r/osteoporosis

Is it too late for me to start on HRT at my age?

I'm not much of a writer, and a pretty private person not used to sharing any personal information. But I'm leaving this here to hopefully give back to the community and maybe someone would find this useful in some small way.

I (M) got diagnosed with osteoporosis at 39, on a routine health screening, where I accidentally selected a wrong screening option. lumbar spine -2.4, and left femoral neck, hip, forearm all around -0.7. Compared to many, this is relatively minor (I guess), but somehow I had a bad emotional reaction and felt terribly worried and helpless. Luckily I came across this sub, and silently read through the various posts, which gave me an idea of what resources to use, what others have done, and this helped mentally knowing that many have had similar experiences, and there's a way forward.

The endocrinologist didn't want to put me on meds at this age (luckily). She out me through a battery of blood tests, 24h urine test, and apparently nothing was out of normal, except for having Vit D on the lower end of normal. I was then asked to be careful not to fall, don't do impact sports, come back if I experience any back aches or fractures. See you in a year's time. Having read this forum, I asked about LIFTMOR and whether I should consider it. She had not heard of it, and said that weight bearing exercises could help although it'll be a risk. My GP had not heard of LIFTMOR either, and had a similar response. I visited a second endocrinologist, and he also had not heard of LIFTMOR, and mentioned that with scores like this, it's too risky to be doing these lifts.

I'm built small (155cm/54kg) and never had a fracture. I also hated just sitting on my hands, knowing that's a sure fire way for nothing to change. I visited a physiotherapist hoping to get some guidance on LIFTMOR, but again, not familiar with the protocol, and it was deemed too risky.

Anyway I decided that since I have not experienced a fracture before, I'd just give it a go, and play on the safe side of things - lift what I feel very comfortable with, no pushing to the limits, and only with good posture. I started with 20kg deadlifts, 10kg squats, 2kg overhead press. I only added weights when I complete 3 sets of 10, and feel like I have much more in the tank. That way, I built up to 65kg deadlifts, 25kg squats, 17kg overhead press. I did these exercises 2-3 times a week. Aimed to drink more milk, eat clean, sleep better.

After about 8 months of exercise, my scans have improved somewhat- -2.1 lumbar spine, and 0.0 for everything else. Although still in the osteoporosis range, I'm heartened that things are improving. In my heart I hope that this trend continues. I've no idea why the lumbar spine doesn't respond as well as the other parts of the body, seemed that it should be the other way round.

Anyway, what I've learnt is that doctors may mean well, but they don't know everything, and many just follow a playbook to treat this illness. Don't be too disheartened, advocate for myself, ask doctors more questions, and read up. Push myself physically, but listen to my body on what I can take, and err on the safe side. Take care nutritionally and in sleep too.

I know this is a "special" case, no specific root cause, and I luckily happened to respond to some exercise. I hope everyone is able to work through this in their own way, and hopefully see some progress too.

Sorry for the long rambles.

My 86-yo mother died last week within 24 hours of getting her first ever Reclast infusion. Has anyone heard of such a result that related to Reclast?

She had no medical conditions except for high blood pressure, which was under control with medication. Her primary care doctor is puzzled —- this is not the doctor who initiated the Reclast infusion.

Certainly, it could be coincidence, but this was so sudden and shocking, I have to ask these questions

What should I expect? The dr gave me zero prep besides not taking calcium supplements or medication 24hr beforehand. I’m only 26, and my dr wanted me to get one because I broke my pelvis last December, and have had two fractures both in my hip since then (from falling since I have epilepsy). The ortho doctor who did my hip replacement surgery suggested I have osteopenia. For reference, I’m 5’2 and severely underweight (I’m not posting numbers) and yes I do have an eating disorder.

Recently diagnosed in April with osteoporosis. 49 F, menopause at 47, 94 pounds 5’6” BMI around 15. Have been this size all my life, well normally closer to 105 but lost weight last year somehow. Dr ran all the calcium, PTH and celiac tests and all were fine. Pretty sure it’s due to my size. Started HRT last fall.

