Tag Archives: Royal Free Hospital

SHEDDING LIGHT ON SKIN – Treatment Update Four

Treatment Update Four

Various dates, Sept 2012

I stayed in pretty rude health throughout the Edinburgh Fringe, avoiding alcohol, eating well, and going to the gym nearly every day. I had a scare of raised glands and a sore throat so caned the antibiotics which I had been prescribed for just such an eventuality. So if I had indeed been headed for a throat infection the pills steered me to safety, as I didn’t succumb.

My hospital the Royal Free – which is not something those pesky french newspapers can claim to be this week, eh readers?

Since my return I have seen an immunologist, a heptologist, my consultant and my derma-psychologist. If there was a Panini sticker album of medical professionals I’d be doing very well indeed. I was being seen by the immunologist to see if there was any reason I couldn’t change my medication. I have been having success with Ciclosporin but it is only a short term solution (use it for more than a couple of years and your kidneys start getting into trouble). Dr McBride wanted to see what was going on with my immune system so that she could plan the next step in my treatment. To recap – psoriasis isn’t a skin condition as such, more a problem with the immune system. In taking immune-suppressing medication one can open oneself up to streptococcal throat infections, which in turn set off an outbreak of psoriasis, the very thing I’m taking immune-suppressants to combat: talk about coming full circle.

I was asked a series of questions by the immunologist about allergies and the like. One anomaly is that I was not a sickly child (though I was prone to hayfever). Traditionally an under functioning immune system would produce a less than robust infant, but I was well ‘ard. I am seeing the immunologist again in a few weeks, and he is also putting me in for a test to see if I am allergic to penicillin or not. This is an interesting one – I was prescribed penicillin for throat infections in the past, and this was followed by psoriasis outbreaks. Was it penicillin rash onto which the psoriasis attached itself? In which case, penicillin = bad. Or, was it that we didn’t catch the throat infection in time and so the psoriasis was related to that and nothing to do with the penicillin? In which case, penicillin = good! This will be useful information because I am going to be put on preventative antibiotics for six months to allow me to see if the Acitretin is working without the complication of a psoriasis outbreak caused by a sore throat. The penicillin test can take an age to come through – in the meantime, I have to be content with giving another gravy boat of blood to the ever patient phlebotomists who try not to show too much amusement at my fidgety terror of having a needle stuck in my arm.

My sessions with Dr Mazara (the derma-psychologist) are coming to a close – there are only four or five left, so we need to look at the things that had been bothering me (my shortcomings if you like) and see if our sessions have helped me to overcome them or at least deal with them in the long term. I’m not sure it’s possibly to quantify the work that she does, but it is very useful in getting both support and a perspective on various issues.

And so to Dr McBride after a month in Edinburgh. The hospital must have loved August – I bet they thought they’d got rid of me. But no – here I am again, taking up valuable time and sucking up precious resources. It must be tedious – I’m such a drain on NHS patience and morale I’m think of changing my name to Jeremy Hunt. Anyway, Dr McBride was kind enough not to show her disappointment and was actually pleased: PAASI score was 2.1 and my DLQI was 2. I’m aware that to most of you I may as well have just typed “I have 99 flibbles and a soupcon of twack” so I shall explain. The PAASI score is the Psoriasis Activity And Severity Index, which is an objective assessment of the coverage of psoriasis my body is being subjected to. The lower the score the better. In July I was at 8.7, June 12.5 and prior to that I had been a whacking great 17.2. I’ve never been this good. So she is optimistic about my potential, which is nice. Ah well, whatever happens, we’ll always have PAASI (that would have been a better pun had it been spelt, as I had assumed before discovering what the acronym stood for, PARSI, as that would have been an anagram of Paris. Never mind, I still like it).  The DLQI is the Dermatology Life Quality Index which is, I think, based on a questionnaire you fill in every time about how much the condition has effected aspects of your life (work, clothing, sport etc). I have generally been around the 2 mark, but it alters when I get a particular flare up. My cholesterol and liver also looking good. The latter I knew thanks to the heptologist I saw a week earlier, who basically said that my liver was all better because I hadn’t been drinking the ridiculous volume of alcohol I have had a tendency to drown my sorrows or toast my successes with, with rather too much alacrity.

Some Acitretin, yesterday.

