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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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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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A late breakfast

The first line drug for osteoporosis, Alendronic Acid (fosomax) comes with very precise instructions on how to take it.   It should be taken with a large glass of water (further research says this ‘large glass’ is 200ml / 7fl oz) after getting up in the morning.  No eating in the middle of the night….they really really want your stomach to be empty.  No eating for at least half an hour after taking the pill, and stay vertical (sitting upright or standing).

These pills used to be taken everyday, and I can see that this set of instructions, seemingly so simple, would be quite a hassle with a busy life and no respite.  With the one a week dosing it is pretty simple to manage.

But why the emphasis on not taking the pills with breakfast – the easiest time of day to remember to take pills?  So easy that I discovered Bestbeloved was taking pills he shouldn’t take with meals along with all the others he has  to take in one large handful with his breakfast.

The reason we need to avoid food as that very little of the drug gets absorbed into the bones.  Most of it just gets eliminated.

This is a quote from the MRHA – the Medicines and Healthcare Products Agency

“5.2 PHARMACOKINETIC PROPERTIES

Absorption

Relative to an intravenous reference dose, the oral mean bioavailability of alendronate in women was 0.64% for doses ranging from 5 to 70 mg when administered after an overnight fast and two hours before a standardised breakfast. Bioavailability was decreased similarly to an estimated 0.46% and 0.39% when alendronate was administered one hour or half an hour before a standardised breakfast. In osteoporosis studies, alendronate was effective when administered at least 30 minutes before the first food or beverage of the day.

Bioavailability was negligible whether alendronate was administered with, or up to two hours after, a standardised breakfast. Concomitant administration of alendronate with coffee or orange juice reduced bioavailability by approximately 60%.”

So, if you eat your pill with breakfast none of the drug gets into your bones.  If you eat it up to two hours after breakfast, none of it gets into your bones.  Taking your pill with coffee or orange juice instead of plain (low calcium) water means more than half of it is wasted.

It doesn’t help that almost all of the drug passes straight through anyways, however careful you are.  Being totally careful about taking the pill, overnight fast, two hours before breakfast and with plain water, you still only get to use less than one percent (0.64%).  This is halved if you have your breakfast half an hour later, which is what the packaging says is the amount of time you need to leave between taking the pill and eating breakfast.

Question is, given that the dosing is planned around people eating half an hour later, is it bad for me to wait an hour or two to get more of the bone hardening drug into my bones or not?

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Water hardness and foolish instructions

I’ve been looking at a lot of issues around medication, posture, exercise and the psychological impact of a diagnosis of osteoporosis. One of the reasons given for poor compliance with medication (people stop taking their pills when the doctors think they should carry on) is the difficulty in coping with the specified way they have to be taken.

Note -alendronic acid or Alendronate is the generic name for this drug, Fosamax is a brand name.

“Taking alendronic acid
It is important that you take alendronic acid in the correct way, as otherwise it can cause irritation and damage as it is swallowed:

Take the tablet/medicine first thing after getting up in the morning. Take it before you eat any food or have anything to drink other than water.
You must drink a large glassful of plain water (not mineral water) as you take your dose. If you are taking tablets, swallow the tablet whole – you must not chew, break, or crush alendronic acid tablets.
It is important that you take your dose while you are standing or sitting in an upright position.
Continue to sit or stand upright for 30 minutes after taking your dose – you must not lie down during this time.
Do not have anything to eat or drink (other than plain water) during the 30 minutes after taking a dose .”  http://www.patient.co.uk/medicine/alendronic-acid-for-osteoporosis-fosamax

You’ll see it says you need to drink “a large glass of water”  – I’ll discuss what this means to the manufacturer and what it means to individuals reading it later.  I want to focus on the phrase not mineral water”.  Now, I grew up in India, where drinking water was boiled and carefully stored, so maybe I think more about water quality than many.  I also had my first job in London, where the water tasted so bad all I drank were tomato cup-a-soup as that was the only think I found that would disguise the flavour.  This predates the ready availability of water filter jugs and bottled water.

I’m also the kind of person that want to know “why not”  and “why do you think that” whenever I hear an instruction.

So why not mineral water?  It turns out that calcium in the water affects the absorption of the drug.

Calcium in water is good for your heart and bone health, and hard water is one of the major sources of calcium for many people.  Water hardness is a sufficiently big component of calcium availability that it has been recommended that GP’s should know the water hardness in their areas http://www.sld.cu/galerias/pdf/sitios/rehabilitacion-bal/how_much_calcium_is_in_your_drinking_water.pdf  .  This same report said that the manufacturers of the pills didn’t know what effect the calcium had on bioavailability of the drug so wouldn’t give a recommendation on the maximum level.

So, don’t take these pills with mineral water as it will reduce the availability and absorption of the drug.  BUT- tap water varies a lot.  Mineral water varies a lot.  I checked the calcium level of my tap water using my suppliers on-line ‘enter your postcode’ service.  I have medium hard water.  I checked the calcium level of the bottled water I keep for trips (very cheap stuff from the supermarket).  That had about one-tenth the amount of calcium in it.  I’d be better off using the mineral water rather than the tap water to take my pill.

I’m not the only one that thinks this is ridiculous.  R.Pelligrini of Bologna University wrote

 “the aforementioned formulation of the package insert is practically a nonsense, owing to the well-known huge differences among waters, both tap and mineral,”http://paperity.org/p/10789431/which-water-for-alendronate-administration

The amount of calcium in water to take the pill with should be specified, then people can make an informed choice.  I discovered that I could get calcium testing kits from the local aquarium/pet fish supply shop for a few pence a time.  I got sent a water hardness test strip with a dishwasher I bought a few years ago.  It is not difficult or expensive to test your water hardness.  Bottles of water specify their mineral content. Deciding which water to use would be easy if one knew the calcium level that didn’t compromise absorption.

Why does this matter?  People could be reducing the effectiveness of their medication by following this ruling.  If they dislike the flavour of their tap water this will make the whole process even less pleasant and possibly reduce compliance.  It also makes it feel arbitrary and controlling – instructions without clarity, a “must” without a reason.  Add to that, if you research the issue it turns out to be nonsense.  What else might one go on to mistrust?

There is also the issue of safety.  I read a query sent to an online help desk for arthritis sufferers.  The questioner said they were about to travel and how could they safely take their alendronate in places where they didn’t know if the tap water was safe to drink.  The reply was  to say tap water was safe in most European countries (the traveller didn’t say where in the world they were planning to go).  I didn’t keep a reference to that question and answer, but it has stuck in my head.  Go ahead, die of dysentery, but don’t take your pill for a long standing, possibly eventually disabling, ailment with bottled water.  Now that is a ridiculous piece of health advice.

 

 

Apologies for the references being such long links in the middle of the text.  I used Google Blogger for years and found shaping my links very easy but WordPress is defeating me for some unknown reason.  I’ll keep working on improving my knowledge and skill.

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