Lumbar was t -1.3. Left neck was -2-2 and right was -2.8.

She decided to try Tymlos but insurance denied twice as I do not have any bone breaks. They also said to try another med first so we tried Boniva for 2 months and had side effects from it.

When I went back to see her she suggested Prolia until I asked about rebound. Her next suggestion was Reclast so she has started working on the PA for it. She also asked if I wanted to try anything else. I had hoped to try Tymlos first as that was her first suggestion but she was not interested in doing a peer to peer to get it approved. I just want to take the right meds in the right order.

Is Reclast my best option at this point?

Sharing my experience. I'm a 54yo woman with mild osteoporosis. No other health problems. The infusion went fine, they did it over 15 minutes. I asked if they could do it longer and they said they calculate the duration based off of kidney health and because my kidneys were healthy 15 minutes is the recommended duration. I got it done in the morning and felt fine all day. I made sure to drink a lot of water the day before it in the morning of and I took some Advil before I left the house. I also took some Tylenol right before the infusion because I know it's safe to take both on an alternate schedule. I woke up in the middle of the night with bodyaches and a migraine. The next day, I felt like I had the full-blown flu with bodyaches, a slight fever and fatigue. My stomach was also upset. it took me the better part of the weekend to feel back to normal.

Has anyone in the USA had insurance successfully cover MRI imaging of the spine who had normal X-rays first?

Premenopausal woman here with osteoporosis of unknown origin at this point (thorough secondary cause workup showed nothing so far and awaiting results of genetic test). (Please don’t tell me to eat healthy and lift heavy weights or to get xyz test as I do and have done!)

I’ve been using a few different AIs to guide me through my osteoporosis while I wait for my appointment with a top bone health clinic. The various AIs have consistently recommended I get MRI imaging of my spine given my severe T scores and severe back pain through recent pregnancies and postpartum. Also my fracture history of ribs and tail bone (4 fractures). I already did X-rays and they didn’t show anything, as predicted, as they miss a large portion of non-displacement fractures and do not pick up on other important issues. Insurance is still denying it.

I plan to use AI to help me craft an appeal based on medical protocol. There’s a good chance my primary care doc didn’t use the right language or mention the right things in requesting the pre-authorization, as she is not that knowledgeable about pre-menopausal osteoporosis.

I've heard of the Kaari program and that sounds great, but would love to hear if anyone has been through it and what their experience was like, or if there are any other programs that we should look into?

I guess I'm not just looking for general exercise programs that are "technically" safe for osteoporosis, but any programs that are actually focused on osteoporosis itself, since I'm learning though all my reading that exercise can help improve bone density?

Thanks in advance!

Male in late 60’s, 135#, 5’8” in good health, walk 3-5 miles daily, resistance training 2-3x week, swimmer.  Dexa scan results were a surprise. T-Scores: spine -2.8, left femur neck -3.0, right femur neck -2.3, left femur total -2.3, right femur total -2.2, dual femur -2.3. No fractures.

 

Lab results, just received, of interest: CTX 367, P1NP 64.8, P1np/CTX ratio of 176 (above 150 or “anabolic”).  Calcium in blood is normal at 17.6 but 24-hour urine calcium is slightly elevated at 341 mg.  Also, 24-hour urine volume was 3.25 L which is high. Vitamin D is on the low end of normal at 33 ng/mL.  No celiac disease.  

 

Will be discussing results and next steps with my GP very soon.  His preliminary recommendation was an anabolic, likely generic forteo which should be covered by my PDP with approval.  One question I have is that it seems odd that my bone turnover markers indicate I am growing bone but still have a -3.0 dexa result.  Also, curious about the higher urine calcium and what that may mean.  

I often see foam rollers recommended for tight hamstrings and calves. I have also seen cautions about seniors or people with severe osteoporosis using them. I am in both categories. Anyone have experience to share? I'm assuming I'd be getting a soft or medium density roller and using it only on my legs, not back or neck. Thanks for any feedback!

