I first began to notice a significant deterioration of my health whilst in Beijing. When I awoke in the mornings my left knee would be stiff and swollen. For the first hour of the day I would hobble around a little but generally I could walk it off and by lunchtime I would be striding out normally. The problem didn't really get in the way. I was able to do all the walking I'd anticipated, including a two and a half hour hall climb of the very steep steps of the Great Wall at Badaling, and of course the descent to follow.
At the end of the China trip my knee was moderately swollen, with attendant restrictions in the range of movement. But for most practical purposes it remained usable. I wondered if the long haul flight home would prove to be eventful but no dramas ensued and in a stop over I was able to exercise it a little by walking briskly around the terminal.
After getting home I decided to leave it for a few days to see if it returned to normal of its own accord. When there was no discernible improvement by the end of the week I decided the quickest course of action would be to have it X-Rayed so I presented myself at the local A&E one morning.
So far as X-Ray could show, there was no deterioration of the joint and the Senior Registrar was uncertain what to make of it. Could be this, could be that. Best see your GP, which I arranged to do the following week.
That first visit to the GP was not an unqualified success. I saw a locum GP whom I felt was somewhat under prepared both in terms of my history and the symptoms presented. His preliminary diagnosis was chondromalacia patella for which he recommended physiotherapy. I asked the GP to prescribe mefenamic acid in tablet form. This drug had always worked well for me in the past when I had picked up sports injuries. The expected wait of several weeks for physiotherapy persuaded me to arrange for a private session within a few days.
About this time things began to fall apart quite quickly and by the time I saw the private physiotherapist I was really struggling to walk, drive or be terribly useful around the house. In addition to my left knee being swollen and uncomfortable, the muscles in the calf and thigh of my right leg were also stiff and I had quite acute discomfort in both shoulders and mild discomfort in my right thumb.
Not surprisingly there was not a great deal the physio could do for me although she did manage to move some fluid off the knee by massage, improving the range of movement.
The continuing deterioration obliged me to seek another GP appointment as I was now having difficulty sleeping due to the discomfort in particular in my shoulders. But I was by now becoming alarmed at the lack of real progress and fairly desperate for some relief from the symptoms. I phoned a trusted pal who had recently retired from general practice.
Take this down, he said. Query Rheumatoid Factor, ESR, ANF. I mentioned this obliquely to the lovely and helpful GP I saw the following week and she agreed that this was her own suspicion. Extensive blood tests followed which did reveal a slightly raised ANF but not to a level thought to be responsible for my problems.
This coincided with the arrival of Christmas and New Year during which I endured the sometimes acute symptoms with as much good grace as I could muster. I think I began to get quite despondent during this period, beginning to assume that this must represent my life from now on. In six weeks I'd gone from being a fit fifty something with a zest for life, exercising daily, looking forward to challenging skiing in the Alps to being crippled and feeling that I had arrived on the scrap heap early. Had I done this to myself with all the gym and pool work? Was my fondness for wine now taking its toll?
Part of the despondency came from the obvious loss of fitness. I'd put on weight, 8Kgs actually, essentially a kilo per week since I'd stopped exercising and I felt horrible for it. Whereas previously I could walk all day or train for two hours in the gym, now I could barely manage a few faltering steps. I could visibly detect the muscle loss in my left leg. There were times when I decided I could not safely drive the car, which further isolated me from the household routine. Would I ever be fit again, I asked myself time and time again. I could not envisage it.
I continued to be quite fatigued by the pain. I seemed to need a nap every four hours, which was not always terribly convenient.
There followed some correspondence by telephone between the GP and myself, which resulted in her managing to obtain for me an emergency appointment at a rheumatology clinic on 7th January. I drove myself to the clinic with some difficulty and hobbled in, aided by my wife.
Normally I eschew elevators, favouring the stairs for the exercise. Today I was happy to close the lift doors behind me and press the button.
The doctors had been updated by my GP about my condition but walked me through recent events anyway. Nothing like hearing it from the horse's mouth.
They explained that today's process would involve draining the swollen left knee of fluid, performing a microscope examination of the fluid for traces of crystal that might indicate gout and finally injecting the knee with a steroid to reduce the inflammation. Fine, progress, let's go!
The aspiration and injection process was only mildly uncomfortable, a local anaesthetic having been applied in advance. After examining the drained fluid under a microscope they were able to tell me immediately that there were no indicators for gout.
I had mixed feelings about this. I was glad that I had not made myself ill through over indulgence. But I knew from the extensive reading I had done about the various possible causes of my symptoms that gout was eminently treatable, particularly in the early stages of presentation.
