Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:0
Lethargy: 0
Best I've felt for ages. Not sore, not sick, not tired. A trace of a grin on my little face!
Also, I have now come off the Diclofenac completely. As that stuff bores a hole in your gut I'm pleased to have left it behind. I tried cold turkey but that didn't quite work so I experimented with the dosage of mefenamic acid (Ponstan) to ease the pain. 50mg morning and night seems to do the trick. So I have the sulfasalazine and the steroid injection and the Ponstan. Between them they're doing the business.
All my limbs are in pretty good shape today, all my fingers are working just fine. So it's off to the gym this morning for some torture!
But first I have a biggish todo list to take care of.
Tuesday, 27 April 2010
Thursday, 22 April 2010
Needlework
Scorecard(0-10)
Legs:0
Shoulders:1
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:2
Lethargy: 0
I attended an arthritis clinic yesterday. I explained that although my other joints had responded quite well to the sulfasalazine and/or the diclonfenac the problem with my shoulders remained, sometimes quite acutely. I wondered if we might be looking at two separate issues: an auto immune problem affecting my legs and a possible mechanical problem with the shoulders, which might be revealed under some form of imaging.
I probably made my pitch in the wrong place because the best the clinic could offer was another steroid injection and refer possible imaging further up the chain. I was happy to accept the injection as the one I had in January had given me a full two weeks of complete relief and several weeks of relief in my knee. They injected my right shoulder. I assume they can only treat one site at a time.
I also mentioned the side effects of the sulfasalazine but it looks like there's not a lot we do there. There is the possibility that these will abate when my system gets used to the drug.
I didn't take the mid day or evening dose of diclonfenac yesterday to see if the steroid injection alone would reduce the inflammation and discomfort. I guess something is working because I don't have the pain levels I'd normally associate with dropping the diclo. It hasn't been the panacea that the January injection proved to be when I hoppled into the hospital and skipped out but everything is quite manageable today. I got a good night's sleep, something that has eluded me for several months as I haven't been able to rest on any one shoulder for any length of time. And if I sleep on my back, my wife tells me, I snore like an elephant being strangled by a pride of incompetent lions. An arrangement which she quickly terminates.
So it's difficult to know what to make of things today. Maybe the injection helped. Maybe the sulfasalazine is beginning to work. Too early to tell.
In the meantime, soldier on!
On the positive front I was quite busy yesterday from about 7am to 10pm and got through without feeling fatigued or a working nap! So maybe the lethargy is just a function of not doing a lot.
Legs:0
Shoulders:1
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:2
Lethargy: 0
I attended an arthritis clinic yesterday. I explained that although my other joints had responded quite well to the sulfasalazine and/or the diclonfenac the problem with my shoulders remained, sometimes quite acutely. I wondered if we might be looking at two separate issues: an auto immune problem affecting my legs and a possible mechanical problem with the shoulders, which might be revealed under some form of imaging.
I probably made my pitch in the wrong place because the best the clinic could offer was another steroid injection and refer possible imaging further up the chain. I was happy to accept the injection as the one I had in January had given me a full two weeks of complete relief and several weeks of relief in my knee. They injected my right shoulder. I assume they can only treat one site at a time.
I also mentioned the side effects of the sulfasalazine but it looks like there's not a lot we do there. There is the possibility that these will abate when my system gets used to the drug.
I didn't take the mid day or evening dose of diclonfenac yesterday to see if the steroid injection alone would reduce the inflammation and discomfort. I guess something is working because I don't have the pain levels I'd normally associate with dropping the diclo. It hasn't been the panacea that the January injection proved to be when I hoppled into the hospital and skipped out but everything is quite manageable today. I got a good night's sleep, something that has eluded me for several months as I haven't been able to rest on any one shoulder for any length of time. And if I sleep on my back, my wife tells me, I snore like an elephant being strangled by a pride of incompetent lions. An arrangement which she quickly terminates.
So it's difficult to know what to make of things today. Maybe the injection helped. Maybe the sulfasalazine is beginning to work. Too early to tell.
In the meantime, soldier on!
On the positive front I was quite busy yesterday from about 7am to 10pm and got through without feeling fatigued or a working nap! So maybe the lethargy is just a function of not doing a lot.
Tuesday, 20 April 2010
Weird
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:3
Lethargy: 1
Very strange start to the day. Almost completely pain free. First time in ages. Since January maybe. Able to rotate both shoulders, no pain in the knee and the swelling almost gone as well. With arthritis you get used to having some pain all the time so this is cause for celebration. I can generate slight twinges in the bicep areas of my arms if I strain them by lifting or stretching but I quickly learned how to avoid that.
Wonder what the cause of this sudden relief might be? I've stepped up the gym to four times a week. I'm not doing any arm work but there is some incidental working of the arms in the likes of the rowing machine and the cross trainer. Still, I think this is unlikely to account for a general improvement.
More likely is that the sulfasalazine might be fully kicking in now. Every silver lining has a cloud and my new pain free state is accompanied by a raised level of nausea so I suspect the two events are connected. Again, nothing I can't live with.