63F. Diagnosed osteoporosis 2 years ago, T-score -2.8 in my spine. I've been doing calcium, D3, K2, magnesium and weight-bearing exercise faithfully, and my last scan came back worse, not better.

I'm not looking for a miracle and I'm skeptical of the "reverse it naturally" posts. I watched my own mother go from a hip fracture to a nursing home she never came home from, so I'm just trying to understand what's actually realistic. My doctor wants me on Prolia and I'm scared of it and scared of doing nothing, so I'm stuck.

Some of the improvement stories here seem too good to be true, and I don't know if that's because the people who do well just don't post as much.

For those whose numbers actually held or improved: looking at your life right now, what are you doing that you were afraid you'd lose? Have you had a fall and been okay? Are you still doing the things you got scared of, stairs, gardening, getting down on the floor with grandkids? And honestly, what did a good scan actually feel like when you finally got one?

Thanks in advance.

50 yo F diagnosed with osteoporosis 2 years ago. History of thyroid cancer with a total thyroidectomy in 2014. I would appreciate any feedback on my Evenity results. This is after 10 months of injections. I also did about 2 months of Tymlos prior to Evenity but couldn't tolerate the dizziness. I'm pretty disappointed in the results. I did go from osteoporosis to osteopenia in my spine. I'm not sure if I want to finish the last 2 months of injections. The main side effects I've had are increased headaches, some bone pain, site reactions, and a rash (pretreating for this now). I'm also taking 1200 mg calcium, 2000 iu vitamin d, vitamin k, prunes, and added weight lifting.

08/2024 T-score R femur neck -3.1, L femur neck -3.1, R hip -2.7, L hip -3.1, AP L1-L4 2.9

08/2024 Z-score R femur neck -2.4, L femur neck -2.5, R hip -2.3, L hip -2.7, AP L1-L4 2.2

08/2026 T-score R femur neck -2.8, L femur neck -3.0, R hip -2.7, L hip -2.9, AP L1-L4 2.0

08/2026 Z-score R femur neck -2.1, L femur neck -2.2, R hip -2.2, L hip -2.4, AP L1-L4 1.3

(tw mention of ed but kept very vague!!)

Hi all, looking to see if there’s anyone who’s been in a similar situation to me. I’ll try to keep this as short as possible. I’m 23F, average weight, moderately to highly active, strength training and running a few times a week as well as walking. I’ve always had pretty strong bones and never broke a bone (knock on wood), but lost my period a bit over a year and a half ago (seemingly due to HA/physical and mental stress), so I figured I would get a scan while I continue to try to get it back. I had to beg my doctors for it because they didn’t believe it would be a problem. I have had an eating disorder in the past (primarily age 16-18) so I knew the risk of osteopenia/osteoporisis was something that definitely could be a possibility since I hadn’t had a period in a bit. I was treated extensively and recovered in most senses, but of course have had some bouts of some undereating from stress or disordered thoughts, which I have worked through in therapy and I don’t consider to be a full relapse in any shape of the matter. I also had been dealing with back pain in my lower spine but have never really thought much of it, since I have an hour commute to my work place and sit for a long period of time in the car i’ve always chalked it up to that (still don’t know if it’s related though).
Unfortunately, my results came back: L1-L4: Z score -2.5 (bordering on osteoporosis), femoral neck Z score -1.8, and total hip pretty normal- -0.1. My doctors and I have discussed getting some more labs done since it’s been a bit, to see if my cycle is any closer to returning, but in the meantime I’m tryin to see if there is anything I can do. I’m honestly devastated and just looking for some advice from anyone who might have been in a similar boat. This was my biggest fear for years and I guess i just hoped it would never happen. I’m scared that even if I do restore my cycle, this will be something that affects me for the rest of my life. Has anyone been through something like this and been able to reverse the effects? Thank you :)

Well folks the insurance has denied evenity for me 2 times so we tried tymlos and I just got the email they denied the pre authorization on it aswell. My dexa was -3.7 on average and lowest was -4.4 at l3 so kinda lost now I’ve got a combined total of 13 deformities in my spine from this. But it’s not “medically necessary” don’t know how they got that but oh well guess I’ll fuckin get crippled from some more bad sneezes or coughing to hard like the last 2 vcf I ended up with. Been nice folks.

