Just back from 2 days as a guest of the Day Care Unit at the NHNN, at Queen Square. This for reassessment, progress reports and a decision about future treatment options. The background is that I am now in the last week of my decreasing steroid taper but there is growing evidence that CLIPPERS is a chronic condition which must be carefully managed with continued drug treatment to prevent relapse.
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| Autumnal Queen Square |
The Day Care Unit is in a different building to the main hospital, just round the corner. I didn't know what to expect but thought I might still get a bed. As it turned out chairs were the order of the day, and pretty comfortable ones too. Essentially you sit in your chair and amuse yourself until someone comes to see you, collect you or summon you to a different room. Before I arrived I didn't know what was planned although assumed it would likely be repeats of tests I had previously as an in-patient. It turned out that neuro-opthalmology was the main focus together with reviews with my consultant and members of his team.
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| No, No, Not the Comfy Chair |
So to keep it short, here's the summary, hot off the press. My progress with regard to symptoms is very good. My vision is virtually normal with a subtle residual defect that is so subtle I don't notice it and neither would the opthalmologist if he wasn't looking for it. My recent MR scan showed further lesion reduction with only a few traces that still shine brightly with contrast. Personally I feel that I have improved a lot over the last couple of months but have plateaued now (in terms of balance/coordination) at about 90% of normal - which is perfectly ok for daily activities.
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| Sam the Cat at Queen Square |
Recent papers report some CLIPPERS patients who decline when Prednisolone drops too low. So the decision was made to maintain me at 15mg/day for the time being and to start me on Azathioprine (a steroid-sparing immuno-suppressive drug) at 25mg twice daily initially. The long-term aim is to reduce the Prednisolone and boost the Azathioprine as a long term therapy with (all things considered) less detrimental side-effects. This will mean regular blood tests, especially in the short term, to make sure my liver function and blood cell count are not being adversely affected.
So more scans in store after Christmas and a return visit to the Day Care Unit to see how things are going. For now some normality apart from having more pills to remember.
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.