I've put this to the test by dropping the morning dose of diclofenac today. I've read so many horror stories about this drug and it ulcerating the bowel that I can't wait to either get off it altogether or get it swapped for the more benign Ponstan, even at a higher dose. If my theory is wrong then I'll have a familiar return of the grips in my shoulders by tea time.
Such is life!
Legs:0
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:3
Lethargy: 1
Very strange start to the day. Almost completely pain free. First time in ages. Since January maybe. Able to rotate both shoulders, no pain in the knee and the swelling almost gone as well. With arthritis you get used to having some pain all the time so this is cause for celebration. I can generate slight twinges in the bicep areas of my arms if I strain them by lifting or stretching but I quickly learned how to avoid that.
Wonder what the cause of this sudden relief might be? I've stepped up the gym to four times a week. I'm not doing any arm work but there is some incidental working of the arms in the likes of the rowing machine and the cross trainer. Still, I think this is unlikely to account for a general improvement.
More likely is that the sulfasalazine might be fully kicking in now. Every silver lining has a cloud and my new pain free state is accompanied by a raised level of nausea so I suspect the two events are connected. Again, nothing I can't live with.
I've put this to the test by dropping the morning dose of diclofenac today. I've read so many horror stories about this drug and it ulcerating the bowel that I can't wait to either get off it altogether or get it swapped for the more benign Ponstan, even at a higher dose. If my theory is wrong then I'll have a familiar return of the grips in my shoulders by tea time.
Such is life!
Monday, 19 April 2010
Curiouser and curiouser
Scorecard(0-10)
Legs:0
Shoulders:2
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:2
Lethargy: 2
I had my April blood tests on Thursday. I learned that my March test results were more or less normal with no reduction in the white blood cell count (this is one of the things which has to be watched with sulfasalazine as it renders you increasingly liable to infection.)
This week I have a clinic where I aim to bottom out once and for all whether to continue with the sulfasalazine.
At the weekend I had a gym work out on Saturday, which caused my left knee to swell a bit. Undeterred, I had two forty minutes walks on Sunday, after which the swelling disappeared. Explain me!
Legs are feeling pretty good today. I'm off to the gym again shortly. Exercise seems to help generally. My shoulders and upper arms are a little bit nippy but nothing I can't live with.
Legs:0
Shoulders:2
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:2
Lethargy: 2
I had my April blood tests on Thursday. I learned that my March test results were more or less normal with no reduction in the white blood cell count (this is one of the things which has to be watched with sulfasalazine as it renders you increasingly liable to infection.)
This week I have a clinic where I aim to bottom out once and for all whether to continue with the sulfasalazine.
At the weekend I had a gym work out on Saturday, which caused my left knee to swell a bit. Undeterred, I had two forty minutes walks on Sunday, after which the swelling disappeared. Explain me!
Legs are feeling pretty good today. I'm off to the gym again shortly. Exercise seems to help generally. My shoulders and upper arms are a little bit nippy but nothing I can't live with.
Tuesday, 13 April 2010
One in a thousand
Scorecard(0-10)
Legs:2 - (left knee:4)
Shoulders:2
Wrists & Thumbs:2
Ankles & Toes:2
Nausea:2
Lethargy: 4
When the consultant recommended sulfasalazine to me he explained the potential side effects and said that only about one in a thousand patients suffer seriously from them. That's me. Jackpot.
I came back from Val d'Isere with only a mildly sore and swollen left knee to show for it. But while I was there it was a real difficulty at times overcoming the side effects of my daily dose. Nausea, lethargy, sore throat and chesty cold sometimes made it impossible to ski. Other days I was fine and able to ski all day.
Now that I am about seven weeks into the use of this medication the side effects seem to be getting worse. To the point that I am seriously considering asking to come off this drug altogether.
The one thing I don't seem to be getting from sulfasalazine is any pain relief. How do I know this? Well I once again tried to reduce the diclofenac dose the other day as it's been regularly pointed out to me that this drug carries with it the risk of exacerbating the underlying ulcerative colitis. So I cut out the mid day diclofenac dose yesterday and by bed time the familiar misery had set about my joints. Even joints that I'd forgotten were troublesome such as those in some fingers.
I got up about 1am to take an extra dose of diclofenac and took my regular dose at 6am. Four hours later most of my discomfort has gone again. If only we could find something to counteract the inflammatory effect of the diclofenac I'd happily stay on it for ever as it does seem to give practical relief.
It seems like ages since I last felt cheery. I remember a brief spell of being virtually symptom free just after the steroid injection and a smile returning to my face. Since starting on the hated sulfasalazine a cloud of pessimism, nausea, lethargy seems to have gathered above me with no sign of shifting.
I have an appointment at the clinic next week when I'll raise all these moans with the doctors.
Legs:2 - (left knee:4)
Shoulders:2
Wrists & Thumbs:2
Ankles & Toes:2
Nausea:2
Lethargy: 4
When the consultant recommended sulfasalazine to me he explained the potential side effects and said that only about one in a thousand patients suffer seriously from them. That's me. Jackpot.
