Trying to Muddle Through: Living (and Learning) with Disease

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DISCLAIMER: EVERYTHING THAT FOLLOWS IS SIMPLY A TALE OF MY OWN EXPERIENCE. IT IS NOT A SUBSTITUTE FOR GOOD MEDICAL ADVICE.

Last year I wrote about why there is no good name for the illness that afflicts me. Of the two alternatives, Reactive Arthritis is the better but, as I wrote back then, when people hear the word ‘arthritis’ they think joint pain – and that’s only half the story. Exhaustion, skin problems, eye problems, and mild fevers have all accompanied my ‘arthritis’ at one stage or other. Heck I’ve even had painful stores on the inside of my nose. Even on its own, joint inflammation has been enough to hobble me – reducing me to crutches at times – but, add to this everything else associated with the illness and, hey presto, you’ve got a life where, when the disease it at its worst, simple things like driving to the library can be near-impossible.

This isn’t a cry of self pity on my behalf: things could be much worse. (Indeed, I’ve got friends for whom they are much worse.) All I’m saying is that there has been quite a change in my life since the carefree, globetrotting, surfing days of my 20s.

Naturally enough I haven’t taken this lying down. I’m lucky enough to come from a relatively wealthy family, meaning that I am in the position where – within reason – if I come across a potential treatment pathway, I can afford to follow it. I’m also reasonably well-educated, with access to the internet meaning that I can supplement the knowledge of the medical professionals I see with my own research.

So right from the moment – sometime over the summer of 2002/03 – when it looked like I wasn’t going to shake the second bout of arthritis as easily I had the first (which came and went of 1999), I started to take an active role in overcoming my illness. Or, at least, in attempting to overcome my illness.

Since then the ride has been up and down.

In late-summer/autumn of 2003 I got much better; over the winter much worse. I improved again over spring 2003, but relapsed very badly in December 2003. For the next year, until late 2004, my life was pretty severely limited by illness. I did manage to complete my masters degree (including a research component in Brazil), but by the end of this process I was knackered – on crutches, in pain and fatigued. And for the whole year I couldn’t surf: something that might sound frivolous but surfing’s been central to my life ever since I was 13 and it’s something I really value; so in many ways it’s my yardstick of wellness.

Over the summer of 2004/05 I got somewhat better. I was freed from my crutches, and able to surf again. And generally found life much easier to live. I was far from rid of pain though, and not even as good as I had been in 2003, but I was mobile enough to live a relatively normal life. Or I was up until June 2005 when, probably due an ear infection I caught surfing, I relapsed big time. By far and away the worst my arthritis had been – out of the water, back on crutches, and taking strong medication on top of this just to be able to get around.

From this low point things started to slowly and shakily get better; the rate of improvement increasing dramatically in early 2006 when I changed treatment regimes (more about this later). Which leaves me, at present, well enough to surf again. And – for the first time since 2002 – able to go for recreational walks. This is great: I’m not out of the woods, but the foliage has thinned. And I can see some daylight between those trees.

The journey here has been far from straightforward. Along with the twists and turns in the level of illness there have been different treatments taken, bifurcations, and dead ends. Here are some of the paths I’ve investigated, what I’ve learnt, and the pitfalls…

Mainstream Medicine

The wonders of modern medicine never cease to amaze me – in the space of just a few hundred years it has contributed to a staggering rise in life expectancy. It has provided us with the means to eradicate small pox and almost rid the world of polio. Its achievements mean that if you were to catch the Black Death on holiday in Mongolia, on returning to New Zealand you would – rather than being responsible for wiping out a third of our population – be cured with a nice easy course of antibiotics.

Mainstream medicine hasn’t, however, managed to come up with easy answers to all the diseases that ail us. And, unfortunately, Reactive Arthritis is one of those diseases where there is, as yet, no cure. Instead, there are a variety of potential treatments that may work to an extent but which also come with costs of their own (side effects). This means that there are tradeoffs to be worked through.