Acitretin cannot be taken by people with liver disease so it’s important it is in a decent state if I am to take this medicine. I have a slightly fatty liver – this essentially warns me that if I batter it with booze to quite the extent I have done then in ten years’ time I might be in serious trouble. So I need to timetable my drinking and make sure I treat my liver with the care it deserves. We are going slowly with my treatment – the ciclosporin will be reduced to 125mg morning and night (from 150mg) with 10mg of acitretin to get me going with that. This has been preferred to the biologics: whilst ciclosporin is a general immune-suppressant (originally for use with kidney and liver transplants), the biologics is more targeted. Nonetheless, Dr McBride would rather try with Acitretin before taking that step, even if it might make me go bald. If that happens, I can blame something nature was already doing on my medication. Excellent! Perhaps its other side effects could be being a bit messy, an unimaginative lover and rather dull at parties. It’s not me, it’s the drugs, honest. Actual potential side effects, as it happens, are, according to the leaflet, sore eyes, muscle aches(it says here to avoid those by not doing any “rigorous exercise” – well, if you insist …) and dry skin. Dry skin, a side effect of a psoriasis treatment? That’s like taking something for hayfever that makes you sneeze. Ah, well, I’m game – and Dr McBride says the manifestation of the listed potential side effects is relatively unlikely. As of yet nothing too drastic (bar slightly dry lips) seems to have happened, though it does say avoid alcohol and I celebrated the completion of a hard but enjoyable weekend at the Comedy Store with a bottle of Chablis and some lovely scotch whisky given to me by my pal Jason Cook, so it’ll be interesting to see what my next lot of bloods say. It looks like the acitretin will be used on me for about six months, to really nobble the blighter, and then I will come off it. As Dr McBride says, any treatment can at best control the condition – as yet there is no out-and-out cure…

So I’m back in a month with both Dr McBride and the immunologist, but in the meantime, the Psoriasis Association has been in touch. I’ll let you know all about that next time, but October has some exciting things on the timetable…

SHEDDING LIGHT AND SKIN – Treatment Update Three

Treatment Update Three

Monday 6th July

A change from the norm. Today I am in at 9am to see Dr Mazara, my derma psychologist, and then at 3pm to see Dr McBride and a joint specialist to see if my back aches and pains are dues to psoriasis-related arthropathy or are simply entropy and old age combining to start my day off creakily.

Dr Mazara is very nice, but I have to admit to mixed feelings about going to see someone to talk about myself and my emotions. When people used to say psoriasis was stress related this gave my younger self something of a boost – stress sounded like noble suffering, a sign that this twenty something drama student might be deeper than his fellows. And we all know how successful those tortured artists are – Mozart, Van Gogh, Tony Hancock, well why not add Toby Hadoke to that list (in fact, most people spell my name closer to an approximation of Hancock’s than my own ; maybe it’s fate). Now, though, the somewhat maturer me is somewhat less patient with the idea of navel gazing. I’m not of a generation who fought through a war and saw all sorts of horrors – and my grandparents and their lot seemed to survive pretty well just getting on with things without requiring the state to support them wanging on about things that upset them to a medical professional. Dr Mazara assures me though, that lab tests as recently as 2010 have shown a relationship between a patient’s psychological state and the grip that psoriasis has on them, so it’s not all hippy-hippy-let-it-all-hang-out-man claptrap. Whatever – I have resolved to throw everything I can at this so I’m not going to let my own innate prejudice towards self-indulgence stop me from trying something. I am aware that hatred of self-indulgence coming from someone whose career involves talking about himself out loud a lot might seem a bit hypocritical, and that’s because it is. It’s almost like I loathe myself for doing what I do and being what I am …. So I shouldn’t be seeing a psychologist for what reason precisely?

 

Me, about to enter The Daily Mail website. The things I do for you lot.

This part of my treatment is pretty well individual so I won’t report too much of it; I’m not being cagey, but I’m not sure there’s an awful lot about it that’ll be any of use to anyone. However, I mention it because there’s an article in the (wash my mouth out) Daily Mail that covers Dr Mazara’s work and the connection it makes between emotion and the skin (blushing, sweating etc.) seems a convincing one. Anyway, for the first and last time in my life I will direct you to the Daily Mail as it’s an interesting piece, though the comments below it have a reassuring level of insanity just to remind you how squalid the area of the internet you have just entered truly is (it’s here). Have a hot shower afterwards. And the dubious must be aware that I too am very much a reluctant soul-bearer: I think people wallow and self-indulge at their peril. But Dr Mazara is good at putting a sensible and reasoned perspective on things and I don’t leaving her feeling anything other than more positive so I’m giving it a shot: and I may as well go for it wholeheartedly or not at all.