I came back from Val d'Isere with only a mildly sore and swollen left knee to show for it. But while I was there it was a real difficulty at times overcoming the side effects of my daily dose. Nausea, lethargy, sore throat and chesty cold sometimes made it impossible to ski. Other days I was fine and able to ski all day.
Now that I am about seven weeks into the use of this medication the side effects seem to be getting worse. To the point that I am seriously considering asking to come off this drug altogether.
The one thing I don't seem to be getting from sulfasalazine is any pain relief. How do I know this? Well I once again tried to reduce the diclofenac dose the other day as it's been regularly pointed out to me that this drug carries with it the risk of exacerbating the underlying ulcerative colitis. So I cut out the mid day diclofenac dose yesterday and by bed time the familiar misery had set about my joints. Even joints that I'd forgotten were troublesome such as those in some fingers.
I got up about 1am to take an extra dose of diclofenac and took my regular dose at 6am. Four hours later most of my discomfort has gone again. If only we could find something to counteract the inflammatory effect of the diclofenac I'd happily stay on it for ever as it does seem to give practical relief.
It seems like ages since I last felt cheery. I remember a brief spell of being virtually symptom free just after the steroid injection and a smile returning to my face. Since starting on the hated sulfasalazine a cloud of pessimism, nausea, lethargy seems to have gathered above me with no sign of shifting.
I have an appointment at the clinic next week when I'll raise all these moans with the doctors.
Sunday, 28 March 2010
A pattern emerges
Scorecard(0-10)
Legs:2 - (left knee:5)
Shoulders:2
Wrists & Thumbs:1
Ankles & Toes:0
Just back in from a week in Val d'Isere where I was able to ski restricted only by the fatigue associated with the sulfasalazine and my now lack of fitness. Still had some very good days on the glaciers though. Deep blue skies and perfect, light snow. Towards the resort the snow was like a pudding and was very hard work. Also, with the unseasonally high temperatures, I was severely over heating in my ski gear and this added to the sense of exhaustion.
At the end of the week I decided to find out if I still need the diclofenac drugs. I stopped taking them yesterday. And Lo! My left knee has swollen up this morning and a familiar ache has reasserted itself in my shoulders.
Now this is very similar to what developed in January after I experimented with cutting out the NSAID drug I was then using - mefenamic acid (Ponstan.)
So that now strongly suggests that all the relief I've been getting has come from the NSAIDs and the benefit of the sulfasalazine has yet to be realised.
It also makes me wonder whether there may me a mechanical explanation after all for this entire experience.
I won't have long to wait to find out. I have X-Rays on my shoulders tomorrow.
Legs:2 - (left knee:5)
Shoulders:2
Wrists & Thumbs:1
Ankles & Toes:0
Just back in from a week in Val d'Isere where I was able to ski restricted only by the fatigue associated with the sulfasalazine and my now lack of fitness. Still had some very good days on the glaciers though. Deep blue skies and perfect, light snow. Towards the resort the snow was like a pudding and was very hard work. Also, with the unseasonally high temperatures, I was severely over heating in my ski gear and this added to the sense of exhaustion.
At the end of the week I decided to find out if I still need the diclofenac drugs. I stopped taking them yesterday. And Lo! My left knee has swollen up this morning and a familiar ache has reasserted itself in my shoulders.
Now this is very similar to what developed in January after I experimented with cutting out the NSAID drug I was then using - mefenamic acid (Ponstan.)
So that now strongly suggests that all the relief I've been getting has come from the NSAIDs and the benefit of the sulfasalazine has yet to be realised.
It also makes me wonder whether there may me a mechanical explanation after all for this entire experience.
I won't have long to wait to find out. I have X-Rays on my shoulders tomorrow.
Thursday, 18 March 2010
Good day today
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:0
Today I'm as twinge free as I've been for a while. Even the left knee has loosened up and I'm now happily looking forward to skiing on it next week.
Yesterday I climbed up to the full dose of sulfasalazine, now on 2Mgms daily. I doubt that is already responsible for today's happy condition but I'm not complaining. I'm still taking the diclofenac at the moment, I'm not intending to stop that before the end of next week's skiing.
I had blood tests yesterday to see what, if any, damage the sulfasalazine has done. Hopefully none, I would prefer not to have to start a different course of drugs now with the regression that would involve, at least temporarily.
I seem to have found a way to prevent the nausea setting in too. If I wolf a large meal I pretty quickly feel queasy with it. However, if I eat a light meal slowly I seem to bypass the nausea phase. It suggests a mechanical cause for the nausea associated with my stomach expanding in response to a large meal. Maybe my liver has increased in size and things are banging into my diaphragm...
Sadly, I have to attend the funeral of Anne McHattie this morning.
Legs:0
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:0
Today I'm as twinge free as I've been for a while. Even the left knee has loosened up and I'm now happily looking forward to skiing on it next week.