The effect of the steroid injection was immediate and dramatic. Magic, I'm tempted to say. I'd hobbled in but I felt I could have skipped out. That would have drawn rather a lot of attention to myself in the crowded hospital corridors so I just walked out - almost normally. Over the next two hours the symptoms in the left knee almost completely disappeared. I had to remind myself not to limp. Even more welcome, over the next twelve hours the pain in my shoulders almost disappeared too. For the first time in almost two months I felt well. My wife reported the return of a smile to my face.
Of course, I had lost a lot of muscle mass but I knew from previous injuries that this could be regained quite quickly and I began to wonder if I might even be able to ski quite soon. I set about rehabilitation exercise to rebuild the muscle, lifting, bending, stretching and swinging my legs whist wearing ski boots with weights wrapped around them. Very soon I began to feel the slight twinges which indicated that the muscles were indeed being stretched. Just what I wanted and after about ten days I was confident that I would after all be able to undertake the ski trip long planned for 30th January.
I had restarted some gentle swimming when the first set back occurred. The knee remained fine and pains in my calves and thighs were little more than I would normally experience after strenuous exercise. I could certainly live with this. But ominously, the ache in my shoulders began to reappear about twelve days after the steroid injection. And that I could live without.
I had by now committed to the ski trip. Although my legs would be fine for skiing my shoulders would not be. I made another appointment to see the GP. Normally I might see a doctor every few years for a minor complaint. This would be my third appointment in a month. Sixth if I included A&E, physio and the clinic.
I explained my predicament to the GP. If she could just let me have something to ease the discomfort enough to ski I'd be eternally grateful. I realised it wasn't a text book decision to take myself off skiing with suspected arthritis but I felt it would only get worse in the long term and I wanted to get some skiing done while I still could.
She was very good about it, saw my point of view immediately and didn't lecture me on the errors of my ways. In any case she'd been minded to change my medication from the mefenamic acid to diclofenac, a stronger anti-inflammatory pain killer (NSAID) but with a contra indication for inflammatory bowel conditions.
We also agreed that I should privately see a consultant rheumatologist as soon as I came back. So I took myself off to the Alps with the new medicaments and with the aid of a little Genepi now and again had a wonderful week skiing in the sunshine of the Three Valleys. The discomfort levels never really got above 1 or 2 at worst, sometimes zero actually, and I had no trouble in sleeping.
Almost as I walked in my front door on the evening of 7th February the phone was ringing and it was the rheumatologist's secretary offering me a consultation for Wednesday 10th.
I spent an hour with the consultant, being examined and pleasantly but forensically questioned about my family and personal health history. All in all he was able to confidently diagnose Seronegative Spondarthritis. After explaining to me the incidence of risk he recommended that I embark on a course of sulfasalazine, a disease modifying anti rheumatism drug (DMARD). I should not do this lightly, he cautioned. This was a course of treatment likely to last the remainder of my life. The effect of the DMARD would be to attack my own immune system, thought to be reacting to the underlying ulcerative colitis. In about one in a thousand cases, he explained, the white blood cell count is reduced to a dangerous level at which it is difficult for the immune system to resist infection. I'd have to have regular monitoring in the form of initially monthly blood tests. If I got a very sore throat or, heaven forfend, boils on my backside I should let somebody know and right away do you understand? The immediate alternative would be to remain dependent on the diclofenac with all the attendant bowel risks.
At the time it seemed a no brainer. A decision which made itself. On receipt of his written confirmation I again arranged to see the GP to obtain the new medication.
This coincided with another restart of the swimming. Intriguingly, I found that a combination of gentle swimming, jacuzzi and Turkish bath brought almost a day's relief from the pain in my shoulders, which remained the biggest problem. My left knee had not swollen up again and the muscle aches in both legs had abated to a point where I no longer considered them a problem.
At this point I became a little confused. Should I commit to the DMARD or try to manage the condition through exercise and baths, resorting to the NSAIDs only when the problems flared up again? Luckily I had a prearranged appointment with the NHS physiotherapist at this point and she very generously engaged in an extended discussion of the possibilities with me. Rather than admonishing me for vacillating, she encouraged me in self managing my condition, helping me to get the most out of all the possibilities. She was fulsome in her recommendation of doing as much sensible exercise as I could manage, advice which I greatly welcomed as I had much missed the strenuous exercise of the gym.
I decided I would reduce the dosage of diclofenac and gauge the result. It was difficult to make an objective decision while this drug might be masking the worst of the symptoms. I dropped one of the three tablets daily I had been prescribed.
I didn't have long to wait for the results! Next morning the familiar aches and pains in the shoulders had already set in and at that point I decided to begin the DMARD straight away.
Today, February 24th 2010, was day one of a gentle lead up to a full dose over the course of the next four weeks. So that's where I am and how I got here. In future I will post reports on the effects (and any side effects) of sulfasalazine and how my arthritic condition develops, or not as the case may be.
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