My first brush with conventional medicine came as I limped my arthritic way around Charring Cross Hospital in London (1999). There – a misdiagnosis at the GUM clinic and a bad experience in ophthalmology not withstanding – I received excellent treatment. The doctors in Rheumatology were great; they didn’t do much other than prescribe Non Steroidal Anti-Inflammatories and drain the fluid – ow! – off my knees; but the disease started to trend for the better pretty quickly and what they excelled at was helping me learn about the condition – and treating me like a human being. Which, particularly in a big dehumanizing city like London, meant something.

My second brush was back here in New Zealand (2002/03) where I – after waiting for several months for an appointment with a registrar – had a fairly brief appointment, during which the consultant was called in and in which I was prescribed Methotrexate, given an A4 handout informing me about the drug, directed to the door and told to come back in 6 months. Within an hour of getting home I discovered enough about Methotrexate to make me decide not to take it. Methotrexate is an immunosuppressant which can have considerable side effects. Can doesn’t mean will. And Methotrexate also has a reasonable track record when it comes to significantly reducing the effect of arthritis. Yet, at that point in time, where I’d only been badly arthritic for a couple of months and given my previous experience, in which I got significantly better after a few months whilst doing nothing in particular, I thought that taking such strong medication was jumping the gun just a little. My confidence wasn’t boosted by the fact that the doctors forgot to schedule me the regular blood tests which are critical in detecting if any damage is being done when taking Methotreaxte. So, I never took the Methotrexate.

And began considering the alternatives.

Richard Dawkins (I think) once wrote about alternative medicine that (paraphrase), “once an alternative medicine is proven to work, it’s no longer alternative, it becomes part of the mainstream.”

If only things were that simple. The scientific method that Dawkins champions and which is central to mainstream medicine has much to be said for it. Logic, cause and effect, evidence, double blind trials – we take these for granted but each represents a small revolution in its own right. And a vast improvement on what came before. Yet there are limitations to the process.

The first is economic: developing a treatment and getting it tested thoroughly costs – a lot. This means that the type of treatments more likely to make it into the mainstream are those where money can be recouped through patents. That means drugs – as opposed to things like diets. The economics of medicine also means that the large drug companies that develop many modern medicines, having sunk considerable costs into their development, are loath to see a medicine ruled out at the last minute when it fails to prove efficacy in double bind trial or shows adverse side effects. And this in turn means that drug companies often find ways of increasing the chances that the studies they pay for produce the results they want.

According to Richard Smith, a former editor of the British Medical Journal:

Paula Rochon and others examined in 1994 all the trials funded by manufacturers of nonsteroidal anti-inflammatory drugs for arthritis that they could find [7]. They found 56 trials, and not one of the published trials presented results that were unfavourable to the company that sponsored the trial. Every trial showed the company's drug to be as good as or better than the comparison treatment.

In the same article Smith refers to other meta-studies (studies of studies) which found similar skewing – drug company funded trials producing more favourable results than independent trails etc.

It’s important to remember here that not all medical studies are funded by drug companies – the majority are in US journals, but not in the British Medical Journal – and it’s also important to restate that, even studies produced by medical companies are often accurate. However, the economics of the process does mean that the scientific method, which as an ideal is certainly the best way to assess treatments, becomes somewhat tainted by the reality on the ground.

Compounding this is the inherent conservatism that comes with the scientific method: science requires that something be proven before it is accepted as truth. And that’s fine – this is the scepticism that has rid us of leaching and alchemy. Yet there’s a quasi-sociological component to this scepticism too, I think. Something which means that for experts in a field, an element of self-worth becomes attached to defending the existing consensus against new ideas. No longer is reason the reason for people’s scepticism – emotion plays an active role. I don’t want to overstate this, I think it’s much less prevalent than in the social sciences (where I have some experience). Yet the history of science – and scientists who have been ostracised until they were eventually accepted as correct – shows that this really is a problem, at least in the short term. In the long term, usually, the strengths of the scientific method mean that the truth prevails – eventually. This isn’t much use if you are sick now though.

Which brings me back to Dawkins’ quote – what if there is an alternative treatment out there that might cure Reactive Arthritis but which hasn’t become mainstream yet because, say, it can’t be patented, and so money can’t be made off it? Or because it simply hasn’t been round long enough to win over the mainstream?