Yesterday I climbed up to the full dose of sulfasalazine, now on 2Mgms daily. I doubt that is already responsible for today's happy condition but I'm not complaining. I'm still taking the diclofenac at the moment, I'm not intending to stop that before the end of next week's skiing.
I had blood tests yesterday to see what, if any, damage the sulfasalazine has done. Hopefully none, I would prefer not to have to start a different course of drugs now with the regression that would involve, at least temporarily.
I seem to have found a way to prevent the nausea setting in too. If I wolf a large meal I pretty quickly feel queasy with it. However, if I eat a light meal slowly I seem to bypass the nausea phase. It suggests a mechanical cause for the nausea associated with my stomach expanding in response to a large meal. Maybe my liver has increased in size and things are banging into my diaphragm...
Sadly, I have to attend the funeral of Anne McHattie this morning.
Wednesday, 17 March 2010
Ominous
Scorecard(0-10)
Legs:2
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:1
Most of me feels quite good today but I'm a bit concerned about my left knee. It's stiff, slightly sore and showing signs of swelling up. This is a bit like the original symptoms back in November and it's not a good sign for skiing next week. I've put a tubie-grip on to keep it warm and I'll rest it up today. If it's still bad tomorrow I'll try to make an emergency appointment with the physio at ARI to see if she can help drain or move some fluid off the knee.
It's most inconvenient because it means you can never plan anything - the knee can flare up without warning and without any obvious trauma.
Legs:2
Shoulders:0
Wrists & Thumbs:0
Ankles & Toes:0
Nausea:1
Most of me feels quite good today but I'm a bit concerned about my left knee. It's stiff, slightly sore and showing signs of swelling up. This is a bit like the original symptoms back in November and it's not a good sign for skiing next week. I've put a tubie-grip on to keep it warm and I'll rest it up today. If it's still bad tomorrow I'll try to make an emergency appointment with the physio at ARI to see if she can help drain or move some fluid off the knee.
It's most inconvenient because it means you can never plan anything - the knee can flare up without warning and without any obvious trauma.
Monday, 15 March 2010
Substitute
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
Nausea:2
Today I have very little discomfort but some continuing nausea after a quite a queasy day yesterday. The queasiness does take the shine off my mood but I suppose it's the lesser of the two evils.
I'm hopeful that it will subside as my system gets used to the sulfasalazine but the dose gets stepped up to max on Wednesday so I suppose it'll get worse before it gets better.
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
Nausea:2
Today I have very little discomfort but some continuing nausea after a quite a queasy day yesterday. The queasiness does take the shine off my mood but I suppose it's the lesser of the two evils.
I'm hopeful that it will subside as my system gets used to the sulfasalazine but the dose gets stepped up to max on Wednesday so I suppose it'll get worse before it gets better.
Saturday, 13 March 2010
Fatigué
Scorecard(0-10)
Legs:2
Shoulders:1
Wrists & Thumbs:3
Ankles & Toes:0
Extremely fatigued today after a late night of 9pm yesterday acting as sommelier for the wine tasting. Right wrist and thumb are decidedly achey after the "strain" of pouring the wines. Didn't drink any.
Also swam yesterday afternoon which may account for the legs being a bit twingey today. Left knee is slightly puffy, which is a bit of a worry for Val d'Isere in a week's time. Will rest it up for a couple of days.
In fact have no energy to do anything other than rest today. Can't believe how tired I feel but it seems to be a commonly reported side effect of the sulfasalazine. Can't even muster the resources to wash the car. It's going to be a longer road back that I had expected.
Fatigue is also a bit of a concern for next week's travel. I have to drive to Edinburgh, get a plane to Lyon then drive from Lyon to Val, a journey of at least three hours, and probably in the dark. If in doubt, park up.
Legs:2
Shoulders:1
Wrists & Thumbs:3
Ankles & Toes:0
Extremely fatigued today after a late night of 9pm yesterday acting as sommelier for the wine tasting. Right wrist and thumb are decidedly achey after the "strain" of pouring the wines. Didn't drink any.
Also swam yesterday afternoon which may account for the legs being a bit twingey today. Left knee is slightly puffy, which is a bit of a worry for Val d'Isere in a week's time. Will rest it up for a couple of days.
In fact have no energy to do anything other than rest today. Can't believe how tired I feel but it seems to be a commonly reported side effect of the sulfasalazine. Can't even muster the resources to wash the car. It's going to be a longer road back that I had expected.
Fatigue is also a bit of a concern for next week's travel. I have to drive to Edinburgh, get a plane to Lyon then drive from Lyon to Val, a journey of at least three hours, and probably in the dark. If in doubt, park up.
Friday, 12 March 2010
Uncle Dick
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
No new aches or pains to report today, thankfully. You get used to some minor levels of discomfort when performing routine activities. Brushing your teeth, combing your hair generates a twinge of two. I am better at reversing the car now although I still can't fully twist round in the seat the way I used to.
