In the spirit of sharing

[rnb054]

I do not post often, but do follow the forum on a regular basis. I am very grateful to have you all as sources of information.

According to the latest DEXA scan, I have severe osteoporosis (-3.7 AP spine, -2.7 femoral neck, total hip -2.5, total forearm -3.7). Both the rheumatologist and endocrinologist are pushing Tymlos or Prolia. I have not started any meds yet, trying to maintain (or maybe increase) bone density through exercise, diet, and some supplements. I do a lot of walking, some weight training and stay pretty active. I have no fragility fractures, that I know of.

On a short walk yesterday, I fell. It was a middle of the day walk to the post office near my office. I did not notice the uneven sidewalk and took a tumble onto the pavement. I landed on my hands, scraped my left knee and hit my right knee. At first, I thought "oh boy, this is it", but as I got up and assessed the situation, I realized that I could continue on my walk, even though the scraped knee hurt. Got back to my office and continued working.

Today, my hands still hurt, my left knee is scraped, but the bone is fine. My right knee does not hurt.

I can't tell you how many sleepless nights I have had worrying about falling since I have been told I have severe osteoporosis and I have chosen not to take the meds recommended. Perhaps there is some truth in the fact that bone density does not translate into bone strength, yet we are not told any of this. Only speaking of myself. Of course, if my bone density continues to decline, I will absolutely consider the medications. For now, I will continue on the path that seems to keep me OK, even if I fall.

Many thanks to everyone for their contributions.

[HeronNS]

Walking is a good exercise for the bones - but not falling! So glad you didn't break anything, a good sign? Have you seen my story? Some tips there to help you in your quest to continue avoiding the drugs!

healthunlocked.com/pmrgcauk...

[Jumpey in reply to HeronNS]

Great resource .

[hjskev]

Lovely story thank you.

[skinnykangal]

Wow! Well done you! I could feel your relief from the page - when you assessed yourself after the fall and realised no major damage had been done. I am also avoiding the meds and managing to reverse the condition and improve my bone density - although my scores are not as low as yours. I follow a mainly alkaline diet and do daily weight-bearing exercise either a hatha yoga class or a speedy walk. I started the regime in June 2021 and this Dec 2023 showed my lumbar spine to be back in normal range (+1.0) - that's a Z-score. It sounds like you have a good attitude toward this condition - doing what you can naturally but accepting the meds may become needed later. I wish you luck.

[Jumpey]

Great you didn't fall! X

[Jumpey]

I meant break anything ! X

[Smilerv]

Thanks for your post rnb054. I am feeling my way through my own journey and appreciate your original post.

I find that I have to modify any exercise that I do based on what I have learned about this osteoporosis rather than follow one regimen. I especially modify yoga and weights (light).

I’m not the biggest fan of eggs but will definitely look for free range hen eggs in the future.

Thanks again!

[nottowell]

You are wise to think hard before taking all the meds which i think is an easy option for them. I have had a few breaks one so bad i have lost the use of me hand after a broken wrist. I took Aldronic Acid until it made me really ill then switched to Prolia, i have no side effects at all, but can have no dentist treatment without maxi facial first not good

[Elizabeth65]

Hi,

So sorry to hear of your fall. You did not mention your age. First may I ask have you good teeth or could you require teeth extraction in the future? If one is on Prolia or other Bidphosamates your dentist will be very cautious and usually asks that you stop the meds for months before doing extractions, implants etc. Prolia stays in your system 6 months but other meds last shorter periods. In USA patients who stopped Prolia or got Necrosis of the Jaw have filed Law cases hence dentists caution with patients on bisphosamate patients.

In my case I had decay under a crown and was told to stop Prolia by a Dental Consultant as an infection could cause necrosis of the jaw. I did not renew Prolia that month and within 3 months I got 2 spinal fractures in my spine. I was told months later that when one stops Prolia then the body Dumps all built up calcium coming off Prolia...no fall, just Prolia caused my first fractures ever and my Deca dropped on chart by 45 degree fall.

