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.
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