Unfortunately I'm still feeling a bit queasy after the morning dose of sulphur. I have a wine tasting tonight so I hope I feel a little better for it later on. I'm not actually drinking any of the wine, alas. I was asked by a client to act as sommelier for a corporate wine event. Presumably on the misguided assumption that my excessive consumption of wine conveys upon me some knowledge of it. I'll "nose" a few though, and pronounce solemnly on the colour. This fine red is very red etc.
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
No new aches or pains to report today, thankfully. You get used to some minor levels of discomfort when performing routine activities. Brushing your teeth, combing your hair generates a twinge of two. I am better at reversing the car now although I still can't fully twist round in the seat the way I used to.
Unfortunately I'm still feeling a bit queasy after the morning dose of sulphur. I have a wine tasting tonight so I hope I feel a little better for it later on. I'm not actually drinking any of the wine, alas. I was asked by a client to act as sommelier for a corporate wine event. Presumably on the misguided assumption that my excessive consumption of wine conveys upon me some knowledge of it. I'll "nose" a few though, and pronounce solemnly on the colour. This fine red is very red etc.
Thursday, 11 March 2010
Under control?
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
Today I have very little discomfort and the only thing that's bothering me is a continuing slight queasiness after stepping up the sulfasalazeine dose from Wednesday. Hopefully my system will get used to this and the queasiness will eventually disappear. It's the lesser of two evils though. Much rather have that that the aching joints. Still hanging in there with the doclofenac.
Have blood tests next week to see what effect the new drug is having. Must remember to get a new prescription so I don't run out in France.
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
Today I have very little discomfort and the only thing that's bothering me is a continuing slight queasiness after stepping up the sulfasalazeine dose from Wednesday. Hopefully my system will get used to this and the queasiness will eventually disappear. It's the lesser of two evils though. Much rather have that that the aching joints. Still hanging in there with the doclofenac.
Have blood tests next week to see what effect the new drug is having. Must remember to get a new prescription so I don't run out in France.
Wednesday, 10 March 2010
Clinging on to nurse for fear of something worse
Scorecard(0-10)
Legs:0
Shoulders:2
Wrists & Thumbs:2
Ankles & Toes:0
Yesterday I decided to try and reduce the diclofenac diet, missing out the mid day dose. It was what Mr Humphrey might have described as a "courageous" decision, Minister. I was duly rewarded by the closing of a hot vice around my shoulders by evening and by bed time I had already reached for the familiar bubble pack.
Sleep was again interrupted, this time at 2am, by telephone traffic from afar reacting to a local bereavement. Consequently this morning I am both a little sore and a little tired again.
Still, this is now week three of the sulfasalazine and the dose has been increased to 75% of the final level. All up I don't feel too bad, perhaps a little queasy although it might just be jet lag from the interrupted sleep.
At this rate I might think about resuming a place in the economic process after I come back from France.
Legs:0
Shoulders:2
Wrists & Thumbs:2
Ankles & Toes:0
Yesterday I decided to try and reduce the diclofenac diet, missing out the mid day dose. It was what Mr Humphrey might have described as a "courageous" decision, Minister. I was duly rewarded by the closing of a hot vice around my shoulders by evening and by bed time I had already reached for the familiar bubble pack.
Sleep was again interrupted, this time at 2am, by telephone traffic from afar reacting to a local bereavement. Consequently this morning I am both a little sore and a little tired again.
Still, this is now week three of the sulfasalazine and the dose has been increased to 75% of the final level. All up I don't feel too bad, perhaps a little queasy although it might just be jet lag from the interrupted sleep.
At this rate I might think about resuming a place in the economic process after I come back from France.
Tuesday, 9 March 2010
Progress continues
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
My sleep was somewhat interrupted by telephone calls around 11.30pm last night. This may account for feeling a little jaded this morning. Left shoulder was a bit naggy during the night if I lay on it for too long. Nothing major though.
After a shower this morning everything is working well. Hope it keeps up for Val d'Isere in ten days time!
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
My sleep was somewhat interrupted by telephone calls around 11.30pm last night. This may account for feeling a little jaded this morning. Left shoulder was a bit naggy during the night if I lay on it for too long. Nothing major though.
After a shower this morning everything is working well. Hope it keeps up for Val d'Isere in ten days time!
Monday, 8 March 2010
Capricious as the wind
Scorecard(0-10)
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
Yesterday I had what I once would have regarded as a modest hike up a nearby hill with a summit of only about 1000 feet. However, this has recently become a slightly more taxing experience.
I was laden down like a beast of burden, two cameras round my neck and a rucksack on my back. I expected to be a little uncomfortable this morning.
Not a bit of it. With bewildering unpredictability I feel as well today as I have done since the onset of this little inconvenience. Enthusiasm levels for completing chores are uncharacteristically high too!
I don't know what to put this down to. The effect of the exercise or the sulfasalazine really beginning to do its stuff - we're well into week two now. At this rate I might be able to give up the diclofenac shortly. That would be handy as it's probably been boring a hole in my stomach these past few weeks and months.
