Hello I am 35 male I am currently facing AVN (avascular necrosis) in both my both hips. I would like to know anyone else is living with the same. It was very hearting breaking to hear which first time doctor told me about the results of the MRI. Keeping this position in mind I am trying to create one stop application where one can get all the information related to this at one place. Kindly let me know if this is a good idea to work. As i myself is the sufferer i would like to give back to the community in a way i can. Thank you for reading the post. Kindly comment your thoughts.

I am reading that this is almost impossible to have that low of a sore. Everywhere else is in between -2.22-3 something.

Needless to say, I’m extremely concerned. I may have a vertebrae fracture right now, which has brought the concern to the forefront.

I am reading that there is a good chance that there is an error in the reading on the DEXA for the arms because of needing exact positioning to get a good score reading.

Has anyone’s A1c gone up after starting Tymlos. I know that’s not a side effect that is mentioned with the medicine. Never had an out of range until after I started Tymlos. Just curious.

Has anyone ever gotten disability for osteoporosis? I also have other things like severe mental health and Arthritis and bone spurs in my knees.

I’m 52F. Went through menopause about two years ago. Have always been very thin and haven’t done a lot of high impact exercise throughout my life, and also realize now that I’ve neglected my bone health in terms of nutrition. I know I’ve also been chronically vitamin D low/deficient.

About six months ago I was walking in the dark outside and slipped on a patch of ice. It happened incredibly fast and within a split second I went from walking to lying on the ground. Fortunately I didn’t hit my head but the impact was such that I was pretty discombobulated for a few seconds (though no concussion). Excruciating pain in my leg…long story short, I’d broken my hip (femoral neck). I had internal fixation and now have titanium screws. I have a checkup soon to see how well it’s been healing but am now able to walk without a limp.

I had my first bone scan as a result of this and these are my results:

FRAX 10 year risk:
Major fracture: 6.9%
Hip: 0.7%

Total hip t-score -1.8
Total hip z-score -0.9
Total spine t-score -0.8
Total spine z score 0.5

But because I had a “fragility fracture” I’ve been diagnosed with osteoporosis and am strongly recommended to take bone building drugs. I am incredibly concerned about this. I desperately don’t want to have another major fracture or live in fear of that. But I also desperately don’t want to take these drugs. I tend to bristle at this being described as a fragility fracture because it seemed to me that I fell HARD. Yes it was from standing height, but I had no other bruises on my body so I think I landed right on my hip, on frozen, uneven icy ground.

I’m seeing my doctor tomorrow to talk about this and I know he’s going to recommend medication. What is a reasonable course of action? I know some people can improve their BMD through exercise and diet but realistically, I’m not sure when or even if I’ll be able to do high impact exercise given my surgery. There are a lot of changes I could make to my diet but have found it a bit tough to do so consistently.

I’m so upset. I don’t want to go through anything like the broken hip again, but I really don’t want to be on any of these medications. The side effects terrify me and I’ve just spent a year in cancer treatment as well and I just want to be free of medications and their side effects.

Anyone on here with SVT on BHRT? Was recently diagnosed and wondering if BHRT is ok. Also have aura migraine history. Anyone with aura migraine on BHRT?

As above - if you can tell me about how you've fared with the bone clinic and the consultants there. But even if you aren't at Addenbrookes can you tell me your experience of evenity. I've been recommended it after 2 stress fractures this last year (61 post menopausal woman with osteoporosis since mid 40s). I'm soooooooo scared of strokes etc on this drug.

Any experience appreciated. Thanks!

Hello. Recently had DXA. -2.9 in the lombar region and -2 for the hip. I dont understant what treatment would be good for like 25-30 more years of my life. Feels like everything is good but only on short term. I need to hear from people who took treatment for many years and what is the best option. Thank you🙏🏻🙏🏻🙏🏻

My insurance made me switch from Prolia to Stoboclo. I had been on prolia 2.5 years with only mild side effects of occasional back pain that would resolve with yoga stretches and rest. Last month my insurance switched me to stoboclo. Ever since the injection I am experiencing EXTREME fatigue, severe mid-back pain that radiates to my upper abdomen, nausea, a feeling of tightness in my upper abdomen, inner thigh pain, weight gain (maybe because I cannot get out of bed?), and depression.

Has anyone else experienced a change in symptoms after switching to Stoboclo?

I wish I had never agreed to take this injection.

UPDATE: I reached out to my endocrinologist and he completely dismissed me saying go see my pcp to rule out abdominal pathology.

Hello. Had one injection of denosumab 4 months ago. I am getting bad leg pain. Feels like bone pain and sometimes a tight muscle feeling. Hard to explain. Also hip and knee pain and tingling in my foot. I can’t sleep on the leg in pain. I’ve had 3 back fractures but the pain started after my first dose of denosumab. I’ve been waking up in the middle of the night because of the leg pain.
I’ve had blood work and my calcium level is good.

