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.

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.

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.

Who Gets CLIPPERS?

There have been a few reported cases of CLIPPERS now and I wondered if there was any pattern. There's not enough cases or consistency of reported information to go into much detail but I thought it worth a look.

So simple things first, there's been an even split in the cases reported to date of 8 men and 9 women. Including me and the one female and one other male CLIPPERS patient I've heard about so far makes for 10 men and 10 women. On the limited information available it doesn't seem that men are any more or less likely to be diagnosed with CLIPPERS than women.

The next most obvious thing to look at is age at onset of symptoms.

No news is good news ...

No news is good news over Christmas 2011 as things have been pretty stable.

Is this my Christmas box?

To recap, Prednisolone maintained at 15mg / day and Azathioprine on an increasing dose which before Christmas had just gone up to 75mg twice a day. Associated with the latter I have been going to my GP for weekly tests of blood count and liver and kidney function