Also, there's no excuse for looking like a butter ball if I'm feeling OK. Have lost rather fewer of those 8Kgs than I would have preferred. So get your ass down to the gym sunshine!
So, much to do and let's get on with doing it!
Legs:0
Shoulders:0
Wrists & Thumbs:1
Ankles & Toes:0
Yesterday I had what I once would have regarded as a modest hike up a nearby hill with a summit of only about 1000 feet. However, this has recently become a slightly more taxing experience.
I was laden down like a beast of burden, two cameras round my neck and a rucksack on my back. I expected to be a little uncomfortable this morning.
Not a bit of it. With bewildering unpredictability I feel as well today as I have done since the onset of this little inconvenience. Enthusiasm levels for completing chores are uncharacteristically high too!
I don't know what to put this down to. The effect of the exercise or the sulfasalazine really beginning to do its stuff - we're well into week two now. At this rate I might be able to give up the diclofenac shortly. That would be handy as it's probably been boring a hole in my stomach these past few weeks and months.
Also, there's no excuse for looking like a butter ball if I'm feeling OK. Have lost rather fewer of those 8Kgs than I would have preferred. So get your ass down to the gym sunshine!
So, much to do and let's get on with doing it!
Saturday, 6 March 2010
Queasy
For the first time since I started taking the sulfasalazine I feel a little queasy this morning. Perhaps it's because it's the weekend and I don't have very much to occupy me today. If I were busy I might not notice it so much.
Although I'm still taking the diclofenac I'm hopeful that this era is coming to an end soon. The expectation I've formed of the sulfasalazine is that after it has fully taken effect I should be able to resume pretty much a normal life, perhaps with the odd twinge or two. Far from being crippled by arthritis I hope to step up the gym and the pool to something approaching their previously daily levels, and I have already arranged to go back to Val d'Isere (my spiritual home!) in March.
So, no complaints from me, all in all!
Although I'm still taking the diclofenac I'm hopeful that this era is coming to an end soon. The expectation I've formed of the sulfasalazine is that after it has fully taken effect I should be able to resume pretty much a normal life, perhaps with the odd twinge or two. Far from being crippled by arthritis I hope to step up the gym and the pool to something approaching their previously daily levels, and I have already arranged to go back to Val d'Isere (my spiritual home!) in March.
So, no complaints from me, all in all!
Friday, 5 March 2010
Back to the future
Scorecard(0-10)
Legs:1-2
Shoulders:2-3
Wrists & Thumbs:2-3
Ankles & Toes:0
After a quiescent couple of days since increasing the sulfasalazine dose to 2 x 500Mg daily I seem to have had something of a minor relapse.
What could have caused this? Well yesterday I had a photo shoot lasting about three hours. Lots of twisting and turning, crouching and stretching, and quite a bit of trudging. All with two cameras, including the very heavy Canon 5D, strapped round my neck and a rucksack on my back. My right wrist looks a little puffy today and is mildly uncomfortable. I assume that handling the 5D is the cause. The rucksack explains the shoulders, I guess.
I'm not going to be much of a photographer if I can't lift a camera!
However, onward, ever upward. Hopefully when the sulfasalazine really gets to work I won't notice these strains any more. In the meantime continuing with diclofenac three times daily.
Legs:1-2
Shoulders:2-3
Wrists & Thumbs:2-3
Ankles & Toes:0
After a quiescent couple of days since increasing the sulfasalazine dose to 2 x 500Mg daily I seem to have had something of a minor relapse.
What could have caused this? Well yesterday I had a photo shoot lasting about three hours. Lots of twisting and turning, crouching and stretching, and quite a bit of trudging. All with two cameras, including the very heavy Canon 5D, strapped round my neck and a rucksack on my back. My right wrist looks a little puffy today and is mildly uncomfortable. I assume that handling the 5D is the cause. The rucksack explains the shoulders, I guess.
I'm not going to be much of a photographer if I can't lift a camera!
However, onward, ever upward. Hopefully when the sulfasalazine really gets to work I won't notice these strains any more. In the meantime continuing with diclofenac three times daily.
Tuesday, 2 March 2010
Sulfasalazine at one week
Scorecard(0-10)
Legs:0
Shoulders:1
Wrists & Thumbs:1
Ankles & Toes:0
Today marks the end of the first week of the sulfasalazine, albeit still supported by the diclofenac at the moment. There is a clear improvement in the symptoms compared to the era of diclofenac alone. I feel very good with little restriction in movement unless I attempt something stupidly heroic such as opening the heavy garage door one handed.
I slept as well as I have done for some time. And next week the sulfasalazine dose is increased from 500Mg daily to 1000Mg daily.
I await further developments with interest, particularly as I have confirmed another skiing trip for end March in Val d'Isere, arguably the toughest skiing area there is.
Legs:0
Shoulders:1
Wrists & Thumbs:1
Ankles & Toes:0
Today marks the end of the first week of the sulfasalazine, albeit still supported by the diclofenac at the moment. There is a clear improvement in the symptoms compared to the era of diclofenac alone. I feel very good with little restriction in movement unless I attempt something stupidly heroic such as opening the heavy garage door one handed.
