I’m 27 with severe osteoporosis and multiple vertebral fractures. My spine basically collapsed last year from too many corticosteroids. I shrunk 3 inches, have a hunchback, basically got the body of an elderly woman, have pain daily, and can’t have kids now.
I’ve come off steroids entirely and been on forsteo for a yr and had a 12-15% increase in BMD but wondering if anyone else has been in a similar boat and if they did anything else to further increase bone density or what they did post forsteo ?
There is so little research on secondary osteoporosis and it feels isolating when doctors tell you you’re such a rare case. My fractures were even misdiagnosed for so long because they didn’t believe it could happen to someone in their 20s
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Hi, I'm afraid I'm 40 years older but understand the pain and frustration, worse for you of course as it's happened so soon! I am 6 " shorter. Hope someone younger comes along for you or is there a support group you could join? Best wishes and good luck.X
Oh my gosh, one can lose more than three inches? I've lost three (age 62) and my ribs are definitely hitting my pelvis, kinda hoped that would be "it". I do have mild scoliosis, I suppose that could get worse, further reduce height. Anyway, how are you doing? I have struggled so much with pain that I can hardly bear to think what you must be dealing with. 😞
Aw, thanks. I was tall to start with nr. 5'10" with a long back, athletic and horsey so it, and me, had a hard life. My humour is the best medicine I've got and I have a high pain threshold, inured to it but take minimum meds to take the edge off. I can only stand/ walk a few minutes at a time but I'm very efficient and tenacious so can fit a lot into a day. Can't get a good cleaner though so diy and nag lazy X. I am mostly happy but do wish I could stand up straight had no pain etc... Anyhoo thanks for your kind msg and do get your pain under control. 🤗
yes I had osteopenia when I was 18 and developed into full osteoporosis when I was 28 but could of been before as I hadn’t had a dexa in between. I broke my hip whilst running and also broke all of my ribs on both sides in multiple places from falling out of bed in hospital!!! I am now on Zoledronic acid infusions I’ve had two so far and my spine has gone from osteoporosis back to osteopenia which I’m so happy about my hips are still -3.3 t scores but I have another infusion in January then we will reassess. It isn’t that rare in young people, have the established why you have osteoporosis because treating the cause is usually the best option. I have suffered with bowel issues from a young age which is what it was attributed to and been on lots of steroids for inflammation in my bowel but recently my gp reviewed my bloods and said that I have Hypophosphatasia which should of been picked up when I was much younger and wouldn’t of developed into osteoporosis bad they picked it up earlier 😡
So sorry to hear. I fractured my hip at 37 (male) and discovered low BMD afterwards.
Make sure you have exhausted every avenue in terms of looking for any underlying causes.
Nothing was found for me, but you are far younger so I'd make sure you are getting everything checked to make sure there's not something going on which can be reversed.
Potential culprits which comes to mind:
Caeliac, hyperparathroidism, throid issues, hormones, IBD and other malabsorption disorders. certain medications (e.g. corticosteroids), autoimmunity (RA, etc), mast cell diseases.
Don't let your GP fob you off and get yourself tested privately if necessary. Many conditions can be checked via a blood test.
I am sorry you are going through this. You may be interested in learning more about osteoporosis and the mechanisms that cause it, and what can be done about it, by reading Keith McCormick's book. He suffered fractures in his 40s despite being a competitive athlete. He has a background in biology and chiropractic. His most current book is called Great Bones. He does telephone consults if that is of interest to you. He did use medication in the beginning so he doesn't necessarily dismiss that option, though he does provide insight into what you can do nutrition wise. I found that reading the book gave me a better handle on the condition and how to address it. Just beware that any of the meds have possible side effects, and that Prolia can't be stopped without relaying to another drug in order to lock in gains and prevent drug-related fractures. Whatever course you take, make sure you are informed of the pros and cons and are comfortable with your decision. Good luck on your journey.
I’m 28 and developed osteoporosis due to steroids and have had 6 or 7 vertebral fractures (and lost count of the rib fractures now!).
It’s rubbish. I had a year of alendronic acid, have had one zolendronate and am currently waiting for my second one. Once I had the fractures it didn’t take too long to diagnose them (although mainly because I’d just got the results of a dexa showing rubbish bone density so I suspected them!) but really struggled to get my medical teams to take the risk seriously. I kept asking for bone protection because I’ve been on long term prednisolone since 2018 and was losing height but was always told I didn’t need it because I was young and my first dexa was fine. But my first dexa was done only a month or so after I got stuck on the steroids so it was always going to be fine! Fast forward 3 years and 4 vertebrae broke at once 🙄🙃
Sorry to hear this. I not young but bone loss is really awful. Can u take calcium in any form?
I'm sorry you're in such an awful situation, but there is hope and you're not alone. Definitely read Keith McCormick's books for a really good understanding of how osteoporosis can happen at any age, and what can be done about it. You are young and still have a good chance of rebuilding your bone density, as long as the underlying causes of it are addressed. He has helped a lot of people of all ages.
You'll need to be your own advocate, as unfortunately it's a disease not well understood by many doctors. You need to push them to work with you on rebuilding your bones through other means too, not just drugs. Depending on the cause, you will probably have to address your approach to nutrition and lifestyle too.
For your dowager's hump, and other brilliant advice on living with osteoporosis, coping with compression fractures, improving your posture, and improving your bones through gentle exercise, see Margaret Martin's melioguide.com . She's a Canadian physio with a massive amount of knowledge.
Depending on your finances, consider a Marodyne Liv low vibration machine (it's very important that the vibrations are low, otherwise you'll do yourself further harm). For people who are limited physically, it's helpful in maintaining and even building bone mass. It's like a pair of scales, you stand on it for 10 minutes a day. I've used one twice a day for two years and, along with diet and lifestyle changes, managed to increase my bone density by over 15%, I'm no longer osteoporotic.
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Vibration therapy for building bone density
do vertebral fractures occur when a person is NOT on any osteoporosis drugs?
