One patient's story

This month I was privileged to hear from Keith whose wife Lisa has recently been diagnosed with CLIPPERS. She has had a tough time as she had a much more acute onset of symptoms than I did and suffered several relapses before the CLIPPERS diagnosis enabled her to receive the right treatment regime. Keith has been keeping an on-line journal about his experience which is updated pretty much in real time. You can read their story here (note that the entries are most-recent first). Keith is also keen to find out as much as possible about how best to support a recovering CLIPPERS patient through treatment.

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.

 

This week was that time again, another trip to the good old NHNN for a brain-scan. This was a pre-emptive monitoring scan to see if there is anything untoward going on, as I haven't had one since last summer. I've no reason to think there is anything to see but, given the gap, it would be better to be able to intervene (with steroids etc) before overt symptoms appear. I've had enough of these now to know the routine pretty well. 1. Blood-test (beforehand), 2. Safety form, 3. Remove coins, keys, watch, belt, bank-cards, etc, 4. Scan 1, 5. Stick tube in arm for contrast, 6. Scan 2, 7. Wait for report. So I'm at 7 for now and it usually takes a week or two.

 

Interestingly, in the middle of the night after I had the scan, I woke up with a thumping headache and vomited three times over the next couple of hours (I should stress that no alcohol was involved ...). I did a bit of checking on the internet to see if the injected contrast ("Gadolinium") can have these effects. Nausea/vomiting are rarely reported but usually occur within minutes of the injection; reactions like itching, hives and rashes are more common. So I think it was probably coincidence; my doctor thought it sounded like a conventional migraine.

 

PS A new request for help on the forum this week from a CLIPPERS patient in the US. Does anyone out there have a similar experience?

 

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.

Rare Disease Day

In the absence of a picture of a rare disease, here is a picture of a rare fruit.
(A Dragon Fruit)

I recently found out about Rare Disease Day which is next Thursday (28th February). This was because I came across Rare Disease UK ("The National Alliance for people with rare diseases & all who support them"). Apparently, in Europe the definition of a rare disease is one that affects less than 1 in 2000 people, and in the USA it is one which affects less than 200,000 Americans at any one time. So CLIPPERS is officially rare by either of these definitions, and on current numbers I suspect at the rarer end of the spectrum.

 

The point of Rare Disease Day and of Rare Disease UK (and similar organisations in other countries) is to raise awareness and particularly make the point that, although individual diseases and conditions may be rare, collectively it is not unusual to have experience of a rare disease. Indeed the statistic they quote is that 1 in 17 people will develop a rare disease at some point in their life. Rare Disease UK's longer term mission is to "campaign for the development and implementation of an effective strategy for rare diseases in the UK" which can be no bad thing.

 

Read other articles in this series at Living With CLIPPERS.


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A Cold Start to 2013

A slightly delayed Happy New Year to everyone. It's been a quiet Christmas break on all CLIPPERS fronts. Nothing seems to have changed either personally (still taking the tablets) or research-wise (nothing new that I have found).  I passed my blood-monitoring test just before Christmas which was a minor relief as the levels of various things have fluctuated a bit previously. The next scheduled medical appointment I have is at the "Demyelinating Clinic" with my consultant in February, even though CLIPPERS is not thought to be a demyelinating disease (see e.g. Pittock et al, but of course I am not a doctor) - there's not enough of us in London to have a CLIPPERS clinic!

Currently we're pretty much snowed in and, like the garden birds,  waiting for the cold air to shift back East!

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.

Merry Christmas (sniff)

Sniff

It's not even Christmas yet and I've already received a surprise gift - a heavy Christmas cold. It's always the way, working hard up to the holidays then relaxing a little bit and getting ill. I can't even blame it on the consequences of Azathioprine as this has happened before (and also my wife has been coughing like there's no tomorrow for the last week, so there have been lots of germs floating about). I'd still like to know what role, if any, Azathioprine plays in these kind of infections. I get public transport to work every day, so am presumably exposed to all kinds of bugs, but don't get ill all that often. Should Azathioprine mean I am more frequently ill, or that when I am ill I get it worse or for longer? This is the worst cold I've had for a while but I'm not stuck in bed (some would say I'm a "difficult patient" in that respect) and it's not exceptional on the scale of things. I had another cold about three months ago and got it less severely than my wife. It's all a bit mysterious. Anyway, it won't get in the way of having a good holiday.

So I'd like to wish everyone - the regular readers and those who visit the blog occasionally or stumble across it at random - a very Merry Christmas and hope to see you all in 2013.

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.

Out and About

I've been away at a Parkinson's disease conference for a few days. I know (or at least knew) next to nothing about Parkinson's but did some image analysis on one of the featured papers. It was a really interesting meeting even if it was impenetrable to me in places. Parkinson's has been around for a long time - it was characterised by James Parkinson in 1817 - and affects a lot of people, but there is no cure as such, even now, and a limited range of treatments. Listening to the various talks at the meeting it seemed to me that a lot is known in detail about a lot of different aspects of the disease but the full picture is still not understood. Imagine trying to figure out the plot of Lord of the Rings by randomly sampling a few pages at a time from the three books. After you've read 50 sets of pages or so (and if you can put them in the right order) you will have some idea what is going on in certain parts of the story but you will still have a very restricted outlook on the whole; it will take many more pages to reflect the detail and give a true understanding. 

