A Cautionary Tale

The blasting of the innocuous-looking spot.

It's thirteen years since I was diagnosed with probable CLIPPERS and like everyone else, I'm ageing, slowly and hopefully gracefully. The skin on my face is increasingly dry and irritated and as someone who is very fair-skinned I know I need to be careful with sun-exposure. Recently I noticed a small but persistent spot on my cheek and eventually decided to get it checked out. The doctor said that she could see I was taking Azathioprine and that my skin wasn't great, but she couldn't see a record of skin-reviews. I said that I was aware I had to be careful with my skin but I had never been invited for a skin-review. So that's how I found myself referred to the dermatology clinic in the local hospital under the NHS rapid referral scheme which is usually used when there is a cancer concern. The doctor said she was almost certain there was nothing serious present, but with my history I should be looked at quickly.

    The dermatologist diagnosed various keratoses, told me there was nothing to be concerned about, and then produced a liquid nitrogen gun and froze the original innocuous spot. You can see the evolution of it from almost invisible spot to a blister and then slowly healing skin in the picture. Now there is no sign of it.

    I'm taking a few seconds of your time in the hope it will remind anyone on Azathioprine or drugs with similar warnings about sunlight exposure and the need for skin reviews to take them seriously and hopefully head off any unnecessary unpleasantness.  Although I slipped through the original monitoring net, at least someone alert picked up on it when I subsequently did have a concern.

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A Book on CLIPPERS is now available.

Updates

On Cheddar Gorge in 2022

Time for a few brief updates. Thanks to those who have read the CLIPPERS book and those who left a rating on Amazon; I hope you enjoyed it or found it useful, or both.  You may have read that Amazon are raising their global printing costs in June 2023, but the CLIPPERS book will remain at it's original pricing for now.

I had a telephone review with my consultant recently and, following a brain-scan last year which reported essentially normal (or at least no change), had nothing much to update him with. It's nice to have retained the same consultant through my CLIPPERS journey, which makes catching up easier (for both of us!). We had our now traditional conversation about future treatment strategy. I've been lucky to remain stable on Azathioprine since being weaned off steroids about 9 months after diagnosis. Taking Azathioprine comes with a small hypothetical risk but trying to compare that against the risk of not taking it for CLIPPERS is very hard. My view has always been that CLIPPERS can cause serious and potentially long-lasting problems, which in my case meant a month in hospital and easily six months in recovery; but at least I did recover. The risk of relapse is real but unfortunately unpredictable. Judging by the number of CLIPPERS case reports still appearing, relapse is still common so as before,  I said I thought that relapse was a bigger gamble and my consultant was happy to support that decision.

The fact that I still can't gauge a risk of relapse made me think. I don't have an inside track to the latest knowledge about CLIPPERS, but reading some of the recent papers  makes me feel that in some ways things haven't changed very much. Here's an example from 2023:

"The diagnosis of CLIPPERS is difficult and requires extensive differential diagnosis. A specific biomarker in serum or cerebrospinal fluid (CSF) for this disorder is currently unknown. The pathogenesis of CLIPPERS remains poorly understood and its nosological* position has not yet been established. Whether CLIPPERS represents an independent, genuine new disorder or a syndrome in the course of diseases with heterogeneous aetiology and/or their precursor stages remains debatable and incompletely clarified."

(*nosological = disease classification including an understanding of mechanism)

I accept everything said in this extract, but it could have been written for virtually any CLIPPERS paper over the last ten years. I hope in another ten years a similar extract will read differently.

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Did something happen?

It's a thumbs up from me

It's been longer than I thought since I last wrote something here. This reflects that in my life, as far as CLIPPERS goes, not much has changed. Still taking the tablets, still deciding in conjunction with my neurologist to keep taking the tablets, still wondering if I will always be taking the tablets.

But probably for me and everyone else reading this blog, something has changed. The emergence of SARS-CoV-2 (the virus) and COVID-19 (the illness) looks like it will affect most people in some way even if they don't catch it. I'm not going to speculate wildly about COVID-19 but one thing I know: people with compromised immune systems are more at risk and I am one of those people. Actually maybe I know more than one thing; my understanding is that people like me are not more likely to catch it, so we can take steps to reduce our exposure, and we not certain to have a more serious illness - it's all about risk. Still, I don't like playing games where the odds are biased against me and this seems like one of those situations.

