Hi and a Happy Christmas to all.
Found myself in a rather horrible situation last month. Not sure what is worse at the moment the part leading to hospital admission and diagnosis five days after or the three attempts it took me to get anyone to listen prior to this. Ridiculous when you consider I could hardly walk, any movement, cough or deep breath especially when vertical causing both legs to violently move upwards my knees heading towards my chin causing extreme pain.
The biggest confusion was my primary disease is Lupus. All the medical staff could see was someone who must be having a bad renal flare. I now wonder just how many of us are overlooked or ignored because they cannot see beyond this to the list of other conditions that we find ourselves living with as the years move on. Sorry to all that I sound a little pathetic or even a little melancholy but it's happened to me before. On that occasion I was left to my own devices with acute pancreatitis diagnosed by mri during menopause. Believe me please because like all of the problems big and small we live with it's often made even worse by lack of care or understanding. Doctors, people in general often say they understand a disease but living with it is very different. Take care out there everyone and keep going. I mean it sincerely.
Less of that. Now to Prolia. Four doses and I found myself ten days after the fourth injection with spinal pain, pain across upper back and buttock area which lasted two weeks. Jaw pain had already started and became more severe in right side upper jaw. A nurse had panicked already when I needed a filling when I attended for the fourth shot and refused to inject me. This was completed the following month. By the time the fifth shot was due I had huge concerns as my dentist told me three previously healthy teeth needed extraction and was very concerned re the jaw pain. I was at that point concerned with what I had read already re prolia. A consultant's appointment was pulled forward to talk about my concerns. As expected he wasn't available when attended. My GP was unsure about making changes to my care without his advice and so two months later I found myself diagnosed with two compression fractures in my ribs and a month later five vetebral compression fractures in my spine with bilateral nerve damage. The jaw pain has ceased. Fingers crossed at mo on that subject.
It's good to listen to our doctors. Mine was brilliant at the start of my care many years ago. Sadly like many of us my recent horror has left me feeling like a specimen and not someone who rarely asks for support but when they do it would or could have made a huge difference.
I now never want anyone to mention the word prolia in the same room. The doctors who finally diagnosed me apologised for their confusion and looked after me very well. Their faces and that of an orthopaedic surgeon who I have seen since showed confusion. No falls, no trip-ups, no huge cough or sneeze as well as no past fractures. Simply rebound fractures from a drug that is promoted to many including those like me with low risk of fracture but a dexa scan result that led to it being pushed on me.
Please do not take offence at the following. My partner has had cancer for four years. But we wouldn't take a cancer drug before we were sure and full diagnosed risk factors completed would we? He's still under treatment and now is kindly helping me through this. He didn't need to making use of his little energy by helping me wash and dress as well as take over all the household chores. It's not just our diagnosis we live with it's the time, energy and frustrations surrounding.
Keep going you lot. And take care.