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Co-Enzyme Q 10 and bisphosponates

So what is Co-enzyme Q 10 and why does it matter?  Reading the abstract on the impact of the drugs for treating osteoporosis I came across this lovely phrase “It has escaped notice that the pathway N-BPs block is central for the endogenous synthesis of coenzyme Q10, an integral enzyme of the mitochondrial respiratory chain and an important lipid-soluble antioxidant.”

The authors were suggesting that some of the awful side effects of the osteoporosis drugs, such as ” osteonecrosis of the jaw, musculoskeletal pain, and atypical fractures of long bones” could be associated with this disruption of these pathways, and supplementation of Co-enzyme Q10 and Vit E might prevent or reverse this effect.

I had noticed coenzyme Q 10 on supplement packets, and, rather amazingly, the general ‘women over 50’s’ basic supplement I bought yesterday has the stuff in.  I haven’t taken any general multivitamin/mineral supplements before, but had started as I was feeling so unwell following my wrist surgery.

It looks as if low co-enzyme Q-10 is implicated in neuromuscular and neurodegenerative diseases like Parkinsons, so getting low on that really doesn’t seem like a good idea.  A quick look didn’t bring up any research showing any increase or not in these diseases in people on osteoporosis medications, but that would be worth following up.

I don’t usually link through to Wikipedia, but they do have  a lot of information on Co-enzyme Q-10- most of which suggests that it doesn’t do much or turns out not to be in supplements that claim to have it.  Another area for a bit more research.  As far as food sources go – well, heart (ideally not fried)  seems to be the food with the highest concentration, but for those of us that don’t want to start eating that …then broccoli and spinach and avocado and olive oil do pretty well too.

So, another post that shows that I know very little…

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Understanding the diagnosis

We asked the surgeon about a test for osteoporosis.  He said to ask the GP.  It looks as if, from the general reading I have done, that the bone team assume that bone density scans are initiated by GP’s and the GP’s assume that the bone team consider whether they are needed.  It is easy for a patient to slip through this assumption gap.

We asked for a scan. The GP agreed, and a couple of weeks later I was seen in a clean, calm, spacious room, and a week after that the GP had the results.  I have a vague recollection that the GP (who is really lovely and friendly), said she didn’t know what the numbers meant, but the single score prompts an osteoporosis drug and calcium and Vit D supplements if wanted (my scores on calcium and Vit D were fine but I always buy own – it seemed simpler to get the higher dose offered by prescription).

Got the pills, read all the data on the slip inside the packet, read around about side effects and effectiveness…more on that in another post.

 

We took a snapshot on a phone of the scores sent through by the DEXA people.   The hip scan shows that there is an increased risk of fracture (osteopenia) and the spine that there is a high risk of fracture (osteoporosis).  There are lots of numbers but you really only need to look for the summary at the bottom – WHO classification.

 

spine scan

hip scan

Of course, that is sufficient to decide to treat given the current guidelines, but I like to understand what is happening.  The first thing to bear in mind is that these scores are relative -they compare the amount of bone to a fit health thirty year old woman.  They tell you information about the likelihood of a fracture from a very minor fall, or, in the case of the spine, from normal activities like turning over in bed. These scores tell you how you differ from others, and I’ll write about the relative risks they indicate in another blog.

My sister sent me an excellent book called “Yoga for Osteoporosis” by Loren Fishman and Ellen Saltonstall.  The first few chapters of the book contain the best explanation of the statistical tools of Standard Deviation and T and Z scores that I’ve come across and I have three social science degrees and have spent a lot of time in statistics classes.  I’ll refer to this book several times- there’s a great section on how bones behave which I’ll write about later.

I was curious to understand the reports because I’m just generally curious, and the reading I did suggested that it was completely normal to be given a diagnosis of osteoporosis and a medical treatment without any form of explanation. Not surprising then that so many people stop taking the pills.  You get to find out about the side effects (they are described in every single packet of pills) even if you don’t experience them yourself, but you don’t know what is happening to your bones and what you might be able to do to help reduce the chances of disabling injuries. You also don’t get to know if you are improving your bones by the measures you take, unlike things like cholesterol lowering drugs where you can get almost immediate feedback on how effective you are being with lifestyle, diet and medication changes.

So, lets start with T scores.  Presuming the information in this source book (written in the USA) is the same as the UK, the T score tells you how many standard deviations your score is away from that of a healthy 25-30 year old woman.  So, that is how much you differ from someone in their prime.  The Z score tells you how many standard deviations you are away from healthy women of your age, height and weight.  We all lose bone mass from about thirty on- just some lose it a lot faster than others, and the menopause, with its change of hormone levels, makes the whole process speed up.  Men – you aren’t immune to this bone loss either, so don’t think you’re safe from fractures.  A positive score means you have denser bones than average, a negative score less dense.

So the next thing you need to know about is standard deviations – don’t worry, quick and simple explanation.  You need to know if almost everyone is about like you (say if you were an inch shorter than the average height) or if you are very different from the average ( your annual earnings if you are a top movie star).  One standard deviation around the mean includes 68.2% of people – so over two thirds of people will be in that group.  Two standard deviations include 95% of people. Only one percent of people are more than 2.5 standard deviation from the mean. If your bone density is over -2.5 standard deviations from the mean then you have osteoporosis – your bones are less dense than 99 percent of healthy young women.  Between -1 and -2.5 standard deviations from the mean indicates osteopenia – thinning bones but not yet at such a high risk of fracture.

So, peering carefully at my figures, I can see the Z and T scores for both the spine and hip.

Spine  T score    Z score

L1      -3.7            -2.8

L2      -3.0           -2

L3      -3.8           -2.8

L4     -3.9            -2.9

total  -3.6           -2.6

 

Hip

neck   -2.2        -1.2

total   -2.3        -1.7

The other numbers are the density readings the statistical comparison uses.  They would be meaningful to bone specialists.  I don’t need to know to figure out what the scans mean for me.

You’ll notice that the numbers in the second column are smaller than the numbers in the first column.  My bones are much less dense than those of young healthy women, and not quite so much worse than women of my age and build.  One of my lumbar vertebrae scored less than the minus 2.5 standard deviations worse than other women my age (yay!  Go lumbar vertebra 2!).  They average out to -2.6, which puts my lumbar spine in the osteoporotic range- only this area is scanned so I have no idea what the rest of my spine looks like. My lumbar vertebrae are less dense than about 99% of healthy women my age.

 

The hip bone is more dense- I score in the osteopenia range, where the bone has begun to thin and efforts should be made to reduce the onward thinning, but the risk of fracture is not so high. My hip bones are less dense than about 90% of healthy women my age and build.

 

So, why should I care what this means?  I got the pills- why not just take them and hope for the best?  Well, partly because the side effects listed are pretty gross.  Partly because compliance with the medication offered is so poor- so many people stop taking the drugs within the first two years when the risks will only get greater over the rest of their lives.  Partly because it looks as if  postural and exercise changes can make a significant difference, and partly because I’m just chronically nosy.

 

 

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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.

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