Osteoporosis and Osteonecrosis

Hi I'm 49 years old and I have scheuermans disease of my spine and Kyphoscoliosis and also Osteoporosis and Osteonecrossis.

I'm high risk of spinal fractures and increased risk of pelvic and femur fractures. I had to have four bones removed from my left hand and also has surgery to shave my elbow.

In 2012 I was on the pathway to have titanium rods attached to my spine, unfortunately I was turned down for the surgery as my spine wasn't stable enough to support the metal work needed. Surprisingly during the MRI scans and CT scans it was noted that both my jaw joints had died and were crumbling away and a diagnosis of Avascular Necrosis was given. I also have many other medical health problems and one of my main health problems is Emphysema and flattened diaphragm due to the Scheuermans disease and the kyphoscolliosis.

In March 2015 I underwent a 6 hour operation to replace both my jaw joints with titanium implants. The operation was a success. I now have Dexa scans every 2 years and I also have an injection every 26 weeks to help increase the bone density, the injection is called Denosumab or another name is Prolia.

I also take adcal D-3 twice a day and I also use a wheelchair.

Does anyone else have the same as me

8 Replies

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  • Hi mutt so sorry for your difficulties, you have a lot going on healthwise and I am not sure if there will be another who will have the same as you

    I have osteoporosis, osteoarthrities and a few other health issues but I've not had surgery to the extent you have, nor in a wheelchair.

    I take calcichew D3 Forte and xtra vitamin D3 daily. I exercise regularly. I was contemplating Denosumab earlier this year but 3rd dexa scan revealed an improvement in bone density, hope to maintain this or better still improve more through diet and exercise, my next dexa scan due in 2018.

    Do hope you are getting all the help you need.

    The NOS helpline is open if you need further advice:

    nos.org.uk/help-and-support

  • Thank you Bkin for your reply, I do have a great team of care professionals who support me. I also take adcal D3 chewable tablets twice a day. The main reason I believe for my bone troubles is the amount of steroid inhalers, steroid tablets and nebulisers. I also had a hysterectomy when I was 28 due to servers endometriosis.

    I always try to live with my glass half full as opposed to half empty, even though I have a lot to deal with.

    I will definitely have a look into the web page that you have given me.

    Thank you x

  • Likely the early menopause, (lack of estrogen at an early age) and unable to weight bare (being in a wheelchair) along with your other illnesses may be playing a part in your bone health or lack of, these along with many other things and medications like steroids can impact of bone health. Sadly its probably a combination of things in your case. In many peoples case also.

    So glad you have a great team of care professionals that support you. :)

    Glass 2 3rds full or just full is a good option too ;) even with health issues :) ok maybe we can knock 1 3rd off for them :)

    Best wishes to you.

  • I agree with Bkin you should contact the helpline. Unfortunately the denosumab may be responsible for some of your problems as it works by killing the osteoclasts. These are the cells which are responsible for breaking down bone so that the osteoblasts can create new bone on a new matrix. Briefly you can experience increased bone density, but the bone being formed is not going to be properly modelled and in the end will be brittle. The other problem with this particular medication because it doesn't just slow down the activity of the osteoclasts but kills them, it has an effect on the immune system. I do not have any more information than that, and am not a medical person, but I would recommend you try to find some other way to heal and strengthen your bones if possible. How long have you been on bone medication? it would be a good idea if your current difficulties were reported to whichever agency keeps track of drug side effects. The effects of the bone meds last for years so to stop taking them is not going to instantly have a bad effect and it may give your body a chance to start healing. There is a lot more we need for good bone health than calcium and D3 (magnesium, Vitamin K2 spring to mind). Good luck.

  • Thank you HeronNS

    I will definitely get in touch with the helpline, Ive on the Denosumad injection for abou 3 years, and my ostoporosis was diagnosed along time before taking the injections. I am also aware of the hidden dangers and believe my current state is a combination of multiple health problems and the vast amount of medications I take. I have to have a blood test two weeks before my injection to check my bone profile. I also have a Dexa scan every 2 years. My last one was in July, and my Osteoporosis Nurse specialist sends me a letter informing me to continue, I am also under the rheumatology, endocrine, respiratory, orthotics, ENT, Hearing therapy and Tinnitis therapy, maxillofacial, spinal, and musculoskeletal teams, I am very well looked after. A lot of the teams I am under I had a working ethic with them during my working life before being medically retired.

    I also have the same thing occuring in my ribs called Costochrondritis which causes inflammation of the cartilage that lies between my ribs and my breastbone. It's also known as Tietze's Syndrome.

    My Immune system is shot to bits due to my association with HLA B27 genetic gene, both my sons also have this but I'd different ways.

    I do eat a lot of dairy products, and I'm a bit of a cheese addict, I always have full fat milk and youghurts.

    Thank you for taking the time to chat with me. X

  • Sorry I meant Denosumab...

  • You sound like a walking textbook! Have you thought of writing an article on the various issues you face? It could be really helpful to medical people.

    Hugs (gentle ones) ❤

  • That's a good idea HeroNS, I did contemplate on studying Medical Law, and to use my medical degree along side, to then offer my help to those who have been subjected to any form of medical negligence. I had put it on the back burner as I embarked on my surgery I had in March 2015 to replace both my jaw joints.

    I mentioned your suggestion to my eldest son who is my main carer, and he said it is definitely a good idea.

    I will let you know when I start and when I finish it, you have initiated a spark inside of me and have given me a positive project for me to focus on. Even though my body laughs at me each day, my mind is still questioning life and I enjoy the research element of medical ethics and the efficacy of medicine.

    Who knows it maybe a medical reference book for nurses and the medical profession as a whole.

    Thank you for initiating inspiration again in myself and thank you for the gentle hug ❤️

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