I had already been mulling whether to work from home more (I'm lucky because I can) and at what point I should do this. I travel to work on several different kinds of public transport, which are often busy, in a city with rising numbers of cases, and the government estimates there may be up to 10 times more cases than they know about. My employer has been proactive though and issued a statement yesterday saying that anyone classed as vulnerable by Public Health England should work at home from now on. So that decision has been taken out of my hands and I feel relieved if somewhat daunted at the prospect of being at home for several months. 

There are lot's of unknowns still. The UK government is in a "delay" phase of managing COVID-19. Paraphrased this means: (i) "we can't stop it spreading, so we will slow the spread so as not to overwhelm the health services" (ii) "we will protect the vulnerable in the hope that enough other people build up resistance to stop it spreading further". Whether or not (ii) will be effective is the big question. All we can do is keep calm and carry on. And wash our hands relentlessly.

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CLIPPERS or SLIPPERS?

https://commons.wikimedia.org/wiki/File:Illu_tentorium.jpg

I was recently contacted by someone with a close relative who had been diagnosed with possible "SLIPPERS" syndrome. I initially suspected a typo but then realised that this was a CLIPPERS variant which had passed me by. Initially proposed by Dr Armand in 2015 this condition differs from CLIPPERS in which part of the brain is predominantly affected. In CLIPPERS the enhancing lesions seen in MRI are concentrated below the Tentorium (see image above). In SLIPPERS (Supratentorial Lymphocytic Inflammation with Parenchymal Perivascular Enhancement Responsive to Steroids) the lesions are concentrated above the Tentorium. The two patients in the original case-study both responded to treatment similarly to CLIPPERS but had presented with seizures and headaches respectively which I think are less common in CLIPPERS. Another patient was subsequently reported by Dr Horng in 2017 who also responded to similar treatment. It's unclear to me whether this is really a distinct syndrome or just a variant of CLIPPERS but at least the treatment response is very similar so the difference for treatment purposes is not crucial (it would seem - I'm not  a doctor).

In other news my medication (Azathioprine) is mysteriously unobtainable in my locale currently for reasons unknown to me. Is it a manufacturing problem, supply problem, hoarding problem? I don't know but it's been suggested I ask my doctor for an alternative - may be easier said than done as, having been stable for quite a few years, changing meds at this stage is not on my agenda. There was a shortage a few years ago which resolved after a few weeks so hopefully the same thing will happen again.

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CLIPPERS Treatment Strategy Consensus

We had one extra for lunch.

Recently, research papers have appeared from two different groups which both review the published cases to date and suggest treatment strategies. The papers originate from Dr Zalewski and Dr Tobin at the Mayo Clinic and from Dr Taieb's team at Montpellier, both of which have been heavily involved in CLIPPERS reporting and research. It is gratifying to see that there is substantial consensus on treatment which will certainly be helpful for the newly diagnosed.

The first treatment stage is intravenous methylprednisolone 1g / day over 5 days (Dr Taieb suggests up to 10 days if necessary). This should be followed by oral prednisolone 1mg/kg/day (Dr Taieb suggests for a month and Dr Zalewski suggests until expected clinical and radiological i.e. MRI, improvement is seen).

In the second phase Dr Zalewski introduces a "steroid-sparing" agent such as methotrexate or azathioprine or (one I haven't come across before, possibly as it is "15 times more expensive than azathioprine") mycophenolate mofetil. Dr Taieb suggests methotrexate in the first instance; I contacted him to ask why he doesn't use azathioprine (although he does recommend it if methotrexate can't be used for any reason). He pointed out that the reported CLIPPERS cases treated with azathioprine in the literature are far fewer and tend to be atypical. 

The "steroid-sparing" agent is usually ramped up slowly to test tolerance and the oral steroid can then be reduced. Both authors agree that 20mg/day is the minimum steroid dose that should be maintained to prevent symptoms returning until the alternative drug has reached an effective dose level. Dr Taieb also suggests alternative drugs if methotrexate can't be tolerated: azathioprine, cyclophosphamide and hydroxychloroquine.