Alternative Medicine

It’s this ‘what if’ that led me to try several alternative treatments – dietary supplements, homeopathy, iridology – and to consider others. None of these alternatives had any of the potential adverse side effects of Methotrexate, nor did they – as far as I can tell – help with my illness. To be fair to the alternatives one of the things the iridologist prescribed – eliminating gluten from my diet – is similar to something I am doing at present, and I may not have tried the other alternative remedies for long enough.

There is a good reason why I didn’t persist with the alternative remedies for that long though – their cost. None of the alternatives were cheap. And while it’s fair to say that, with most alternative remedies, even if they don’t work they probably don’t do much harm (unless you are duped into taking them instead of conventional medicine and then are harmed by the disease), they certainly cost. Which means that – when they don’t do what they claim to do – their continued sale is basically a consumer rip-off. And this brings me to the main limitation of alternative medicine. While their being freed from the rigours of having to be tested forever until the scientific establishment is won-over means that their might be alternative treatments out there that can do things that conventional medicine can’t, it also means that there are a whole heap of alternative remedies out there that make claims that simply can’t be backed up. Whether this is the result of the people who produce these remedies genuinely wanting to believe or simply the rip-off instincts of snake-oil salespeople I don’t know – I suspect the former more often than the latter, but the main point is that my experience with alternative remedies is that they have typically failed to live up to the certainty of efficacy expressed by their practitioners and by product advertising. This doesn’t mean that they will never work for you, just that an element of scepticism is best brought with you when travelling down the alternative road. This may compensate for the lack of scepticism that you will find amongst your fellow travellers.

Side Stream Medicine

For suffers of Reactive Arthritis, mainstream medicine and alternative medicine aren’t the only places to go in search of a cure. There’s a third alternative: something which I’ll call side-stream medicine.

[SPECIAL DISCLAIMER: The next few paragraphs are represent an area of my understanding that is limited – please don’t take them as gospel]

As the name suggests, Reactive Arthritis almost always occurs as a ‘reaction’ to another (trigger) illness. Typically these trigger illnesses take the form of bacterial infections (although viruses can be involved too). Most of the bacterial infections are common diseases which most people catch and never experience any symptoms other than those associated with the immediate infection (vomiting, diarrhoea etc). However, a small proportion of people who catch these triggers go on to experience the symptoms of Reactive Arthritis. This occurs – usually – because their bodies contain a particular antigen (Human Leukocyte Antigen B*27) [or at least the genetically encoded predisposition to create this antigen – I’m not 100% sure]. The combination of trigger illness and antigen is typically what leads to the subsequent arthritic episodes (I say typically because, as I understand it, occasionally people get Reactive Arthritis while not having the antigen).

The relationship between the antigen and the trigger, and the illness is not fully understood, as I understand it. Most mainstream medical professionals believe that a combination f antigen and trigger lead to Reactive Arthritis through an auto-immune process . An auto-immune process being, in lay-persons terms, your immune system ‘freaking out’ and ‘attacking’ otherwise healthy parts of your body. So in the case of Reactive Arthritis, according to most medical professionals, the only problem with your joints is that your immune system – confused in some way by a combination of antigen and trigger illness – thinks there’s a problem with your joints, and starts ‘attacking’ them, which causes the inflammation.

There is, however, a minority view amongst medical professionals (our side-stream). These side-streamers believe that there is something wrong with your joints, something vaguely akin to an ongoing infection in them. And that your immune system isn’t malfunctioning – it’s trying, ineffectively, to rid the inflamed part of your body of foreign organisms. These foreign organisms may possibly only be fragments of the initial bacteria.

Why does all this matter? It matters because it affects how you treat the disease. If you believe that it an autoimmune illness, then you will treat the disease with Methotrexate, or something similar, which impedes the erroneous immune response. However, if you believe that something along the lines of ongoing bacterial presence is the problem then you’ll want to try something different. Most probably diet and long-term low dose antibiotics.

My first experience with the ‘side-stream’ approach was through a local rheumatologist who I went and sought treatment from outside the public health care system. He was recommended to me by friends of my mother, one of whom he had treated for Fibromylagia (I think). His recommendation for me was eliminating grains from my diet as well as to start taking minocyclin, sulfasalzine, and – later – clindomycin. (The antibiotics in relatively low doses).