Then onto Dr McBride, who is cautious about my slightly raw sounding throat and prescribes me some antibiotics just in case I sense another outbreak of tonsillitis. She is very aware of my imminent trip to Edinburgh and so is treating me accordingly. She doesn’t want to try anything drastic as if anything goes wrong it’d be a bit of a disaster geographically and would probably be as useful for my show as a one star review from The Scotsman. So ciclosporin continues, with a vat each of Doublebase and paraffin moisturiser to take with me. No surprises there really, as I had only really seen her last week and not much has changed bar her contact with the immunologist, which revealed that I will probably be alright taking the biologics. Whilst she says that it is good to have them “up our sleeve”, she feels that “the purist” (I like that) in her is erring towards acetratine with preventative anti-biotics. The reasons for this are outlined in my last treatment update and were simply re-emphasised today in the light of this new information. She noted, with a wry smile, that there are some possible side effects, and I glanced glumly upwards at my thinning thatch. Ah well, I suppose now that at least when I consider my increasingly threadbare pate I can reassure myself that it is no longer baldness – ‘tis a noble brow rent by suffering. Anything for the most dramatic emphasis. Anyway, today I was there for my joints and did some bending over and stretching and all seemed OK – there’s a slight query about my back so I’m having an X-Ray, but I was discharged by the joint doctor on the very first day I saw him. I can only imagine how jealous Drs McBride and Mazara must be of the lucky fellow.

The Psoriasis Association has started a new initiative which involves sufferers writing a postcard to the disease to tell it how it makes them feel. The cynical amongst you may scorn this as you did my opening paragraph, but I’m fascinated that those at the very top of the profession of understanding, curing and representing the disease all feel that there is something in it. So I’m not going to argue. They also feel that there is a massive stigma still attached to psoriasis, and that it is rarely talked about (eczema steals all our limelight – it’s the A-Lister of the skin disease world). There’s an event/initiative happening in October that I will try to be involved in, which is helping to raise awareness of this affliction that touches between 2-4% of the population. Dr Mazara tells me that there are still people who are too ashamed to admit that they have it. Because I’ve never been worried about my looks (what’s the point?) and dress like someone who fell asleep in a hedge in 1976 and only thawed out yesterday, I guess I’m lucky. I still feel ashamed sometimes, and very self-conscious if people stare or remark upon it loudly within my hearing but without acknowledging me (which happens more than you’d think). Generally though, I don’t mind people seeing it, I don’t mind talking about it, and have little difficulty expressing myself – but for others I know that it is a far more difficult and painful process. So who am I to begrudge them the opportunity to try? It’s a lot more than skin deep, this disease.

Here’s a link to the postcard business.

I’ll end this by quoting from Josh, who made a comment on one of my earlier blogs. I don’t know Josh, but his story is very telling and I thank him for sharing it.

While I only have two “spots” of psoriasis–one of which is a big, angry red, often bleeding, plague looking circle on my right upper arm–they really negatively affect my life. I live in NYC, where beauty is king, and have stopped going to the beach this summer as I don’t want to endure the stares and questions (“Dude, are you like dying? Is that AIDS?”). Although I am in top physical shape, I never take my shirt off anywhere which precludes me from playing basketball–once a passion of mine–anymore.

SHEDDING LIGHT AND SKIN – Treatment Update 2

Treatment Update 2

Tuesday 10th July

I quite often begin my Tuesdays by allowing a group of women to subject themselves to the unenviable task of perusing my naked body for signs of improvement. And when I say naked, of course I keep my undies on (casual pant selection of a Tuesday is perilous pastime in Hadoke Towers). I suspect they make sure they have a very light breakfast, poor things.

The dryish but manageable skin on my arm.

But do you know what? It’s better! Not better as in cured, but there’s an improvement since last time. I’m very happy with my skin (so happy, that apart from some Doublebase moisturiser when I remember, I’ve not done much to alleviate its symptoms of late). It’s not painful and whilst it is a bit dry, it’s a softer, more elastic, peeling variety (like that found after overexposure to the sun) than the sharp, crackly shards that are itchy and leave painful little bits of rawness in their wake. It’s certainly nothing like as messy or embarrassing as it has been. My wife, though, quite rightly points out that I’m still covered and discoloured and certainly not well-looking. It’s all relative, but I mustn’t rest on my laurels otherwise I’ll be accepting a level of ill health that really shouldn’t be countenanced. Psoriasis is such a sod that one is usually grateful for minor respite. Well I shouldn’t be, and having someone who loves you giving perspective is very helpful. It’s not asking too much to desire good health, but we of the Psoriasis Club are so happy to not be totally stricken that we tend to feel bad asking for anything more than mild abatement.

