Battery Pharma

I've been quite lucky regarding medication side-effects so far. I had a few days of slightly manic behaviour while on high-dose Prednisolone and then several weeks of early waking which has now largely resolved. Having been on Azathioprine since before Christmas I thought I was in the clear there too.

Unfortunately since hitting the 75mg/100mg dose I've started getting a bad taste in my mouth quite a lot of the time. Now unless you are lucky enough to get the special coated versions, anyone taking Prednisolone will know that they taste bad - kind of like paracetamol but worse. This taste is not dissimilar but has only appeared in the last two or three weeks so must be Azathiorprine-related.

I had a look on the web and it seems more common for bad tastes to be reported with Prednisolone than Azathioprine. My consultant didn't seem too concerned about it as a symptom but said that given that the drugs are doing me some good, probably best to suffer it. Fair enough and I agree with the sentiment. At risk of sounding like a whinger, although this is not the worst thing that could happen by a long way, it is a bit tiresome - imagine sucking on batteries for much of the day and you're getting close. Coffee and tea taste quite bad most of the time but fortunately most foods aren't too badly affected - so I'll just keep eating for now. Hopefully it will wear off after a while. Whinge over.

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Small Steps

Saw my consultant in clinic at NHNN today. It seemed a good sign that this was a straight-forward walk-in and walk-out appointment - not a comfy chair in sight. My own assessment of progress was "pretty-good if stalled very slightly short (in terms of balance and fluidity etc) of pre-CLIPPERS".

A walk in the park, unlike the last few months.

After a few small tests which I'm now quite used to (from the classics like "heel-to-toe walking", via the once supremely hard "touch your nose - now touch my finger", to the actually quite difficult (without moving your head) "look left, look right, look up, look down") he seemed satisfied and remarked that I looked altogether better than when we last met in November. Good stuff!

So the next step in treatment is looming - maintain the Azathioprine (at 100mg twice daily) and reduce the Prednisolone (currently 15mg / day but soon to be reduced by 1mg / week). I feel a bit nervous about this as - let's face it - stability is reassuring. But this treatment strategy works in other conditions and has been applied to some reported cases of CLIPPERS so fingers-crossed.

I also still seem to be "Billy No-Mates" in terms of similar diagnoses in London known to my consultant; be interested to hear if you know differently. You never know, maybe I'll qualify for a blue plaque one day ...

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Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

Bill's Pills

A brief treatment update. As I'm sure you are bored of hearing by now I am currently on a steady dose of Prednisolone (15mg/day) and an escalating dose of Azathioprine (beginning at 25mg twice daily and aiming for 100mg twice daily)  with the hope that the former will eventually be replaced by the latter.

Three of these = 15mg. They taste bad though. Fruit-juice required.

Over Christmas my escalation plan for Azathioprine hit a minor snag which meant reducing from 75mg back to 50mg. Over the last few weeks my various blood/liver-function tests have been fine so I have been cleared to move back up to the target dose of 100mg. I will presumably stay on this dose or higher for the time being subject to any other problems before we collectively hold our breath and start reducing the Prednisolone. From reading on the web this transfer from Prednisolone to Azathioprine seems a fairly standard strategy in other conditions so there is a reasonable chance it will work ok for me.

One 50mg + 2x25mg = 100mg twice a day.

And apart from that not much to report. Everything fairly normal and certainly stable. I get occasional right-forearm tightness and very slight reduction in walking fluidity (but not so as you would notice) when tired but neither of any real consequence. Apart from that a lingering metallic taste (a bit like paracetamol) which others have reported with Prednisolone. Sleeping has thankfully sorted itself out so I don't usually wake before 6am now. And I seem to have avoided (so far!) the excessive weight-gain and moon-face appearance which is a quite common side-effect of Presnisolone. I have put on about 7 pounds since leaving hospital and do have to be quite careful not to over-eat but that seems to have stabilised too for now.

I have a clinic appointment in about three weeks (in the demyelinating clinic - probably didn't know where else to put me) and probably another scan before then but no date yet. Also keeping an eye on the research literature for new CLIPPERS gems but it's been a bit quiet recently. More news as I get it.

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.