osteoporosis, Uncategorized

Silence and finding a voice

It has been a very long time since I wrote on this blog.  Looking at this site I see I have several drafts waiting for completion.  Why the silence?

 

In November of 2015 my mother became very ill and, after a month in hospital and nursing home, she died.  While I was helping look after her with my brothers and sisters I decided to stop taking my bisphosphonate, alendronic acid, as it was just one more thing to take into consideration in this chaotic time.  As the effects are very long lasting I figured it wouldn’t do me any harm.

 

While everyone around me was feeling upset and miserable I was feeling more cheerful every day.  I realised that I had sunk slowly into quite a severe depression while taking the alendronic acid, but, being a gradual shift, I hadn’t realised what was happening.  There is a tale that if you put a frog into room temperature water and gradually increase the temperature it won’t jump out and will end up being boiled to death.  That’s what was happening to me.  I do recollect standing outside my lovely new studio on a sunny summer day wondering why I wasn’t happy, but didn’t take the thought any further.

 

It took a full year off the drug to feel that I had regained my biochemical balance.  I can’t say I am happy all the time, but my moods are related to things that are happening to me, and my baseline is my usual rather annoying Pollyanna seeing the good in things.

 

The data on depression and bisphosphonates is very sparse.  I found a report of five people who had reported depression, and the consultant I now see for treatment discussions said she found some too.  That is important to her, as she can say it is a little reported but known reaction.  I have chatted to several people about depression and osteoporosis drugs, such as the guy who plastered my staircase ceiling, and he said “oh yes! I noticed my Dad couldn’t be bothered to make a cup of tea so I told him to stop taking the drugs.”   I suspect that the large drop out of people taking these drugs includes a lot of unreported mood change.

 

I had intended to do a PhD in this area, but felt so demotivated I deferred the place at University, and then changed to doing a part time MA in Fine Art, which felt like a manageable introduction back into doing things.  I’m now working on interpreting issues around bones and health in my art, and am starting on an animation of bone remodelling.  I still maintain my interest in the personal and social effects of an osteoprosis diagnosis, but am looking at matters from another direction.  I am pleased to report I am enjoying the course, though finding it difficult as someone whose previous education and work has always been in the social sciences, to understand the vocabulary and rhetoric of this area.

 

My intention is to use this site to discuss the issues in this area that interest me, so that I maintain a word picture of my researches as well as sculptures and other visual media as outcomes.

 

 

 

 

 

 

 

 

 

 

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Fear of the tiger

If you are walking in a forest where you know there is a tiger, it is likely that every crunch of a twig or breath of wind makes you think the tiger is about to leap out of the undergrowth at you.  The birds and bugs and even a friend approaching along a path could cause you to panic. There are also other things that could cause you harm, you might twist your ankle on a loose rock, be bitten by a snake or stung by an insect, or even be turned on by someone you thought was a friend and stabbed.  Whatever the hazards your focus will be hoping to avoid the tiger.

The drug recommended as the first line prescription by the NHS  for osteoporosis is a bisphosphonate called alendronic acid.  This has a list of side effects so long and so appalling that many people refuse to take the drug when it is prescribed after diagnosis.  Starting to take alendronic acid (which my phone autocorrected to ‘ale demonic’ the first time I wrote it) I’ve been waiting to see which of these side-effects I was going to fall prey to.  For those of you lucky enough not to have read the list, they include spontaneous fracture of your thigh bone while you aren’t doing anything, to death of the bone in your jaw.  It doesn’t help that these drugs are also not curative, but just reduce the incidence of fracture,  possibly increase bone density but not necessarily in any way which correlates with bone strength, and also that there is no easy way as a patient to know whether they are working.

I was quite surprised not to have the very common digestive issues associated with taking alendronic acid.  I have a chronic digestive issues, and the osteoporosis is probably due to the malabsorption I have struggled with all my life.  I did get a few muscle cramps, but not  very severe or long-lasting.

While taking these pills I had to have further surgery on my wrist as one of the screws had come loose in the metal pinning my wrist together.  Just after that I slipped while having a shower and broke my ribs and damaged my shoulder.  That was excruciating and awkward to live with, and as the ribs have recovered the damage to the shoulder is becoming more apparent.

I also have issues with sensitivity to metal – I no longer even wear a gold wedding ring as it makes my arm ache.  I only wear textile, plastic or glass jewellery.  So, I thought the dull nagging nausea in my forearm might be a reaction to the metal used to hold my wrist bones in place while they healed.  If it needed to be removed that would have to wait a year for the bone to be fully healed.

