Just a spoonful of sugar…

Read any list of the effects of osteoporosis – broken hips- only thirty percent of people fully recover and twenty percent die. Spinal fractures lead to a slow disintegration of the spine, compressing the torso and making it hard to breathe and eat, and making moving difficult as well as confining people to views of their feet, if you can see past your stomach which gets shoved out, and nothing much else.

I have found a wrist fracture has wiped out three months of my life, with some capacity returning as strength and grip return, though I still have very little flexibility. I also has a screw that sticks up on my wrist , with just a thin cover of skin over it. My first visit to a physiotherapist this week has led to an instruction to learn to love my wrist as it is – I was turning away to avoid looking at the angry purplish lumpy area as she worked it rather painfully- but I need to train all the new nerve endings to behave because at the moment they are reacting as if a tiger was in the room at the slightest touch. I failed to ask the surgeon if the screws were slot or Philips headed- and if I weren’t so reactive I’d be tempted to get a tattoo of a screw head.

So, wouldn’t people diagnosed with osteoporosis be glad there were drugs available to help prevent fractures, and take them assiduously for the rest of their lives if needed? Figures vary in different studies, but about half the people prescribed drugs for osteoporosis stop taking it- and they were giving up in the first year or two. So why would anyone skip a small weekly tablet (which is my prescription) when they might be reducing the impact of a disabling condition?

To start with, read the list of possible side effects. The ones that leap off the page are osteonecrosis of the jaw (rare, admittedly) and a weird seemingly spontaneous fracture of the femur. Add in a variety of digestive issues, ulceration of the oesophagus, diffuse joint pain and several other unpleasant things and the desire to take the medication definitely goes down. I thought this sentence from patient.co.uk was a pretty good indicator of the tone of the general information “A rare side-effect is osteonecrosis of the jaw. This occurs when the jaw bone does not receive enough blood, the bone starts to weaken and die. You must stop taking bisphosphonates if this happens.” It doesn’t explain how to tell this has begun to happen. Oh, and by the way, you can’t have dental implants while on the drug, so hope your teeth don’t fall out. Just as well I gave in and bought an electric flosser after weeks of trying to figure out how to floss my teeth one handed.

Next look at how to take the pills. Eat them first thing in the morning with a full glass of water (what size glass? Why can’t they tell you stuff like that- people are used to buying drinks in different size glasses) and then stay vertical for at least half an hour after this. The length of time to be vertical and foodless varied, with half an hour being the minimum. Don’t take it while still in bed. This is all to help you avoid that pesky oesophageal ulceration. Fine, can do that.

Then you just get four pills, one for each week. Tiny things really. Got to remember to get a repeat prescription every month. Got to remember to take them the same day each week. Are people better at once a day, once a week, once a month or once a year medication? One study I read said the yearly injection could be helpful for compliance but the problem was then that it was the doctors that would have to remember and would that work?

So I take the pills. Hope I don’t get the side effects. Can’t find any charts which show the interval after beginning the drug when the different side effects would be likely to occur if they did. I chose a day for the first pill when I had nothing else scheduled, just to add safety to the process. If I am fine for the first pill will I continue to be ok? If I make it past the first month will I be ok? The first year? No idea.

So now I’m taking these pills. Hoping I don’t get side effects. Hoping it is helping me reduce the bone loss. How can I tell if it is working? Lots of chronic conditions have drugs to help- pills for blood pressure, for arthritic inflammation etc. With all of those you get a programme of testing to make sure that the levels of medication are having the desire effect and are the right dosage. With the osteoporosis pills you are told it might help and that pretty much seems to be it. If there is a programme of monitoring bone density I don’t know about it. There also seems to be a urine test for bone breakdown products that I encountered in one paper, but it was suggesting that was complicated to administer and I didn’t find out anything else about it. It is normal human behaviour to be more dutiful when observed- just read up on any of the studies on hand washing after using the toilet. There are trial projects that show that having a specialist nurse explain your results and follow up a few weeks later (a few weeks!) increased compliance at this early stage.

And the people running the health services fret because compliance with the medication is poor!

Enough for today….wrist has worn out. Curiosity continues.

I have recorded the sources for the studies I have used in writing this blog, but haven’t done official references or any critical analysis of the research papers Please don’t regard this as a scientific report, it is just one curious person trying to figure out a way to manage to get maximum gain and minimum pain.