I slept as well as I have done for some time. And next week the sulfasalazine dose is increased from 500Mg daily to 1000Mg daily.
I await further developments with interest, particularly as I have confirmed another skiing trip for end March in Val d'Isere, arguably the toughest skiing area there is.
Monday, 1 March 2010
Arthritis? It's a breeze
Scorecard(0-10)
Legs:0
Shoulders:1-2
Wrists & Thumbs:2
Ankles & Toes:0
I had a slightly uncomfortable night but not so bad that I considered reaching for the co-codamol.
Anyway, I listened to a programme on the radio last night about paraplegia and that put my condition into context. I'm in the very lucky position of having drugs which easily make my symptoms manageable. Unlike the poor paraplegics who can do nothing for themselves, not even terminate a life which they understandably sometimes find intolerable.
So I'll get on with something useful and think myself lucky to have the chance.
Legs:0
Shoulders:1-2
Wrists & Thumbs:2
Ankles & Toes:0
I had a slightly uncomfortable night but not so bad that I considered reaching for the co-codamol.
Anyway, I listened to a programme on the radio last night about paraplegia and that put my condition into context. I'm in the very lucky position of having drugs which easily make my symptoms manageable. Unlike the poor paraplegics who can do nothing for themselves, not even terminate a life which they understandably sometimes find intolerable.
So I'll get on with something useful and think myself lucky to have the chance.
Sunday, 28 February 2010
Black night
Scorecard (0-10)
Knees:2
Shoulders:2
Wrists & Thumbs:3-4
Ankles & Toes:2-3
Just when I thought I was heading for calm waters the gremlins set in last night with a vengeance. Until now, whatever the discomfort level, movement had been necessary to trigger it. Last night, however, a static ache set about my wrists and thumbs whether I moved them or not. Made sleeping quite difficult.
After a dose of diclofenac this morning (together with the sulfasalazine) and a shower I feel a bit better but somewhat fatigued by the interrupted sleep.
I took the drugs in bed at 6am without food. As warned, I'm now feeling a bit queasy as a result. So, sick, tired and hurting! Happy Sunday.
I swam yesterday. Not particularly strenuously by my previous standards but perhaps enough to aggravate some joints. The physio suggested I'd have to find my own level of sustainable exercise. Hope that wasn't it.
Knees:2
Shoulders:2
Wrists & Thumbs:3-4
Ankles & Toes:2-3
Just when I thought I was heading for calm waters the gremlins set in last night with a vengeance. Until now, whatever the discomfort level, movement had been necessary to trigger it. Last night, however, a static ache set about my wrists and thumbs whether I moved them or not. Made sleeping quite difficult.
After a dose of diclofenac this morning (together with the sulfasalazine) and a shower I feel a bit better but somewhat fatigued by the interrupted sleep.
I took the drugs in bed at 6am without food. As warned, I'm now feeling a bit queasy as a result. So, sick, tired and hurting! Happy Sunday.
I swam yesterday. Not particularly strenuously by my previous standards but perhaps enough to aggravate some joints. The physio suggested I'd have to find my own level of sustainable exercise. Hope that wasn't it.
Saturday, 27 February 2010
Getting better
Scorecard (0-10 pain level)
Legs:0
Shoulders:1
Wrists & Thumbs:1-2
Ankles & Toes:1
Fourth day of sulfasalazine and this is the best I've felt since the steroid injection. I wonder if it's still necessary to step up the dosage over the coming weeks. I must ask. Still clinging on to the diclofenac at the moment. Hopefully I'll be able to stop this soon.
Definitely going to do a gym and pool session today. Gently though. Gently.
As promised, my urine has turned a day-glow amber sort of colour. This doesn't bother me very much. I have no strong preferences on urine colour so long as my kidneys are working properly.
So, happily I have not much to report today!
Legs:0
Shoulders:1
Wrists & Thumbs:1-2
Ankles & Toes:1
Fourth day of sulfasalazine and this is the best I've felt since the steroid injection. I wonder if it's still necessary to step up the dosage over the coming weeks. I must ask. Still clinging on to the diclofenac at the moment. Hopefully I'll be able to stop this soon.
Definitely going to do a gym and pool session today. Gently though. Gently.
As promised, my urine has turned a day-glow amber sort of colour. This doesn't bother me very much. I have no strong preferences on urine colour so long as my kidneys are working properly.
So, happily I have not much to report today!
Friday, 26 February 2010
Bad night
Scorecard (0-10 pain level)
Legs:0
Shoulders:1
Wrists & Thumbs:4
Ankles & toes:3
This is the weirdest illness. The pain seems to just wander around the body, randomly selecting places to park up for the night. Admittedly I did have to dig the snow off the drive yesterday afternoon to get the car out, so that may have something to do with the sore wrists. But if that's the case why aren't the shoulders sore too! Maybe there's only so much pain to go round.
