Benchmark
Walking "heel-to-toe" without falling over and without assistance: one step or less.
September 2011 - IV
My treatment began in early September 2011 after over 3 weeks as an in-patient at the NHNN and came as a relief after a much longer that expected period of investigation. I was started on 1g/day of prednisolone delivered intravenously for 5 days for an hour a day. This is a fairly common treatment strategy for CLIPPERS and corticosteroids (like prednisolone) are often used to treat inflammatory disorders in brain and elsewhere. I improved during the IV treatment but not miraculously so. My facial numbness resolved, my walking became more fluid but my slow speech did return to normal. (In fact for a couple of days my speech went into over-drive and I couldn't be shut-up!). There was no change in my double vision and I still had numb fingers and tightness around my midriff. I also developed a tightness in my lower arms, especially on the right side. Additionally I developed "glitches" where my limbs would stiffen and I would walk like a tin-soldier for a few seconds if I was distracted or starting a new activity (e.g. walking somewhere after sitting down for a while). My speech would stall in a similar fashion - the words were queued up and ready to go but I couldn't get them out. These glitches were often accompanied by brief rushes of light-headedness. Over-all though, some modest improvement and a follow-up MRI two days after the end of the IV confirmed reduction in lesion appearance. So I was discharged and continued treatment at home. Note that this was another diagnostic hurdle - no improvement either in symptoms or in MRI would have meant that I wasn't "Responsive to Steroids" and therefore probably not CLIPPERS.
Benchmark
Walking "heel-to-toe" without falling over and without assistance: three steps plus.
September 2011 - 60mg/50mg
I moved on to a prednisolone taper. This means starting at 60mg/day oral prednisolone and then dropping the dose by 10mg/day every two weeks. I was also taking Lansoprazole to prevent gasto-upsets and Calcichew calcium and vitamin D3 supplements to protect against steroid side-effects. I also got booked in for an out-patient DEXA scan to monitor bone mineralisation.
Five days after coming home I got out of bed, went downstairs and made a coffee and started watching tv. After about 10 minutes I realised I wasn't wearing my diplopia-correcting glasses. My double-vision had resolved over-night to the extent that in the house I was no longer aware of it. Miraculous! Over the next two days it resolved further to give me normal vision again for the first time since May. Over the next two weeks my balance and walking gradually improved and the finger numbness largely resolved with some residual numbness on the right-side. The walking/talking glitches remained, still associated with light-headedness as did the tight feeling in my right fore-arm and around my mid-riff. The glitches were still associated with distractions or new activities. They quite often came on when I was crossing a road or getting off a train on a busy platform so I had to learn to slow down and take my time. I am no longer the frantic commuter!
Benchmark
Walking "heel-to-toe" without falling over and without assistance: six steps plus.
September / October 2011 - 50mg/40mg
Over the last two weeks (early October 2011), there has been further improvement. My balance and walking has returned to near-normal and the remaining finger-numbness resolved. The right-arm and rib tightness are much reduced. The glitches have reduced in both frequency and intensity, now often being barely noticeable and not happening until the afternoon / early evening if at all. The most noticeable problem is that since leaving hospital over a month ago, I am wide awake every morning without fail between 4AM and 5AM. This is probably a side effect of prednisolone and could be worse; at least I am sleeping through most of the night rather than waking up randomly. It's a bit of a drag but means more early morning blogging!
Benchmark
Walking "heel-to-toe" without falling over and without assistance: ten steps plus.
The Future - 30mg and Beyond
Currently, I have one more week on 40mg / day before the next step down the taper. I've also had a follow-up MRI and am expecting a consultation before too long. Here is where it gets interesting. Many reported CLIPPERS cases suffer a relapse of symptoms either after the end of the taper or when the dose drops below about 30mg/day. Often a second course of IV steroids is required and/or additional drug treatments. Another diagnostic hurdle is whether my condition remains "Responsive to Steroids" - the CLIPPERS cases reported so far tend to respond to repeated doses after a relapse. So fingers crossed that improvement is maintained. An update on further progress - or lack of it - will follow in due course.
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.