My medical carers don’t need asking though: they know. Long ago Dr McBride was the first person in my life told me that we’d get rid of this: and in such a way that I believed her. I still do, and her approach is methodical and she keeps me informed at every level. She once, having spent 30 minutes with me, then took another hour when my wife arrived, often having to cover the same ground she’d just gone over, explaining the ramifications and possible causes of my hospital stay to keep me and Katherine properly informed – and did so with both patience and clarity.

Today Dr McBride cautiously asked how I was feeling and was pleasantly surprised by my sunny response. She, in turn, shone some healthy light on my bloods which show my cholesterol has fallen even lower that last time (see Update One); to a record breaking 4.6 on the cholesterol scale. Astonishing. This can only be due to the dietary and exercise improvements I have made: low fat, no sugar, easy on the carbs, no booze … nothing revolutionary. And I have been feeling better. I hate going to the gym – ten minutes lasts forever on a rowing machine and every single second manages to be painful and tedious at the same time. Like sitting on a spike watching Ken Barlow reading the collected works of Ed Miliband. But I’m looking better and feeling better. My positive attitude seemed to please my physicians.

I didn’t just bring good vibes. I brought questions too. My treatment regimen is still to be decided, but today I am told that my funding for biologics has come through; these are apparently “the Rolls Royce” of psoriasis treatments. They are delivered to your door

My leg, today. Not a normal leg, but not a bad one. You don’t get to see my pants though – get yourself a medical qualification to earn that pleasure.

because they have to be stored very carefully before being injected into your body. I hope you get to tap the syringe like a scientist in a film before you do it; that would help combat the dread of needles. It may not come to that however, as it turns out that meddling with my immunity may not be the way forward. I was previously on Fumaric Acid Esters, which are immunosuppressants (because psoriasis is one’s immune system being anything other than suppressed in the skin department). The problem is, they may have contributed to me coping so badly with a throat infection that the resultant, painful outbreak was Biblical.

Dr McBride has recently been at a conference where another group of doctors revealed that they were eschewing immunosuppressants – hitherto the in-season psoriasis cure sported by all the chic lepers about town – altogether. The cure could be making the body more susceptible to the trauma that causes an outbreak in the first place. It’s a Catch-22 situation, like discovering that chocolate and bathing in lard might ease the symptoms of acne. So whilst I made great progress with the Fumaric Acid Esters they were like a pea shooter on an elephant when I had a sore throat (which, indeed, they may have contributed to the ferociousness of). Biologics, though they work slightly differently and are spoken of in hallowed terms, follow the same principle. So, is there an alternative, that doesn’t involve suppressing the immune system? Yes – acitretin for the skin, with a permanent course of antibiotics so that I never again suffer a sore throat of the kind that clicked my skin switch so alarmingly. Acetratine, though, has its own drawbacks, which include heightening cholesterol and increasing fatty deposits in the blood, both of which I have a high disposition towards anyway. Typical. “You’ll be telling me it makes people start going bald next,” I said jokingly. Oh, apparently, that’s not so much a joke as an accurate medical possibility. Why not prescribe me something that makes me bang on about Doctor Who too much and rubbish and dancing just to really rub it in?

Dr McBride knows I am off to Edinburgh for a month, so is inclined to just keep on top of the disease with my current treatment for now. At the conference she and her colleagues presented their findings about low Mannose Binding Lectin counts and I believe used the photos that were taken of me in hospital as part of their presentation. “Don’t worry,” she had said, when asking my permission to use them “they won’t see your face”. I think I hid my disappointment well. I don’t do extra work, but in the interests of medical science I’ll allow a rare, uncredited appearance – I fancy it’s more like the Bruce Willis cameo in Ocean’s Twelve than the no-mark anonymity of a crowd artiste. I have an appointment to see the immunologist upon my return from the fringe. Dr McBride had tried to speak to him to get a simple yes or no in regard to my suitability for biologics, but apparently my case isn‘t as simple as that. What a surprise. So that’s something we must pursue in a month or so. For now my ciclosporin dose will be upped by another 25g a day to 150 grams both morning and night, and it seems to be keeping me under control (note that I started it on a very low dose of 125 grams twice a day, before going up to 125g in the morning and 150g at night).