For those who are currently on Fosamax or have been will you please your experience with symptoms?

I just wanted to share a positive experience my friends have had doing Reclast. I’m going to be getting my first infusion in the next few weeks. They both experienced minimal side effects (one had mild flu-like achiness for a day or so and the other nothing). One of them had a 5% improvement (which I guess is average?) and the other , after her second infusion, had a 15% improvement ! I don’t know her numbers, but that’s impressive ! She does the Vitamin D and K2, but told her endo she hates calcium pills so was told OK to do Tums, which is what she has been doing. She also works on heel drops and jumping . Anyone else have more than the average improvement on their DEXAs?? 😊

After 3 months on Forteo my calcium level has increased from 9.6 to 10.6. What have others done when this occurs?

I was on prolia for eleven years for severe osteoporosis. My scores started out at -4.1 T score spine and -2.2 T score hip in 2014 at age 42 when I was first prescribed Prolia. I was recovering from anorexia nervosa and already in surgical menopause since age 33 but on HRT estradiol patch full dose. I really don't know why doctors chose Prolia over Reclast infusion, but that is what I started with in 2014. I suspect they were worried about my kidneys due to the eating disorder (I am fully weight restored and recovered by now) and Reclast can be hard on that. I did very well with Prolia, no side effects, and it raised my scores to -2.0 spine and -.8 hip by 2024 and they were very stable. In February of this year I was due for my Prolia shot when my insurance suddenly decided I didn't need it anymore due to my higher scores and the length of time I was on it. So they denied coverage, despite my doctor appealing twice and my high risk factors for rebound effect coming off (being on Prolia long term, severe scores at the start of taking it, young age).

To mitigate the danger of coming off Prolia and rebound effect, I was prescribed an infusion of Reclast in mid March, exactly seven months from my last shot of Prolia. Well, last week I had another dexa scan and my scores are already dropping pretty dramatically, with spine at -2.7 (from -2.0 in 2024) and hip at -1.2 (from -.8 in 2024). Apparently Reclast is not preventing or even mitigating the rebound effect. My doctor wants to appeal to insurance again and try to get me back on Prolia. She thinks it is too dangerous not to given my risk factors and how fast I am losing bone density. I am very very reluctant to go back on Prolia (even if insurance will cover it which I am not confident of), fearing if I do I will never get off it again. I read that some people who do not respond to the first Reclast infusion post Prolia are given a second dose before the one year dosing schedule. I want to try this strategy, but insurance may not cover this either since it is not standard protocol, and my doctor is reluctant to do that.

I am wondering if there is anyone else here who came off Prolia after ten plus years on it and required more than one dose of Reclast to stop the rebound effect. Did the second dose help? How did you avoid fracturing? When was the second dose given and did you have trouble getting insurance to cover it? I am so afraid I am going to crumble with being in the eye of the storm of this rebound effect so to speak. I really don't know what to do and I need to make a decision soon. I'm hoping to hear from other who were on Prolia 10 plus years and came off it safely. Thank you!

For Evenity, I'm interested in using an infusion center due to distance from the endo. I'm still in discovery mode and haven't schedule my first dose yet.

My endocrinologist office seems resistant to my idea of going to an infusion center.

I want the center given its a few minutes drive away compared to 45-60 minutes for the endo. My endo told me that I will need blood work the first 3 months to check calcium levels and kidney function. I also figure I could go to the lab close to me for this as well. The lab is the same one as in the endo office.

I still plan to have the endo as my doctor overseeing my treatment and willing to travel to get office if I'm meeting with her to discuss my treatment. However, if we aren't meeting of what's the point of taking 3+ hours out of my day just for an injection or lab work?

What are the pros & cons of getting Evenity at an infusion center versus the endocrinologist office? What else should I keep in mind beyond travel convenience?