I put up with the forearm discomfort, the thumb ligament that still doesn’t work so I can’t grip, and the shoulder pain and lack of mobility which makes sleeping intermittent and means I cannot drive.  I also put up with a feeling of having quite severe jet lag and not being very sure where my feet were.  I felt disassociated all the time, as if I had to work harder to figure out what was happening.  I got car sick almost immediately when being driven anywhere. I also felt very tired, and kept wishing days only had twenty hours in, as by five in the evening I could hardly move. This general malaise didn’t seem to be vanishing, and I was considering what it would be like to feel like this the rest of my life.

I mentioned to the GP that I was considering giving up the alendronic acid.  I have modified my diet (more apple peel, more onion, more citrus peel, less coffee ) to improve bone health, I have bought an excellent weighted vest, I had a private Vitamin D blood test to ensure my levels were optimal.  I use a posture coach (Lumo Lift) which reminds me to keep my back straight and encourages me to walk more. I can’t use the weighted vest yet as my shoulder hurts too much, but the data does seem very clear that adding weight close to the torso increases the work and so bone density of the spine in a way that is safe.  I do carry one of the flexible weights is a runner’s waist- bag occasionally to add work to my general movements.

Unfortunately many exercises are divided into – if you don’t have spinal fractures do this, but don’t do them if you do have spinal fractures.  I couldn’t get anyone to do the necessary scans to tell my whether I already have wedge fractures, and the research shows that many people with spinal fractures don’t know they have them.  So, safety is a very important aspect in managing the exercise.  I also can’t get up and down to the floor to do the effective back extension exercise at the moment so all these planned programmes are waiting for my shoulder to improve.

The doctor had  a quick look at my T -scores and said I shouldn’t stop – she suggested I ask the National Osteoporosis Society for advice and check out alternative drugs.  My chiropractor said he thought the once weekly pill would be unlikely to lead to such a steady state of side effect, and could it be something else?  It hadn’t crossed my mind to check alternatives as the alendronic acid was the tiger that had been looming in my mind.

I had changed a number of things over the last few months.  I used a different face cleanser as I cannot wring out a washcloth and needed something easier to remove.  I’d taken more pain killers.  I’d started using a conditioner on my hair.  All minor things unlikely to make such a  difference in my health.  I had also started taking the prescribed Calcium and Vitamin D supplement, AdCal.  In the past I have sometimes had to stop taking a particular type do calcium as the pills gave me migraines, but I’d never had any other negative effects.  SInce I’ve taken a calcium supplement every day for over thirty years ( if I skipped a day I got muscle cramps), I had always been super careful when formulations changed.  However, I just took these pills without question, giving the remainder of my usual pills to my sister.

I stopped taking the calcium.  Within three days I felt a lot better.  By the end of the week my head felt clear and I had regained a sense of precision in where my feet were.  By day ten the nausea in my forearm had receded.

I bought a different  Calcium and Vitamin D supplement.  Four hours after taking one I started to feel fuzzy again.   I stopped.  I bought another variety I used to use…tried one of those this morning.  I don’t yet know if I’ll get the fuzzy feeling but I did get a mild allergic reaction to something in the pills as my ears went bright red and itchy half an hour after taking it. In an ideal world I’d have placebo calcium supplements and not know what I was taking…but for the moment I’m just hoping that a fortnight without supplements won’t be stripping my bones further.  The pill I took without even thinking about it turned out to be the problem – my friend, not the tiger.

I filled in a Yellow Card- the notification system for reporting side effects.  I couldn’t find any record of these side effects being noted before.  It would be interesting if some of the terror of bisphosphonates was due to an interaction with calcium supplements or the formulation of the supplement in itself.  GP appointment is tomorrow.

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Calcium supplements- does it really matter when you eat them?

The calcium and Vitamin D supplement I have been prescribed (Adcal-D3) comes with the usual array of advice and warnings on any pharmaceutical. I’m to eat two a day, one in the morning and one in the evening.

The Package Leaflet says that the pills should not be eaten within two hours of food rich in oxalic acid, (eg spinach and rhubarb), phosphate (e.g. bananas) or phytic acid (e.g. whole cereals).  So, you set out to eat well, with your breakfast of whole grains and sliced bananas…but now you have to wait two hours before you take your calcium…say mid-morning while you are charging about at work or however you spend your time.  Ensuring you take these with a two hour gap between the pill and anything on the long list of foods that affect calcium could be quite a challenge as there are so many.  You think beans on toast would be fine?  No, the wheat bran is an issue, so are the beans.

Still, the NOS suggests that avoiding a vast array of foods while taking your calcium supplements is not that important.  It can be tricky figuring out which advice to trust.  It does, however, have a particular warning about wheat bran, which interests me despite the fact that I don’t eat dairy or wheat:

“Wheat bran. Like beans, wheat bran contains high levels of phytates which can prevent your body from absorbing calcium. However, unlike beans 100% wheat bran is the only food that appears to reduce the absorption of calcium in other foods eaten at the same time. For example, when you have milk and 100% wheat bran cereal together, your body can absorb some, but not all, of the calcium from the milk. The wheat bran in other foods like breads is much less concentrated and not likely to have a noticeable impact on calcium absorption. If you take calcium supplements, you may want to take them two or more hours before or after eating 100% wheat bran.”

