? New fracture to previously fractured vertebra?

Posted by alijane @alijane, 5 days ago

Hi all,

I’m 53 and was born with osteogenesis imperfecta/ brittle bone disease. Throughout my life I have had multiple fractures and have severe osteoporosis because not only are my bones thin but they are faulty. I’ve had countless vertebral fractures throughout my spine, some severe and have led to hyperkyphosis. Because my fractures are to most of my vertebra it’s difficult to read X-rays. Last week I started with new pain, woke up with mid upper spine pain very different to my chronic pain. Pain with breathing, sharp feeling radiating to my right scapula, worse when sat up, standing and really bad in the car! I left it a few days trying to get hold of my family dr. I eventually decided to go to A&E. They did X-rays and said new/old fracture!! I know what fracture pain is like and am certain this is what I am thinking. I’ve had other fractures and I’ve usually in this instance had an MRI where they can see bone oedema and confirm it’s new. This time they haven’t bothered. I had Zoledronic Acid IV in 2021and my bone turnover markers in February were showing the benefit waning! Without a confirmed new fracture any medical bone treatment won’t be initiated. I’m not sure if I should push for an MRI? I’m sure everyone here will know how anxiety provoking this is? I know it’s definitely new fracture type pain, but now thinking am I overreacting? I have a pretty high pain threshold! When I was pregnant Ihad a fractured displaced hip and it was the worst pain! The gynae dr didn’t believe I was in pain and wouldn’t xray me because I was pregnant, I was like this for 3 weeks until after my son was born and Ibegged for an xray! Needless to say it was a clinical negligence case! But when I came into hospital this time the A&E dr was very kind and admitted me to the spinal unit, the on call senior level dr comes along and tells me I can’t be in much pain because I was too calm!! So he wasn’t going to prescribe me much!! I’m a specialist nurse myself and can spot a bad dr a mile away! It’s shocking that there are still crappy doctors providing poor care! I came home with a TLSO brace which I’ve never had before, and not wanting to wear owing to risks of muscle atrophy. Anyone have any similar experiences or advice? I’ve always trusted my own instincts and been correct! But at the point of saying what the heck!

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Hey, Alijane, welcome to Connect.
Those braces are formidable.
A&E is British, so I wonder if you are in the British health care system. It seems much more difficult to get good osteoporosis care in the UK, but the ROS nurses are an exceptionally helpful resource.
I would insist on the imaging in pursuit of the medications. Trust your instincts.
I wish we could keep those bad drs a mile away.
Have you never been on teriparatide for OI. It is a nice drug for fractures because if prevents nerves from growing into the fracture and has been found to relieve the pain of fracturing while rebuilding the bone.
It's discouraging to have to fight the doctors before you can fight the disease. But, the battle is worthwhile.
I hope you have some luck.

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Profile picture for gently @gently

Hey, Alijane, welcome to Connect.
Those braces are formidable.
A&E is British, so I wonder if you are in the British health care system. It seems much more difficult to get good osteoporosis care in the UK, but the ROS nurses are an exceptionally helpful resource.
I would insist on the imaging in pursuit of the medications. Trust your instincts.
I wish we could keep those bad drs a mile away.
Have you never been on teriparatide for OI. It is a nice drug for fractures because if prevents nerves from growing into the fracture and has been found to relieve the pain of fracturing while rebuilding the bone.
It's discouraging to have to fight the doctors before you can fight the disease. But, the battle is worthwhile.
I hope you have some luck.

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@gently
Thankyou for your helpful reply. My specialist applied via NHS for this but I was rejected. However if I prove this is a new fracture then it’s possible I could qualify. I have had so many drs refuse to believe me, only to find I did have a fracture or even a stroke! All of my health issues caused by OI. My first fracture as a child the dr refused to xray me because I wasn’t crying! So feel totally peeved! I will continue to argue my point.

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alijane, you've been fighting this even as a child, your bravery rewarded by disbelief.
It's wild that the NHS wants you to fracture before being given the medication designed to prevent fracture. I understand that the fracture has to be less than 2 years old.
Romosozumab is available in the UK. It's an monoclonal antibody against sclerostin, just like the new medication, Setrusumab, being trialed (only in children) for OI.
Can the NHS decision be challenged.
https://oife.org/what-we-do/research-development/ongoing-clinical-trails/
Bless your strength, bless your bones.

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