I think, as much as anything else I chose the side-stream approach because it offered some hope of a cure, rather than just suppressing inflammation for the rest of my life.

The initial results, taking the medication prescribed by this Rheumatologist (I put the diet in the too hard category, initially, and kept on eating as I pleased) were good – not a cure but a dramatic improvement in my quality of life. Slowly, however, it seemed like my body adapted to the drugs and things became less effective. And eventually, the rheumatologist ran out of bright ideas. And suggested methotrexate.

Serendipity

Purely by chance at about the same time, as one particular side-stream seemed to be mergeing back into the main current, I was introduced to the friend of a friend – a chap who had suffered from reactive arthritis but had seen his condition dramatically improve after seeking treatment in Melbourne from a naturopath and GP who worked together. He was the first person I’d met with Reactive Arthritis, his experience with the illness was similar to mine, and his experience in Melbourne once again provided me with hope of an alternative and cure. So off to Melbourne I went.

My experiences with the doctor/gp there were – at a personal level – kindof difficult (the subject for a future blog post). But the main thing was the treatment they suggested – eliminate all grains but rice from my diet, eliminate dairy from my diet, several new antibiotics – has, apparently, led to my most recent dramatic improvement. I say apparently because it is possible that my illness has gone into spontaneous remission over the same period of time (possible but probably not likely). At present, at least, my muddling through appears to have worked (somewhat).

So What Have I Learnt Thus Far

1. It pays to learn up on your illness and prospective treatments. An element of self-empowerment will help you decide what’s best for you. It will also make you feel better (I know for me some of the lowest emotional states in the course of my illness occurred at the beginning when I really didn’t know what was happening to me). Where there are treatment options it may also assist you in choosing what is best for you. Having said all that, there are people who dedicate their medical careers to learning this stuff (rheumatologists in my case). It’s worth listening to what they have to say (even if not 100% uncritically).

2. The Internet – I could never get it to live up to its promise when it came to leaning. It had lots of stuff from medical dictionaries, and some alternative remedies (lots of promises and costly stuff for sale). I was never able to find the main thing I wanted – other sufferers’ experiences and what worked for them. That being said I’m not a patient searcher.

3. Alternative Remedy Schmemedy. I’ve lost count of the number of people I’ve spoken too and websites I’ve read which portray natural herbal remedies as nice healthy, bound-to-succeed alternatives to mainstream medicine. Bollocks. I’m not saying that alternative remedies have nothing to offer. The big one that seems to work for me is diet. However, they aren’t a panacea. And the silly dichotomy that you often hear – western medicine bad, alternatives good – is simply wrong.

4. Don’t underestimate the psychological impacts of chronic illness. This is the topic for another post really but for now I’ll just point out that debilitation is hard work mentally as well as physically. That probably sound like stating the obvious, but it came as a surprise to me.

5. What if, what if… What if I’d started taking methotrexate right from the start? I might have spent the last few years mostly symptom free. I might have been hamstrung by side-effects. I might have been trapped into dependency on a drug that was slowly damaging me. In not taking it I may have led to my joints being permanently damaged as a result of ongoing inflammation. These trade offs aren’t easy, and I’d be sceptical of anyone who told me that they didn’t exist.

6. Meeting your fellow sufferers is well worthwhile. Don’t blindly follow their advice, of course, what works for them may not work for you. Nevertheless, no one else will have the same intimate relationship with your disease as your fellow sufferers.

7. Always keep searching.

8. Don’t be surprised if it is hard to find the time to devote to overcoming your disease. Just dealing with it, on top of all the pressures of modern life, will take time enough.

9. If you have Reactive Arthritis and want to learn more about the treatments/practitioners I’ve mentioned please email me (following carefully the advice besides the words email me up at the top right of the blog).

10. These people are supposedly the centre of the antibiotic arthritis treatment movement: http://www.roadback.org/ . Have a look (I have to admit I haven’t yet – I have read their book though).

That’s all I can think of for now.