I have missed out a lot of detail in this summary (and I am not a doctor) but nevertheless these papers do, in my opinion, mark a step towards an accepted treatment strategy which is effective in the majority of cases. Of course this all assumes that an accurate diagnosis of CLIPPERS can be obtained in the first place. If the stage 1 treatment above fails to provide any improvement then the diagnosis is probably incorrect. In addition Dr Taieb suggests that if there is any relapse with oral prednisolone at doses above 20mg/day in conjunction with methotrexate then the case needs to be looked at very carefully again.

P.S. I should mention of course that taking any of these drugs is not without potential problems. So if anyone out there is facing choices over treatment I urge you to ask your doctors about possible side-effects both short-term and long-term so you can make an informed decision.

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Parallels in this case study.

Making bread while I wait for more CLIPPERS news.

Happy New Year - it's been a while. I'm afraid everything has  been a bit quiet recently.

Anyway, new year, new post, new case-study. When I finally got around to reading this paper I was pleasantly surprised for two reasons. First, if you have been hanging around here for a while and caught up with some of the jargon, it has a quite concise review of the state of CLIPPERS knowledge in 2016. Second, the treatment strategy is more like my own experience than most of the other reports out there.

In this study a 46 year-old woman first had problems with horizontal eye movement . She had dizziness and problems with gait which developed over 4 months. So this lady was eventually treated with high-dose Prednisolone (in fact in three phases of 500mg/day, 250mg/day and 120mg/day over 3 weeks in total) followed by tapering oral steroids which resulted in very good improvement of symptoms. The patient remained stable on Azathioprine (which was introduced while still on Prednisolone) for at least 6 months - i.e. the length of time reported in the paper. This is far too short a time-period in CLIPPERS to be very significant but encouraging nonetheless. The authors note that treatment with Azathioprine is rarely reported but they consider it important (and I agree) to investigate drugs which may work in the absence of corticosteroids, at least in some patients.

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A neurologist calls ...

The greenest caterpillar I ever saw!

... or rather, I call on a neurologist. 

Last week was my first (and likely only) appointment this year with my neurologist who has been managing my care since I was diagnosed in 2011. Since I last saw him my drug regime changed slightly due to some worries about blood tests. My understanding was that my total white cell count was dropping too low which would make me susceptible to infection. 

My neurologist clarified this by explaining that there are several different types of cells in the total. The one which was causing concern in my case was the neutrophil count. The web tells me that neutrophils fight infection and if there are too few of them even bacteria normally found in the mouth, on the skin and in the stomach can cause serious problems. Now the drug (Azathioprine) I take for CLIPPERS aims to reduce the lymphocyte count - lymphocytes are the cells associated with CLIPPERS. But clearly for whatever reason, both cell counts were being driven down over the summer. He was reassured by my more recent test results and my Azathioprine dose is high enough (based on body weight) to still be having an effect on lymphocytes. We did the usual eye-tracking and finger-pointing tests and some checks on muscle-tone and reflexes and nothing cropped up there.

We also had a discussion about long term Azathioprine use. Unfortunately we don't know for sure if that is what is keeping me well. I said that if the risks of serious illness associated with taking Azathioprine long-term were low then I felt I had more to lose if I stopped taking it and suffered a CLIPPERS relapse. He said he agreed but it was hard to be definitive because of the lack of knowledge about how CLIPPERS works. So I said I would keep taking the tablets. 

It is also sobering when reminded that my status is "in remission from cerebellar disease" which sounds like I am stuck in some kind of waiting room.

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Update

Reflection on a London tube-train - curved glass.

Regular readers may recall I was having problems maintaining a reasonable white blood cell count while on 200mg/day Azathioprine. Since then, my readings went up slightly (3.a-little-bit) and then dipped down again to 2.7 at which point the doctors decided action was required. Of course I feel fine day to day but if the white blood cell count gets too low I could be at risk from infections - and this is someone who travels on public transport to work so I'm concious of being exposed to bugs from other people most days. So I was told to reduce my dosage from 100mg AM + 100mg PM to 100mg AM + 50mg PM , a 25% reduction overall. 

I am in uncharted territory now - and a bit paranoid to be honest - as I have been on this dose for 4 years and have no idea what the critical level is or how tightly connected the white blood cell count is to the chance of CLIPPERS relapse. My thinking is that this dose change is simply returning the white blood-cell count to the intended effect of the therapy in the first place so everything should be OK. I have my first blood test since changing the dose this week and I will keep you posted.