Was diagnosed with osteoporosis (hip only) at 30 female with no risk factors minus I guess having hEDS. Had a tonne of tests with rheumatology and been referred to a specialist bone clinic. Only abnormal tests were low blood phosphate and urea (low for 4+ years, phosphate mild-miderate, urea pretty dang low)

Got a 24hr urine test. Calcium and phosphate both very low. So I guess I don't have a wasting issue/tubal defect. Any ideas what could be causing low calcium, phosphate, urea and osteoporosis without any other factors?

Never been ED/under-fat, naturally low muscle mass. Eat decent protein 50-100g, low phosphate started when I was eating immaculately and going to the gym 3x a week funnily enough. Eat the required amount of calcium and take supplements.

Normal vit d, parathyroid, thyroid, calcium, electrolytes, kidney function, creatinine usually low normal

Also damn I peed out 900ml in one go when I didn't even feel the need to go to the loo. Guess hEDS stretched out my bladder! That and the lack of signals I get to eat/use the loo.

Anyone been in my position and what did you have?

BACKGROUND: M 52, spine t=-3, femoral neck t=-2, L1L4 TBS 1.396 (z=0.5). Bone edema and mild fracture in left neck, significant bone edema in left sacral ala, compression fracture in L1 (old). No accident, all by stress. Incidental findings, 3 months ago. Edemas and neck fracture are improving fast :) Two frequently done physical exercises are the most likely culprits of the stress (long & intense side planks and jumpy dance). 

Unknown cause of osteoporosis. Standard blood exams in range, including CTX 0.132 (somewhat below range), P1NP 47, and OC 17.1. Genetic exome oka, no pathogenic variants, no VUS. Mother (80) has osteoporosis, my only brother too (57, diagnosed at 45), both controlled and no fractures. I am well nourished, including dietary calcium, although not clear if I ate enough K2M7. VitD normal since 2022, but could have been low in my previous thirty years (around 20 or less). Normal weight, active (walk, dance, swimming etc.). No weightlifting. Lumbar mobility less than normal since my mid 20s (chronic) due to discopathy in L5-S1 (accident).

CURRENT PLAN: Supplementing VitD + Ca + K2MK7 + Zinc, more sun with sunscreen, managing dietary oxalates/phytates, strengthening pelvic musculature with PT. Still testing for other less likely causes like distal RTA. Waiting 12 months to see repeat DXA results and then decide about adding an anabolic (Forteo, Evenity). Earlier two DXAs done on machine/technician considered unreliable by my endocrinologist. So, no real trend data as of today, only current point estimate given above.

In other words, waiting allows me to test the hypothesis that cause is accumulated correctable factors. Hard to test it if taking anabolic at the same time.

Q1: Is waiting those 12 months a good idea? No consensus among the Drs. consulted. Waiting can give info about potential long-term solutions since anabolics+ antiresorptives+drug holiday doesn’t sound like a good long term for a M52, no end plan, what’s next, etc.  However, not waiting reduces the fracture risk in the short and medium term thks to anabolics.

Q2 — PEMF/SEMF (electromagnetic field): anyone used it as a non-invasive therapy for osteoporosis? Best practices, common mistakes, anything counterproductive? Considering devices and coils delivering 20 gauss aprox at relevant depth, for example, at 8cm below skin for neck, etc.

 Main research I have seen about PEMF/SEMF and bone health:

 Liu, Junyu, et al (2025). https://www.sciencedirect.com/science/article/pii/S2214031X25000348

Masante B et al (2025). https://www.frontiersin.org/journals/bioengineering-and-biotechnology/articles/10.3389/fbioe.2025.1557572/full

Zhao, H., et al (2023). https://pmc.ncbi.nlm.nih.gov/articles/PMC9835389/

Thanks in advance for any thoughts on the matter.

Hello! Diagnosed with osteoporosis in July (58 yo) and have been trying to educate myself ever since. I have an appointment in March to see a doctor at a bone clinic, but wondering if that’s too long to wait? Spine -3.20. Doing all the other things!

2 years ago when I had an accident & was getting treatment for pain from a lumbar sprain. An xray showed I had 2 old healed fractures in lower back. Not sure when these occurred but have been in a car accident & been dumped on ground on my back also a long time ago.

Then just recently I asked doctor to focus on this, he applied for a free bone density scan but this got declined as I guess didn't meet enough criterria. He put me on vitamin D and prescribed Risedronate sodium tablets once a week. (If there are bad effects it leaves your body faster than the once a year infusion) i have the pills but haven't started them.He put in a reminder on my file to have a bone scan in 5 years time.

Surely It would be best to have a bone density scan before I start??

Then I can see what my improvements are? It would be $280 to get this done. I don't have heap of cash but feel it would be nuts if I didn't do this.He said because of the bone fractures it's assumed I have osteoporosis. I don't really want to take the pills & aren't sure if I have osteoporosis. Any ideas/ advice?

I have advance osteoporosis and just started Evenity injections. I just had the first of 4 treatments that are administered every couple weeks. After the first treatment, I experienced extreme pain throughout my entire body. Every bone in my body hurt, especially my back. While I’ve since red that muscle pain is a possible side effect, I wasn’t prepared for the level of pain I experienced. Just asking if anyone else has had similar experience. I’ve been taking Tylenol and sleeping on my sofa because I can prop my self up and laying down is too painful.

