, but commonly:

Medication	Typical Treatment Before Holiday
Alendronate	5 years
Risedronate	5 years
Ibandronate	3–5 years
Zoledronic acid	3 years

After that, provider may consider:

• Drug holiday
• Continue therapy if high fracture risk
• Switch medications
• Repeat DEXA scan
• Monitor bone density

Who Might Continue Without a Drug Holiday?

People at high fracture risk may stay on therapy longer:

• History of fractures
• Very low bone density
• Chronic steroid use
• Wheelchair bound
• High fall risk
• Advanced age
• Severe osteoporosis
• Neuromuscular disorders
• Long-term seizure medications
• Non-ambulatory individuals

This is very relevant in the IDD population.

Monitoring During a Drug Holiday

During a drug holiday, providers often monitor:

• DEXA scans
• Calcium
• Vitamin D
• Fractures
• Height loss
• Back pain (possible compression fractures)
• Mobility changes
• Falls
• Bone pain

If bone density worsens or fractures occur, medication may be restarted.

Important Nursing / IDD Considerations

In IDD populations, many individuals have high osteoporosis risk due to:

• Anticonvulsants
• Limited mobility
• Wheelchair use
• Low vitamin D
• Poor nutrition
• Tube feeding
• Long-term steroids
• Low body weight
• Down syndrome
• Cerebral palsy
• Hypogonadism
• Thyroid disorders

So sometimes providers do NOT give drug holidays in these populations because fracture risk is high.

Very Important Note About Prolia (Denosumab)

Prolia is NOT a bisphosphonate and should not be stopped without a plan.

Stopping Prolia suddenly can lead to:

• Rapid bone loss
• Rebound vertebral fractures
• Multiple spinal fractures

If Prolia is stopped, providers often:

• Transition to a bisphosphonate
• Monitor closely

This is very important and often misunderstood.

Quick Summary

Drug holidays are usually considered for:

• Alendronate
• Risedronate
• Ibandronate
• Zoledronic acid

Usually after:

• 3–5 years of therapy

Not usually for:

• Prolia (denosumab)
• High fracture risk patients

Monitoring includes:

• DEXA scans
• Vitamin D
• Calcium
• Fractures
• Falls
• Height loss
• Back pain

IDD Nursing Tip

If you see:

• Osteoporosis medication stopped after years
• No new medication started
• Provider note mentions “drug holiday”

It may be intentional, not an error — but it’s always good to confirm.

Also important to track:

• Last DEXA scan
• Vitamin D levels
• Calcium intake
• Fall risk
• Mobility changes
• Fractures
• Dental issues (ONJ risk)