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Unwanted Dips

Spring in my parent's back garden

I recently got called back by my local docs as my total white blood cell count has dipped below my usual acceptably low level of 3-and-a-bit. Apparently in an ideal world it would be above 4 and in my world it usually hovers around 3.2 or a little higher or lower. In March it was 2.6 beating my previous record of 2.8 a couple of years ago. At this point there was apparently some head-scratching behind the scenes as usually, at least at my practice, a level this low would often trigger a change or cessation of the medication causing it to dip - in my case Azathioprine. I have now been taking 100mg Azathioprine twice a day for about 4 years and not had too many problems on it to date. 

My neurologist has advised I remain on my current level of medication and have full blood counts every 3 weeks. I think one issue is that no-one knows the correct levels of medications for CLIPPERS except in general terms and the only thing they know about me is that I have been essentially symptom-free while taking Azathioprine. (Of course this doesn't prove that Azathioprine is the *reason* I have been symptom-free). So I think all concerned are a bit loathe to mess with the meds in case it triggers something worse. Having said that I have been told to be very watchful of illnesses which feature high temperatures / fevers and get myself down to the surgery ASAP if one appears. I'm having some more blood taken tomorrow, so in a few days should know if this is a blip or a trend. It's worth mentioning that I had no reason to think there were any problems so although these blood tests are a bit tedious after five years  they are well worth keeping up with as things can and do change.

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More blood.

Filled tubes, 9 of them.

So, following on from last time, I finally managed to get my blood sample collected for the Mayo CLIPPERS study. In fact, I had no problem filling all 9 tubes - I have good veins apparently. Hopefully it survived the trip over the Atlantic with FedEx and will contribute in some small way to helping understand more about CLIPPERS. 

Two warts merged into one.

As of the beginning of June, I am over four years since first symptoms and still taking Azathioprine with few side-effects. Apart from occasional blips in liver scores, I have a few warts (7ish) which is apparently quite common on Azathioprine. They are confined to fingers with a few periungual ones for good luck. Not very pleasant, but could be worse - I had them blasted with cryotherapy recently which will hopefully help. That's enough about warts.

Finally, I'm not sure how long this has been live, but CLIPPERS now has a short entry on Radiopaedia (think of Wikipedia, but for doctors)

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Extending CLIPPERS (again)?

As time goes on, there seem to be more case studies which veer away from the characteristics of the original cohort described by Dr Pittock. In this recent report "An extended chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids phenotype", Dr Lane and colleagues describe an interesting new case with some unusual features. (Unfortunately full text for this article is not available on-line, but those interested could try emailing the senior author Dr Robin Howard and asking for a pre-print.)

The earliest symptoms of the woman in this case study were initially right-sided facial weakness with abnormal cold sensations on her left leg. It was over a year before scans revealed CLIPPERS-type brain lesions. However in this case there were more wide-spread lesions ("cortical involvement") than in some other reported cases and she suffered seizures. The CLIPPERS symptoms improved immensely after 5 days of high-dose steroids (although at 500mg/day rather than the 1000mg/day I received). Of interest to me  is that this patient was then moved onto a tapered dose of Prednisolone starting at 60mg/day (like me) and subsequently onto Azathioprine (like me, but dosage not reported). She has apparently remained well 6 months on. 

My experience is not directly comparable to this patient as my symptoms were much more in the "classic" vein (i.e. limited to double-vision, balance, speech, symmetric facial and limb numbness). However interesting to see the use of Azathioprine when it seems more common to prescribe Methotrexate or Cell Cept. I'm not convinced Azathioprine is a magic bullet but suspect that different people react to the disease and the treatment in different ways; but I am not a doctor.

Interestingly, my doctor said recently he still has no idea why some people seem to relapse on these "steroid-sparing" agents but remain well on steroids, as both treatments should have essentially the same action.

In other news I finally got round to sending my consent forms back the Mayo for their study.

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Blood and Bone

My regular blood-testing arm.
I stopped counting how many needles have been stuck in this bad boy a long time ago.

