Hi All,
Firstly a massive apology for being away for so long.
I've been running at a hundred miles an hour ever since my little one was born in May
Since then I've also been working hard whilst simultaneously setting up my own little video and photography business.
All of the business stuff meant I was in need of a more up-to-date computer (even though my old one was only 3 years old ). So I was minus a computer for a few weeks hence no real access to the internet.
Since I last was here I've had some improvement in my SLE. Not great but a lot better My last rhumy appt was in August. I can't remember the exact figures but I was told my Anti DNA levels had gone down to about 49. ESR was about 26. And things generally were a lot better compared to this time last year.
I am still on 400mg of Plaquenil but am down to 1mg of pred, which I'm hoping to come off totally in the next couple of weeks.
I survived summer. In fact I was a lot better in the heat than I am now in the cold. I still get the occasional random joint aches but not as bad as previously. I'm getting mild chest pains/twinges, which I've been told may be costocondritis and that I shouldn't worry too much about these. But I will be chasing this up at my next rhumy appt in December.
I've been back to playing football a few times. Bar my level of fitness I survived without any major aches and pains - except when I went tumbling head first on to astro turf. That stuff is lethal :blush:
Last month I also had a surf trip and went in the water 3 times.
I hope you all are doing better. I've been reading about Benlysta and can't wait for it to get the full green light and for it to start flowing to everyone Although from what my rhumy said I may not be eligible for it due to the level of my SLE! I can't seem to figure that one out.
I had so much more to say but seem to have forgotten a lot of it Old age I think (although I've never really had a good memory any way!).
I'll try to pop in here a lot more often now.
Firstly a massive apology for being away for so long.
I've been running at a hundred miles an hour ever since my little one was born in May
Since then I've also been working hard whilst simultaneously setting up my own little video and photography business.
All of the business stuff meant I was in need of a more up-to-date computer (even though my old one was only 3 years old
). So I was minus a computer for a few weeks hence no real access to the internet. Since I last was here I've had some improvement in my SLE. Not great but a lot better
My last rhumy appt was in August. I can't remember the exact figures but I was told my Anti DNA levels had gone down to about 49. ESR was about 26. And things generally were a lot better compared to this time last year. I am still on 400mg of Plaquenil but am down to 1mg of pred, which I'm hoping to come off totally in the next couple of weeks.
I survived summer. In fact I was a lot better in the heat than I am now in the cold. I still get the occasional random joint aches but not as bad as previously. I'm getting mild chest pains/twinges, which I've been told may be costocondritis and that I shouldn't worry too much about these. But I will be chasing this up at my next rhumy appt in December.
I've been back to playing football a few times. Bar my level of fitness I survived without any major aches and pains - except when I went tumbling head first on to astro turf. That stuff is lethal :blush:
Last month I also had a surf trip and went in the water 3 times.
I hope you all are doing better. I've been reading about Benlysta and can't wait for it to get the full green light and for it to start flowing to everyone
Although from what my rhumy said I may not be eligible for it due to the level of my SLE! I can't seem to figure that one out. I had so much more to say but seem to have forgotten a lot of it
Old age I think (although I've never really had a good memory any way!). I'll try to pop in here a lot more often now.