Now CLIPPERS is a relatively new condition (or at least newly identified) but it seems possible (I am not a doctor) that CLIPPERS will fit somewhere into the existing framework of understanding of auto-immune diseases. We already have treatments for CLIPPERS which can alleviate and suppress the symptoms at least some of the time and/or if used early enough. However, as far as I know, no-one has yet figured out the mechanisms, causes or triggers of the disease that will be necessary for a cure. I think the good news is that we are starting from a fairly advanced level of understanding about  related conditions so maybe CLIPPERS will be a missing part of a bigger puzzle ...

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.

Aside: Contagion

(This is another of those occasional Asides which are only a little about CLIPPERS.)
 

I went for my flu jab last week; I've only started having them since being treated for CLIPPERS so this is only the second. In the UK the good old NHS ensures that as a member of an at-risk population I automatically get an invite to get one for free at my local clinic. So I've had the jab and it was all very straight-forward and no trouble at all. Now I'm wondering what I've been exposed to along the way.

Cover mouth, cough, then wash hands.

I made the appointment and showed up at the clinic. Which was full. Of people coughing - half of them seemed to have flu already even though it was a special flu-jab day. So I checked in and sat down away from the worst of the splutterers. The check-in at my practice is computerised - there is a touch screen and when you arrive you click the relevant brightly-coloured button to select "male" or "female" and your date of birth, after which it identifies you and asks if it has found the right appointment. So far, so good. Perhaps because I got used to it in hospital, I automatically used the handwash next to the screen and sat down for my appointment. I didn't have to wait long, probably 5 minutes or so. However in that time a steady stream of people checked in at the same screen and not one of them used the handwash before or after coughing and touching the screen (or anything else). Given that everyone in the room was in an "at risk of infection" category (about 90% were pensioners and the rest pregnant women) they didn't seem to be taking many precautions. If any one of them had been exposed to Norovirus for instance then this packed room seemed an ideal place to transmit it. Anyway, pretty soon I made it into the injection room and once I'd convinced them I really was supposed to be there (not being elderly or pregnant) the jab itself was barely noticeable.

Next year I'm taking more precautions.

I'm not about to turn into Michael Jackson and wear gloves and a facemask everywhere. Still having had a few bugs in my time and not wanting any more while my immune system is compromised I think I'm entitled to be a bit paranoid.

Read other articles in this series at Living With CLIPPERS.

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Update: Nothing To See Here.

I left a few loose threads hanging over the summer about blood-test blips, strange aches and pains etc. So here's a quick catch up:

Blood

One of my liver enzymes (ALT) was a bit raised after a previous blood test so another was booked in. That enzyme level was OK the next time but then some other things were off - platelet level (I think) and bilrubin. So another round of tests followed a month later and now everything has settled down to the extent I can move back onto a 3-monthly testing schedule.

Bone

I started having some pains, mostly in my knees and hips after  I came off the steroids. So I agreed to go and have some knee x-rays at the district hospital to check for osteo-arthritis related damage. I felt like a complete fraud as to get there I walked for 10 minutes up an enormous hill with no problem! Anyway the x-rays were reported normal and I have an invitation to see my GP again if I want. I'm going to leave it for now as it's not a big problem and I'm a bit doctored out at the moment.

Drugs

Annual flu jab is all booked in - very important. Apart from that still popping the Azathioprine (100mg twice a day). It's now 4 months since I stopped taking Prednisolone and no sign of CLIPPERS symptoms at the moment. However, I think I'll want to get a year off steroids and symptom-free under my belt before I get too excited.

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.

First Birthday!

Happy Birthday To Us

Please excuse the slightly length entry - I think I can afford to be a little more verbose than usual to mark a year of blogging.

How It All Began

A year ago this week I was at home, very slowly improving, after nearly 5 weeks in hospital which culminated with a CLIPPERS diagnosis. A combination of high-dose steroids and cabin-fever from being at hospital and home meant I could talk about very little else than CLIPPERS (and boy could I talk). There were also a fair few people who wanted to know what was happening and despite my babbling I was getting bored telling them the same story and answering the same questions. So in an effort to save my marriage (by reducing the babbling burden on my lovely wife) and my sanity (by putting down a definitive account of my illness) LIVINGWITHCLIPPERS was born.

At the time I had no idea if I would persevere with it, not least as the diagnostic uncertainty meant there was a small but finite chance I could be dead by Christmas 2011. However I did gradually get better and the emphasis changed from just focussing on my own problems to providing a digest of what CLIPPERS news I could glean from the web.

Beginnings of a Community

Number of readers of livingwithclippers on a monthly basis

The readership has naturally ebbed and flowed over time and was initially quite high which I attribute to friends and family finding out what the hell had been going on! (When I say "high" I mean up to 20 visits per day - Rupert Murdoch has little competition from me although he has his own problems to deal with.) After Christmas 2011 the visits declined a little but in recent months there has been much more activity. I think there has been a shift towards people who don't know me personally but have some other interest in CLIPPERS for personal (or maybe even professional) reasons. I have also started to receive emails from fellow sufferers (what are we - CLIPPERS?, CLIPPYS?) from Europe, America and Australia.