Blood

So the saga of the blood-tests continues. People like me who are on long-term Azathioprine have to have regular blood tests to make sure the "cure" isn't worse than the disease. I've had the occasional blip in a liver enzyme which has settled down for now fortunately. I was hoping to move back to three-monthly tests but a couple of other things to keep an eye on so another panel of tests in a month. Better safe than sorry though. Still taking 100mg twice a day which I think is about as high as it gets.

Bone

I also mentioned in passing that I had some pain in my joints ("Arthralgia" - you learn something every day!), most noticeably in my knees, so I promptly got booked in for some x-rays to check for early osteoarthritis. One or two people on the interweb mention joint/muscle pain in the same breath as Azathioprine, but as I've noted in this blog before, the problem with the interweb is you can usually find someone with any combination of symptoms and possible causes you can think of!

Other than that, pleased to be ticking along. Almost exactly a year ago I was  being wired up for my first 1000mg intravenous dose of Prednisolone after three weeks of investigation in the NHNN and hoping it would do some good. Fortunately it did.

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Another Quick Update

Things have been quiet recently which is why there's not been an update for a little while. Anyone who spent June in the UK will know it's not just because I've been out enjoying the summer sun!

I definitely couldn't do this with double vision ... (Prometheus, IMAX 3D)

I've been pleased to hear from another "CLIPPER" by email this week - that makes at least four since I started writing this blog which shows that CLIPPERS does exist in the real world outside the research papers and is being diagnosed.

I've also been Prednisolone-free for three weeks (but still on Azathioprine). I haven't noticed any change in CLIPPERS symptoms (I don't have any to speak of at the moment thankfully) but have been getting some stiffness in my legs - hips and knees mostly. This doesn't feel neurological in the sense that it isn't like the "locking-up" or balance problems I had last year. It's more like you might feel after you'd run up a steep hill and most noticeable after I've sat down for a long time - could just be middle age creep. I did briefly Google this association with Azathioprine and found some similar (non-CLIPPERS patient) reports. But on the other hand it's the way of the interweb that you can usually find a report of anything you want - if I suddenly developed a wart (or a potato!) that looked like David Cameron I'm sure somebody somewhere will have reported a similar association with Azathioprine. I also found reports of people getting joint/muscle problems when (or even after) coming off Prednisolone although I was a on very slow taper so I don't know if it was that either. Anyway add to the list of things to ask the doc next time I see him, but I obviously don't want to make the mistake of confusing correlation with causation.

I'd also like to thank the slowly growing readership (especially the ones who come back for more!) - hopefully some of the stuff here is still either interesting or useful.

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Slightly Cleaner Than Before

Keeping My Chin Up

Insured At Last  

Well I finally got some travel insurance via All Clear Options but it took a while for their back-office doctors to decide what to do with me. So for the purposes of insurance I now have Primary Cerebral Vasculitis. I spent about a week being investigated for various kinds of vasculitis last year so I guess it makes sense and Wikipedia says it can be confused with Multiple Sclerosis which I was also investigated for. They would only insure me for a single trip and the cost is about 10% of the holiday (well the holiday wasn't that expensive in the first place) which made me do a double-take. A friend who had some more recent completely different (but well known) health problems was quoted about two and a half times the amount I was for a trip which was much further and for longer so I guess it was proportionate. The good thing is I am able to insure my wife as a "Travelling Companion" which sounds a bit Victorian but means she can claim for problems caused by my CLIPPERS too (like cancellation costs etc). Anyway, that's enough about insurance.

Sex and Drugs and Rock'n'Roll (But Mostly Drugs)

Prednisolone is lower than it's been since I started taking it. I'm now well into single figures and moving to 8mg / day tomorrow. Now we find out if the Azathioprine is doing it's job and taking up the slack. If nothing else it's certainly making me paranoid about all the people who's one aim in life seems to be to cough all over me at the moment.

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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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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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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

With a Bang or a Whimper?

 

A squawk

My CLIPPERS 2011 ended with more of a whimper - or at least a squawk -  than a bang. On Monday I was booked in at the Day Care Unit at NHNN for an MRI and a meeting with my consultant. On the previous Friday the MRI appointment was pulled forward so I had to be at the unit for 8:45AM. This meant leaving the house earlier than I normally do to get to work! On the first day of my Christmas holiday!! I shouldn't moan too much though - comprehensive monitoring is a good thing.

CLIPPERS Progress Assessment

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.

Autumnal Queen Square