'Breaking' news of Osteoporosis

My doctor had been muttering for two years about organising a DEXA scan for me. I wish she had done it when she first said she would.

A DEXA scan measures your bone density at three sites: Lumbar spine, hips, top of femur. This is a good idea for post-menopausal women, especially those of us who have had to take cortico-steroids such as Prednisone for extended periods (months or years) as those leach bone strength.

I eventually received an appointment. DEXA or Dual-Energy X-ray Absorptiometry, is  a fast, painless imaging test that uses very low-dose Xrays to measure bone mineral density and body composition. It is the gold standard used to diagnose osteoporosis (brittle bones) or osteopenia (low bone mass), and to assess your risk of future bone fractures. Bone fractures can be life-changing and sometimes fatal. DEXA generally focuses on the hip and lower spine and the head of your femur (thigh bone). You lie on your back making sure you are wearing no metal and the machine moves back and forth scanning your mid-section. It's easy. It takes 10-20 minutes maximum.

• Do not wear clothing with metal zippers, belts or buttonsDo not take any calcium or tums the morning of the exam
• If you have had a barium study wait at least 7 days before having a DEXA scan
•  If you have been injected with contrast CT or MRI scan, wait at least 7 days before having the DEXA
• If you have had a Nuclear Medicine study done, wait at least 7 days before having a DEXA scan.

What happens if your scan comes back showing that you have osteoporosis? This can be a shock. It was for me as I have always kept very active throughout my life with going to the gym and various forms of dance, gardening etc. I thought I would be Ok, what more could I do? Unfortunately I had been prescribed 16 months on the steroid Prednisone for Polymyalgia Rheumatica. Prednisone has multiple nasty effects. To help my bones I was also prescribed monthly vitamin D but it was still stripped out. Now I felt fragile in my lumbar spine, hips and femur. Scared something would fracture (always possible with my bad T scores). So what do doctors do for folks like me? They prescribe bisphospohonates.

Normally the oral form is prescribed but my stomach, which has already been wrecked by doctors' prescribing habits, is unable to tolerate them in my stomach. This class of drugs slows down the body's natural osteoclasts from breaking down old bone. I asked about anabolics which encourage osteoblasts to build new bone but was told NO. They are too expensive and are never used unless the bisphosphonates don't work. There are other drugs requiring injections but you can never stop using them as if you do your bones will almost immediately deteriorate.

That left me with only one option: have a bisphosphonate infusion - straight into the veins thus bypassing the stomach. They hook you up to an IV for 20 minutes and you are done for a year. OK, here's the bad news... there are side effects. One of the most scarey is osteonecrosis of the jaw- basically your jaw bone starts to die. It is rare but it happens. You can't have any major dental surgery while on this stuff so get checked over by your doctor before having the infusion. And wouldn't you know it, as an older person I had a severe reaction about 13 hours later. It was so bad I rang healthline for advice. They called an ambulance $$$$$$. Arriving at the Emergency Department I was looked after by kind doctors and nurses. Chest Xray, back Xray, blood tests, vitals. I had chest pain, extreme pain in my back and shoulders and major sweating with rigors, vomiting and a temperature. When you live alone these effects can be frightening.

Once the ED had determined that it was the infusion creating the havoc and that my life was not in immediate danger I took a taxi home but I was far from well - violent vomiting, inability to eat and look after myself I simply had to stay put in bed or on the sofa until it wore off over the course of 3-4 days. I had expected flu-like sytems and headaches but not effects on this scale. My doctor had sheepishly said, before prescribing the infusion, that she had one woman who refused to ever have it again, it was so bad. ED said it could be tough. I would recommend finding someone to stay with you over the recovery period. Alas, I did not have that option.

I may have to repeat the infusion in a year. I was told I wouldn't have such severe reactions subsequent times. Oh yeah? My doctor has since said that due to my severe reaction I shouldn't have any more and will be referred in a year to a bone clinic where I might actually get what I want/need, anabolics to build bone. In the meantime she suggested I employ a physiotherapist to create a safe set of bone-strengthening exercises. 

I thought I was a strong and active person but this diagnosis can seriously affect how you see yourself and what is safe to do. Due to problem shoulders I can't do much in the way of weight training so will look for alternatives.