This suggests that people, thinking they are doing a great job nutritionally, sit down to a breakfast of milk and wheat bran, when this is a particularly unhelpful combination for supporting their bone health.  The GP food questionnaires, used to see if you eat enough calcium, don’t take these combinations into account, nor do they know how to cope with vegan/vegetarian diets (or at least the person I saw could give no alternatives when I said I ate no dairy)

The calcium supplements I have been prescribed do say not to eat them within four hours of taking the alendronic acid. I wrote an earlier blog about the impact of the calcium in water on the absorption rates of the drug- which is why the advice says tap water only not mineral water.

All these things make it harder for people to timetable doses well.  I check these issues to enable me to maximise the benefit of anything I take.  I’m curious to know which of the many possible reasons for not taking medications prescribed for osteoporosis are the ones that really matter to people, reducing ‘compliance’.

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keeping your back straight

I’ve been working hard to learn to move with my back straight.  I knew that forward bending was something to avoid –  small fractures in the front of the spine lead to more fractures– a cumulative process that is hard to stop once started.  I had thought it was ok to bend backwards, and have been doing this everyday as part of a modified balance exercise on the Wii.

I just found this diagram on the National Osteoporosis Foundation website: back straight

Looking through the ‘Yoga for Osteoporosis’ book by Loren Fishman and Ellen Saltonstall I see they don’t include poses with back bending.  They do have something called ‘Upward Bow’ (Urdhva dhansurasana) (p122) but is for prevention only.  The other poses come with three variations for those preventing osteoporosis, for those with osteopenia (at risk bones) and those who already have fragile bones.

If anyone has ever watched an infant get frustrated at being trapped in a car seat – I can empathise.

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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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Hooray for onions

For those of you looking to improve bone health by changing diet, an article I found on eating onions looks interesting.  Women who ate onions every day had higher bone density than those who ate them infrequently.  Those who ate onions frequently had a 20% reduction in the rate of hip fracture.

High doses of herbs such as sage inhibit bone resorption in rats- so what about sage and onion stuffing as a regular item on your plate.

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Vitamin D – not enough, too much or just right?

The calcium pills I am now prescribed contain Vitamin D.  If you don’t have Vitamin D you don’t absorb the calcium.  If you are lucky and live in a sunny place and can actually get out in the sunshine with some bare skin you can make your own- the closest we come to being like plants, making their food from sunshine.

Living in the UK there just isn’t enough sunshine for much of the year, and in the winter sunny days are too cold to run around naked for a couple of hours at lunchtime.  I used a calculator made available by the Norwegian Institute of Air Research to see how much exposure I’d need outside today (gloomy weather, and guessing a few factor like the ozone level) and got this result:

Recommended UV exposure of face, hands and arms at least every other day to obtain sufficient vitamin D, equivalent of 25 micrograms vitamin D, if no dietary vitamin D is available:
Processing … (this may take a minute)Done
Output:
minimum recommended exposure time (hours:minutes)
24: 0

So I’d need to be outside from dawn to sunset everyday to get anywhere close to the exposure levels- and that is giving myself a day length of twelve hours, which is longer than we have at the moment.  At least that doesn’t say naked, just exposing hands and arms and face.  It didn’t have a box for ‘how much clothing are you going to wear’.

Rickets, which you get from a deficiency of Vit D, used to be very common – with an estimate of 90% of northern European children having rickets in the early 20th C. With less Vit D you absorb less calcium, and the body takes what it needs for other functions from the bones.  Softening of the bones leads to leg bowing in kids.  The harder bones of adults don’t show this bending of the bones, but you can get general bone aches and fatigue as a sign. (the chapter by M Holick I took this from is very interesting if you want to read more about the many aspects of Vit D).

I was surprised to see that the NHS says infants (unless formula-fed) and children up to age 5 should have Vit D supplements everyday, and also pregnant, breastfeeding, housebound and over 65’s should supplement their diet. The MS UK website says older people make less Vit D as their skin is thinner.  Osteoporosis Canada recommends routine vitamin D supplementation for all Canadian adults year round due to their northern climate.

The relationship of Vit D with calcium is a complex one.  Understanding how they interact seems like an important aspect of managing bone health for people like me with osteoporosis. The NHS website states:

Taking too many vitamin D supplements over a long period of time can cause more calcium to be absorbed than can be excreted.
The excess calcium can be deposited in and damage the kidneys. Excessive intake of vitamin D can also encourage calcium to be removed from bones, which can soften and weaken them.