No one told me that information or warned me. I wrote to Drug Authority in Ireland to report and to Amigen and they now have a Warning on the Prolia Box..not to stop Prolia or fractures may occur. Too late for me as I had to give up work and pay thousands on consultants, hospital, depression, anxiety. I did not play golf for over 3 years nor wear high heels. I could not dance and it took me years before I could walk any way along the sea walk where I use to jog or run.

I had Dexa scan which showed a drop of 45% compared to my scan two years before Prolia withdrawal. I only had osteoporosis - 2.5 in two areas and osteoporosis in other areas.

I would ask your consultant to put you on Parathyroid infusions and then Forteo infusions... I think that's name of infusions. Also you should get your dentist to examine every tooth for possible future dental issues so you can start Prolia. If you have dental work then ensure you go to specialists who know you are on Prolia and if you have to stop for dental work to put you on another med that does not Dump your new bone. Get teeth cleaned twice yearly.

At -3.5 that is serious bone loss so I would take meds otherwise you will be crippled and will fall. One can break a bone just turning in your bed and fracture and not realise it because it not a large bone like your femoral, spine etc.

You need meds with such weak bones and compression fractures occur just getting out of bed and don't always cause pain. Please listen to your consultant and have your teeth checked by Scan, X-ray, dental mouth check before Prolia or infusions.

Prolia injections are given every 6 months with no delay whenever they are renewed... or you will get reabsorption fractures like me.

Best wishes

M

[Arie4]

I agree 100%! I was told I had osteoporosis but as hard as I try, I’m clumsy & move too fast, then fall. Many times in the past couple of years! And never broke a bone. So: density isn’t the whole story, my friend, as you’ve said. Stay away from those harmful drugs. I realize the worry is there.

I took PROLIA for 4 years & just begun taking Reclast to transition off all drugs, I’m paying close attention to my nutrition, exercise & staying away from any/all drugs that could derail my health I wished I’d never started these drugs. Good for you & bestof everything to you.

[Deb967]

I wanted to do that too. Naturally but was told that isnt enough to help it.

[josephinius1]

I have very bad bones too, and I have fractures. Only found out about it in 2023. I had to have been percolating osteoporosis for a long time to get as bad as I am (first DEXA had my spine at -4.6, a year later at -3.9,who knows which score is correct--either way, bad.) I was a runner up until 2022, also walk with a strong dog who's obsessed with squirrels, cross-country skied (last time days before my first DEXA,) and an lamentably. I hate to say I fell on a regular basis--every which way. The only time a fall resulted in a fracture was when I slipped on ice and broke my wrist. (That should have clued someone in to my bones generally, but it didn't.) I'm not saying this is good, just agreeing with you: there's a lot more, I think, that goes into the hip fracture (which evidently is why they want us to take drugs--they don't seem to really care about vertebral fractures,) than just...falling. I don't even think my bones are strong, but what I DO have going for me, so far, still, is pretty decent muscle mass, and some fat doesn't hurt either.

Even my grandma, who didn't have much muscle or fat toward the end ( lived to be 104, and never was fully immobile,) and was truly frail and a fall risk due to poor vision, fell multiple times, sometimes flat on her face, but she also only ever broke her arm (twice) in falls. She DID have hairline fractures in her hip, but those are more wear and tear.

My fractures are wear and tear too (vertebral). That may be more scary in some ways, but I do think they're not as hard to live with.

Obviously, this is not the case for everyone. But as I've lived this, and as I've read up more, it does seem that those who actually die as a result of the hip fracture are. as it is with so many things. afflicted with co-morbidities, especially "advanced age". Which does make me wonder why they push these drugs, that can have significant side effects including the truly dreaded (for me) atypical femur fracture, on younger people who will end up taking the drugs for longer thereby increasing their risk of side effects, when the chances are they're not going to break a hip at age 60 (if they're otherwise healthy)?