Had some difficulty in sleeping because of the wrists and thumbs discomfort. Got up for a couple of hours and read the news online before going back to bed and more or less dozing for a few hours. I was glad to get up at 6am and start the day. I also had a sore jaw for a while about bed time but that's gone completely this morning.
After a shower it settled down to a manageable level and I am able to get on with some admin now.
Took my third dose of sulfasalazine this morning with a fruit and yoghurt smoothie breakfast. Still no discernible effect, good or ill. Also took a dose of diclofenac to keep the gremlins at bay for a while.
Legs:0
Shoulders:1
Wrists & Thumbs:4
Ankles & toes:3
This is the weirdest illness. The pain seems to just wander around the body, randomly selecting places to park up for the night. Admittedly I did have to dig the snow off the drive yesterday afternoon to get the car out, so that may have something to do with the sore wrists. But if that's the case why aren't the shoulders sore too! Maybe there's only so much pain to go round.
Had some difficulty in sleeping because of the wrists and thumbs discomfort. Got up for a couple of hours and read the news online before going back to bed and more or less dozing for a few hours. I was glad to get up at 6am and start the day. I also had a sore jaw for a while about bed time but that's gone completely this morning.
After a shower it settled down to a manageable level and I am able to get on with some admin now.
Took my third dose of sulfasalazine this morning with a fruit and yoghurt smoothie breakfast. Still no discernible effect, good or ill. Also took a dose of diclofenac to keep the gremlins at bay for a while.
Thursday, 25 February 2010
Enter the sulfasalazine
Today I took my second dose of sulfasalazine. I cannot detect any effect yet from the first dose I took yesterday. Happily, the queasiness about which I'd been warned as a possibility has not yet appeared.
At the moment I'm also continuing the diclofenac three times daily and this is keeping the symptoms down to a very manageable 1 or 2 on a discomfort scale of 10. Indeed, were it not for the bowel implications of diclofenac itself I might have simply stayed on this medication for the forseeable future.
I still seem to need a siesta most days but happily I can get by without it when I am busier.
My drugs cabinet is beginning to look like a pharmacy. In addition to the already mentioned mefenamic acid, diclofenac and sulfasalazine I've also picked up a good supply of cocodamol and paracetamol. I've only used the cocodamol very sparingly as I'm terrified of forming a dependency on the codeine element of it. When I've had to use it a dose has given pain relief for almost twenty four hours. When I explained my concerns about it to the GP she gave me paracetamol instead.
Along the way I also picked up a fair share of alternative remedies including glucosamine chondroitin, cod liver oil and cider vinegar with honey. They may well work for some folks but none of the alternatives did anything for me, though I persevered for weeks.
I have also been doing the stretching exercises recommended by the NHS physio, so far without ill effect. If the weather clears later today I may try a gym and pool session. Failing which I'll try to do a brisk walk.
I am continuing to gradually lose the extra weight I'd acquired during the worst phases of this problem. This is good!
Wednesday, 24 February 2010
In the beginning
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.
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.
Introduction and background
On 11th November 2009 I started to feel a slight twinge in the calf muscle of my left leg. I remember the date well. I had photographed a Remembrance Day ceremony in cold conditions on Sunday 8th November and on 13th November I was due to fly to China to visit my daughter who is teaching English as a foreign language there for a year.
In the course of jostling to shoot the Remembrance Day ceremony I had jumped off a three foot wall, something I would normally avoid doing because of the effects of previous skiing injuries. I wondered if I might have sustained a little tear as a result.
I exercised daily in the pool or the gym so slight muscle strains were nothing new to me and I didn't anticipate any serious repercussions. I was a fit fifty. Well fifty two actually. I'd been stable at my ideal weight (for me) of 73Kgs for some time and I was looking forward to a great skiing season. I might not have had a complete six pack but I could examine my profile in the mirror without being embarrassed.
Although I'd been diagnosed years earlier with ulcerative colitis it had been quiescent for some time and even in times of flare up it was easily controlled with drugs. It didn't get in my way at all.
I knew I'd be walking a lot in China, again in cold conditions, so I held off from the gym for a couple of days to give the muscle time to recover.
There was no indication at all that this would be the beginning of a game changer.
In the course of jostling to shoot the Remembrance Day ceremony I had jumped off a three foot wall, something I would normally avoid doing because of the effects of previous skiing injuries. I wondered if I might have sustained a little tear as a result.
I exercised daily in the pool or the gym so slight muscle strains were nothing new to me and I didn't anticipate any serious repercussions. I was a fit fifty. Well fifty two actually. I'd been stable at my ideal weight (for me) of 73Kgs for some time and I was looking forward to a great skiing season. I might not have had a complete six pack but I could examine my profile in the mirror without being embarrassed.
Although I'd been diagnosed years earlier with ulcerative colitis it had been quiescent for some time and even in times of flare up it was easily controlled with drugs. It didn't get in my way at all.
I knew I'd be walking a lot in China, again in cold conditions, so I held off from the gym for a couple of days to give the muscle time to recover.
There was no indication at all that this would be the beginning of a game changer.
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