So, if you take too little you can get rickets, which gives you bone pain and deformities.  If you take too much you can wreck your kidneys and give yourself weak bones.  Some studies suggest that Vit K can help keep the calcium in the bones and out of the arteries when used in higher doses than we would normally get through food.

So how much is enough and how do you tell if that is what you are getting? The NHS website says not to take more than 25 micrograms a day.  My prescription pills give me 20 micrograms a day.  I’ve had a blood test to check that this is ok (and heard nothing so presume it is ok) and assume that I’ll get this tested every now and then to be sure I’m not ruining my kidneys.

There seems to be some disagreement on the appropriate levels, with the levels described here being considered much to low by some practitioners. RDAs are based on the levels people need not to be ill, rather than optimal health, so vitamin proponents often say RDAs are too low for people trying to address associated issues.

Vitamin D is fat soluble, and can be stored in the body.  So, if you miss a pill one day you can top up by taking two the next.  I wondered if that meant I should take my pills with a fatty meal, but research on absorption tested by blood plasma levels shows it isn’t important you absorb a bit more with a low fat meal versus either fasting or a high fat meal, but there isn’t a difference in the blood plasma levels in the longer term.  Some types of calcium should be taken with a meal (calcium carbonate), the others can be taken any time.

You can get your Vit D from fortified dairy products( which as a person with lactose intolerance I don’t eat), fatty fish (Yuk!) or, interestingly, mushrooms which are grown under ultraviolet light.  I bought some of those the other week as I spotted them in the supermarket; I had wondered how they came to have more Vit D.  I’m not too sure about eating mushrooms, I sometimes feel a bit glutened after eating them, and they can be grown on grain which leads to a low level of contamination.  The pills seem safer.

It does seem that Vit D might also help with depression– so being in sunshine might cheer you up for that reason too.  It is certainly a lot easier to take a Vit D supplement than hae sunny holidays throughout the winter, however attractive that might be as a proposition.

So what about Vit K?  You get it by eating your dark leafy greens and eggs. Its role in treating osteoporosis is, apparently,  controversial. Some studies suggest that higher Vit K levels reduce osteoporosis, others don’t.  One interesting new bit of information for me is that our gut bacteria manufacture Vit K.  Vit K looks like a complex enough issue that it will need its own investigation.  However, if you have a poorly performing gut (like in Chrones or coeliac disease) you are less likely to absorb Vit K, and when I still ate gluten I got bacterial gut and respiratory tract infections a lot, so took antibiotics these antibiotics would have killed off my VIt K producing bacteria as well as the harmful ones.  It seems likely I would have been Vit K deficient for quite some time and that wouldn’t have helped my bone health.  The Coeliac Society says “the malabsorption that occurs in untreated coeliac disease can lead to multiple nutritional deficiencies. The most common nutritional problems in people with coeliac disease include deficiencies of essential fatty acids, iron, vitamin D, vitamin K, calcium, magnesium, folic acid and zinc.”

The National Osteoporosis Society has these recommendations about VIt D (abbreviated)

“Key recommendations

  • Measurement of serum 25OHD is the best way of estimating vitamin D status.
  • Serum 25OHD measurement is recommended for:

* patients with bone diseases that may be improved with vitamin D treatment
* patients with bone diseases, prior to specific treatment where correcting vitamin D deficiency is appropriate

* patients with musculoskeletal symptoms that could be attributed to vitamin D deficiency.

  • Routine vitamin D testing may be unnecessary in patients with osteoporosis or fragility fracture, who may be co-prescribed vitamin D supplementation with an oral antiresorptive treatment.
  • In agreement with the Institute of Medicine (IOM), we propose that the following vitamin D thresholds are adopted by UK practitioners in respect to bone health:

O serum 25OHD < 30 nmol/L is deficient
O serum 25OHD of 30–50 nmol/L may be inadequate in some people
O serum 25OHD > 50 nmol/L is sufficient for almost the whole population.

  • Oral vitamin D3 is the treatment of choice in vitamin D deficiency.

(occasionally up to 4,000 IU daily), given either daily or intermittently at higher doses.

  • Adjusted serum calcium should be checked 1 month after completing the loading regimen or after starting vitamin D supplementation in case primary hyperparathyroidism has been unmasked.
  • Routine monitoring of serum 25OHD is generally unnecessary but may be appropriate in patients with symptomatic vitamin D deficiency or malabsorption and where poor compliance with medication is suspected.”

So, this is all more complicated than I expected.  It’s going to take me quite a while to unpack all the research on Vit D and its relationship with calcium absorption and use in the body, and any role Vit K has in this equation.

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