Some readers have asked how my treatment has been going since the last update.
October - 40mg/30mg Prednisolone
Things are continuing to improve. The speech "glitches" have virtually disappeared. The walking coordination glitches have reduced in intensity and frequency and are absent for large portions of the day. I would put my balance/coordination at around 95% of normal. Apart from insomnia, the most obvious (to me) remaining symptoms are the tightness in my right forearm which also locks up further with the walking coordination glitches. Also some intermittent tight feeling across my lower right ribs but this is at the level of discomfort rather than anything worse.
November - 30mg/20mg Prednisolone
Things are continuing to improve. The speech "glitches" have virtually disappeared. The walking coordination glitches have reduced in intensity and frequency and are absent for large portions of the day. I would put my balance/coordination at around 95% of normal. Apart from insomnia, the most obvious (to me) remaining symptoms are the tightness in my right forearm which also locks up further with the walking coordination glitches. Also some intermittent tight feeling across my lower right ribs but this is at the level of discomfort rather than anything worse.
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| Prednisolone dosing plan |
November - 30mg/20mg Prednisolone
The walking and speech coordination glitches have gone now. Balance/coordination remains at about 95% - although hard to judge. One thing is I can now do unlimited "heel-to-toe" walking when I could barely mamange a single step when I began treatment - I assume this isn't just a practice effect. The tightness in my right arm is reducing and absent much of the time. Still waking up early but now sometimes go back to sleep rather than being wide awake for the duration.
November / December - 10mg/0mg Prednisolone ?
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| Have I taken my tablets today? |
So far so good. I now have 2 days of poking and prodding back at the NHNN booked in towards the end of November 2011. I'm not sure what's on the agenda this time but likely to include general neurological assessment, neuro-opthalmology including fundus microscopy (since the last time they saw me I still had double vision and other related problems). It's also possible I'll get another MRI as my last one was a month ago. One important aim is to decide where to go treatment-wise. I finish the Prednisolone course around the start of December and so far have made steady progress. Many reports about other CLIPPERS patients have found that additional steroids or alternative immuno-supression drugs (like Methotrexate or Azathioprine) are required to prevent relapses. So provided nothing is found to indicate otherwise, I may come home with some new pills.
Summary
At the moment you would have to look very closely and/or know me pretty well to see any problems. In fact I must be looking better now because people have started telling me how terrible I looked over the summer ;-)
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