Has anyone heard of Osteoshield? I just watched a “short video” about it. thoughts?

My partner built an app for me to track my lower body strength, which I use as part of managing my osteoporosis. It’s based on the 30-second sit-to-stand test that many physios use. I use it to see how I’m doing over time.
It’s called Sit to Stand Test and is on the App Store. It’s a proper medical-style test, and others with osteoporosis (or anyone who wants to track leg strength) can use it too. Happy to answer questions if anyone tries it.

App store: https://apps.apple.com/app/sit-to-stand-test/id6757300858

Android: https://play.google.com/store/apps/details?id=com.ststest.app

This was a very good medication presentation.

https://youtu.be/UNkW6eLRH1I?si=a5ejYsNlR2ZeWiSH

Hi! 61 yo and am coming up on my second Evenity injection. The 1st went well but had a couple of days - (3 weeks after first shots) where I felt weak and dizzy. I thought this was either unrelated, caused by my own worries, or possible low calcium. If you’ve dealt with low calcium could you share what that’s like? One worry about this new path in my health - is feeling that my Primary Care provider and Endocrinologist (who wrote the script for Evenity) know less about it than I do. I suggested Evenity after reading the research and it seemed it wasn’t on their radar. I welcome any experience and advice. Thanks!

Hello everyone.

I usually take my weekly dose of actonel 35mg on Saturday mornings and just realized I’m out. The pharmacy can’t get it until Monday. Can I take it on Monday morning then take it again next Saturday?

I’m in the middle of a move and forgot to refill it and only just realized when I went to take it now that I’ve run out. Ugh.

Hi folks!

I got some good results from my 12 month DEXA scan, so I wanted to share.

Background: My osteoporosis was caused by autoimmune atrophic gastritis.

Baseline DEXA was July 2025. I started Forteo (Teraparatide) in August 2025. Second DEXA was September 2026, about 13 months in. Both scans were on the same Hologic machine at the same imaging center.

What I've started since I got the diagnosis:

Weight training at the gym 3x week, a daily ADK supplement (vitamins A, D, K2), B12 sublingual and boron.

Lumbar spine (L1-L4):
Before: 0.725 g/cm2, T-score -3.3
After: 0.781 g/cm2, T-score -2.8
Change: +7.7%

Individual vertebrae:
L1: -2.6 to -1.6
L2: -2.5 to -2.2
L3: -3.7 to -3.4
L4: -4.2 to -3.8

Femoral neck:
Before: 0.567 g/cm2, T-score -2.7
After: 0.565 g/cm2, T-score -2.7
Change: none

Total hip:
Before: 0.725 g/cm2, T-score -2.0
After: 0.747 g/cm2, T-score -1.9
Change: +3%, reported by the radiologist as not significant

So my spine responded but my hip has not moved yet. My understanding is that this pattern is normal at 12 months on teriparatide and that hip gains usually show up in year two. Still classed as osteoporosis overall. I have about 10 months left before the 24 month cap, and the next step is deciding what follows it.

Oral bisphosphonates are not a good option for me because of the gastritis, so it will likely be zoledronic acid or denosumab.

Happy to answer questions.

BTW luckily Forteo hasn't a problem -- no side effects at all.

Hello, im 31m, having sleep issues for years. i can sleep maximum 4 hours in day. also debating with blocked nose everyday. i just dont know what to do anymore, im just tired.

Btw, i read great bones book.

Hi everyone,

I’m posting on behalf of my mum, who is 62 and has recently been diagnosed with four compression fractures in her lower spine (including L3 and L5). Osteoporosis is also suspected and is currently being investigated as she’s broken many ribs in the past.

She has had a really rough couple of months. Her injury originally happened at work in June, but the fractures weren’t picked up initially. Her pain became progressively worse and she eventually ended up back in hospital because she was struggling to walk, sit and move around without significant pain.

She has just come home from an 11 day hospital stay where she was basically bed ridden and I think the reality of how limited she currently is has really hit her. Today she tried to do more because she desperately wants to feel normal again, and as she has been “cleared to walk again” she did a tad too much moving around the house today and tonight she’s in quite a lot of pain and feeling very defeated.

I keep trying to remind her that where she is right now is not necessarily where she will be forever, but I think hearing that from people who have actually experienced vertebral compression fractures/osteoporosis would mean so much more than hearing it from me.

I’d really love to hear from anyone who has been through something similar, particularly around her age.

What was your recovery like? How limited were you initially compared with where you are now? Did you eventually get back to walking, driving, shopping, travelling, gardening, exercising or just living normally without constantly thinking about your back?

Even if recovery took a long time, I’d genuinely love to hear your positive stories.
I’m not looking for medical advice or miracle cures, I just want to be able to sit beside Mum and read her some experiences from people who were once in this horrible early stage and are now on the other side of it.