Whatever their reasons for visiting, the readers of livingwithclippers are a global community as you can see from the map. (No recorded visits from Greenland yet, but I'm working on that.) And let's be quite clear that you have to want to come here. If you just search for CLIPPERS via Google you are highly likely to find other CLIPPERS before you get here: e.g. a popular basketball team, haircare products, boats, tea-bags etc etc Whatever your reasons for visiting, it's seeing the visits rack up week on week which keeps the blog going - there's nothing worse, at least in blog-land, than feeling you're posting straight to a black hole.

The Future

If you're living with CLIPPERS the future is uncertain but there have been some hints in the last year that although the disease is chronic it can often be managed and suppressed, at least in the short-to-medium term. I plan to keep the blog going while there is demand and I have something (hopefully) interesting to say. Maybe a more official support forum will appear at some point but for now you're stuck with my ramblings! But it doesn't all have to come from me. If you have some CLIPPERS news, or a CLIPPERS experience you want to share then send me an email and I'm more than happy to put some guest posts up here. Anyway, thanks for reading and hope to see you next year.

Brecon Beacons, South Wales, Summer 2012

 

 

Read other articles in this series at Living With CLIPPERS.

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September Sun

A CLIPPER on Holiday

Wales

I've been enjoying the last of the Summer sun in South Wales. The day after we arrived we climbed Corn Du and Pen Y Fan in the Brecon Beacons National Park. I looked at my watch and noticed it was exactly one year to the day since I was discharged from the NHNN with a bag full of pills and a diagnosis of presumptive CLIPPERS. My balance had improved after 5 days of IV steroids but was still not great. I also still had double vision and some strange intermittent jerkiness when walking or talking. A fuller account of those times is here. Now I have a smaller bag of pills and the various symptoms are pretty much resolved. From what I can gather I've had a good result from treatment but this is largely down to the luck of being in the right place at the right time and getting a diagnosis relatively quickly. CLIPPERS is tricky to identify and other things need to be excluded, but equally, it doesn't seem to get better by itself and needs treating. I was definitely in slow decline before and during my time in hospital but the pills are working for now.

CLIPPERS News

The debate about possible mechanisms for CLIPPERS continues. A short response to the paper by Dr Ortega (describing CLIPPERS as a complication of Multiple Sclerosis) has recently appeared. I don't pretend to understand the detail of the argument but more discussion about possible causes can only be a good thing and may eventually lead to firmer diagnostic criterion.

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.

Reflections

Gotcha!

We're All Going On A ...

As I'm about to go on holiday - so things will quieten down here for a bit - I started reflecting on where I was a year ago. The direct geographical answer is "Rhodes, Greece". The indirect answer is "blissfully ignorant about all things CLIPPERS".  About a week after I got back last year I got my first CLIPPERS symptoms and the rest is documented here for all to see.

... Summer Holiday.

This year I'm fortunate to be in good health so far and, although the anniversary annoyingly won't quite work out, I'll be nearly steroid free when I get back (down to 2mg/day). The only minor blip at the moment is an elevated liver enzyme score (ALT) on my latest blood test (for monitoring adverse effects of Azathioprine). It's on the edge of the normal range so being kept an eye on for now. I haven't heard anything about my recent MRI so hopefully there wasn't much to see. Now all I have to do is remember to take it easy on holiday which after all is the whole point!

More Good News
Just read this morning that "Calcium pills pose 'heart risk'" which could be worrying for those of us on calcium supplements to support cortico-steroids. However "doubling" a small risk is still a small risk and for me the thought of Prednisolone, weakening my bones is more of a worry. So I'll be sticking with Calcichew-D3 while on Pred as my doctor advises. The usual disclaimer about me not being a doctor and my circumstances likely differing from yours applies here.

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.

A Very Merry CLIPPERS Christmas!

 

As we move towards the Christmas holiday period there will be slightly less frequent updates here for a little while - not no update, just not quite the as-regular-as-clock-work twice-a-week schedule that hopefully one or two have got used to. For those who want to keep up to date without the hassle of checking back here, a quick reminder that you can Subscribe By Email from any page and receive the latest updates automatically.

In terms of news, I'm now maintained on 15mg/day Prednisolone and two weeks into Azathioprine which has now moved up to 50mg twice a day. I feel pretty good and everything is pretty normal as far as I can tell. I've just started a weekly schedule of blood tests to monitor the Azathioprine effects on my blood count and liver and kidney function. I thought that was it for 2011 ...

Life in the Slow Lane

I walk fast, I always have done. In part it's a physical thing as being tall means I need fewer steps to get somewhere than many other folk (I have a higher cadence).  On the other hand natural impatience also plays a part. I don't like to dawdle; I'm a rush-hour train-commuter on a schedule who doesn't like delay. Suffering coordination and balance disorders which impact on walking offers a unique and unwelcome insight into life in the slow lane. Maybe it's payback time for years of commuting intolerance.