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.

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

First Treatment Update of 2012

Could this be why my liver test blipped recently?

Scantastic

You may remember me whinging a bit about being called for an MRI on short notice the week before Christmas. I didn't hear anything more about the scan and assumed everything was stable. As it happens I wasn't quite right about that - it turns out there has been some further improvement. 

According to the letter I received after Christmas I had some "further reduction in enhancement mainly in the pons along the Virchow-Robin spaces". Also, "the hyperintense signal  in the FLAIR images have also slightly regressed" and "there is overall improvement when compared to previous examinations". So this was a pleasant surprise (even though I had never heard of the Virchow-Robin spaces).

Festive Excess?

The other development over Christmas was that I had to step my Azathioprine dose back down from 75mg twice a day to 50mg following a blip on my weekly liver enzyme tests. After being retested after being on 50mg for a couple of weeks the blip had gone so I'm trying the 75mg dose again. Just had the second test after about a week and will see what shows up. I suspect the blip may have been a seasonal anomaly but I might be completely wrong! My target dose, subject to blood and liver tests staying clear, is 100mg twice daily at which point my medical team will consider reducing the maintenance Prednisolone.

So for now a relatively quite period and expecting another MRI before my clinic appointment in February. I'll just keep taking the tablets until then.

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

What treatments are being used for CLIPPERS?

Regular readers will know about my treatment regime for CLIPPERS discussed at length in previous posts (here and here and here) ? But how typical is my experience? I had a quick peer at the CLIPPERS papers to date to look for treatment patterns. What seems to be clear is that there is a generic strategy which usually involves:

• high dose IV cortico-steroids, typically 1g/day of Prednisolone for 3-5 days
• a maintenance or reducing dose of oral steroids, typically 80mg - 10mg daily
• a transition to a "steroid sparing" agent, e.g. Azathioprine or Methotrexate

There are some variations on this theme. The papers don't give much information about the detail of the treatment strategy and I'm not a doctor so it's down to speculation. My best guess is that treatment follows a pattern which is known to work in most cases so far but there is some variation which can be put down to:

• regional / national treatment practices
• foibles of individual medics
• tailoring treatment regimes to better suit individual patients
• some experimentation with treatment to (hopefully) achieve better results

I can summarise the treatment of patients I have read about (17) to date as follows:

Phase 1: Initial Treatment

• 15 had IV prednisolone for 5 (14) or 3 (1) days
• 1 had oral prenisolone at 80mg / day
• 1 had 12mg Dexamethasone weekly for 4 weeks

Phase 2: Maintenance Treatment (information is a bit more patchy here)

• Most had oral Prednisolone beginning at between 60mg and 80mg and tapering to 30mg or less
• One had 1g / month for 3 months.

Phase 3: Additional Treatment (information still a bit patchy)

• Azathioprine
• Cyclophosphamide
• Immunoglobulins
• Methotrexate
• Mitoxantrone
• Rituximab

So my experience of

• 1g/day IV Prednisolone for 5 days
• 60mg/day oral Prednisolone taper down to 15mg/day maintenance
• increasing dose of Azathioprine currently at 50mg/twice-daily

is fairly typical of the above pattern and is working for me so far.

Remember, I'm not a doctor, so if in doubt assume I don't know what I'm talking about.

An update on my most recent scan and treatment will follow shortly.

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.