In the meantime, more bloods, and a visit to the joint specialist next week, to see if the back aches I awake with are the result of – as I thought – entropy and bad posture, or yet another jolly addition to the roster of psoriasis’s co-conspirators in its dastardly mission to spoil my day (it and arthritis get on very well, as those of you who recall Dennis Potter’s buckled hands will remember). My stiffness may very well be completely unrelated to my skin, but we’re checking everything just in case.

It’s the gift that keeps on giving isn’t it?

 

SHEDDING LIGHT ON SKIN – Treatment Update 1

So this is how this blog will work. I’ll intersperse the opinion and reminiscence blogs with a diary of the treatment I receive.

Treatment Update No 1

Tuesday 26th June

I am an outpatient at the Royal Free Hospital and have been since 2010. I am seen at least once a month. How this came to be and what progress I have made will be covered in future blogs.

The queue of medicine just waiting to help me upon discharge from hospital last month. As a side issue, note the beigeness of my sofa (not to be under-estimated).

I am bright and early for my Tuesday appointment having been here yesterday to give yet another blood sample. A vampire with a taste for Chateau Neuf de Hadoke would feast indeed should he happen upon the blood banks of this establishment. Between that and the amount of skin I shed, a canny hospital porter could probably rebuild and entirely new Toby if he had the requisite levels of time and insane zeal, and a stockpile of corduroy with which to clothe his hideous doppelganger and thus make it indistinguishable from the original. I’m very sqeamish even though I’m having this procedure regularly. So regularly in fact, I walk in with a swagger only to notice the nice lady taking my blood is being overseen by someone who is clearly supervising her. My needle-wielding novice looks at my paperwork with some unfamiliarity and then cheerily opines that she isn’t as comfortable with the manual cuff that has go be tied (as opposed to the – um – automatic one that has a mechanism which slides it into the correct vein-bulging tightness). As if to reassure me of her lack of comfort, she then fails to apply it. Twice. This only takes a couple of seconds and is done with charm and politeness, with the overseer in total command, so I do not write this as a complaint. I’m really just fishing for pity. In short, I am pathetic and will probably find any reason other than my own cowardice and low pain threshold to explain why this week’s donation of plasma is especially harrowing. Tune in next time when I’ll no doubt blame the curtains or Thatcher.

But it is worth it. My bloods are very good, according to my consultant, Dr McBride, who as you will discover on future updates (set in the past) has already secured her place in Heaven thanks to the expertise, clarity and empathy with which she has dealt with me over the years. It is a disease where the bestowal of kindness and instilling of a positive attitude in the patient are as helpful and important as moisturiser, good health and a hoover. She says, brightly, that my wife will be very pleased with the state of my claret. This is a good thing as my wife is fit and healthy and doesn’t want me to die. Dr McBride says I have a fabulous wife and she isn’t wrong, and her readiness to include and answer Katherine (who poses quastions that I am too dumb to raise) is a further indication of the exemplary manner with which she dispenses care.

My legs, today. If viewing this in public, remember to refrain from pleasuring yourself over this delightful image until you get home.

So much for the humanity though, what about the science bit? Well, my cholesterol levels are at the lowest yet even though I am on Cyclosporin (which traditionally heightens it)  and are at 5.0 on the, erm, Cholesterol Scale. I have been hovering at around 6.5 which is unhealthy (I have a family history of high cholesterol and a personal history of pizza, fags and Chablis). 5 isn’t great, it’s the top recommended level, but this is comparatively good. Statins have been advised (they help with psoriasis too) but are not allowable yet as they and Cyclosporin are the Rudolph Walker and Jack Smethurst of the drug world (they do not get on)*. But good: the cholesterol has seen some improvement since I have started exercising and taking wheatgrass every day. I mention both, but have no proof that the latter and my cholesterol drop are linked, I merely mention it as a possible contributory factor. Indeed, my general diet has been improved: lots more oliy fish and a less carbohydrate and cheese.

Now then, my dear old booze. When I was suckling at the breast of Bacchus pretty fastidiously, my liver enzymes were high. Too high (157 on the Bad Liver Enzyme Scale – they recommend around 50-60 I think, but mine goes up to 157!). Having had a bit of time off the vine-teat, I am back to a safe level of 51! It’s almost as if that when doctors tell you to drink less alcohol and exercise more, they might be onto something. I never said life was fair.

I wasn’t on Cyclosporin before my recent, hospitalising outbreak, I was having great success with Femeric Acid Esters. A high dosage, but I tolerated the pills and they really made my outbreaks retreat. They could not, however, do anything about the recent impetigo napalm that erupted over my body after a bout of streptococcal throat infection. This is because psoriasis is not so much a complaint of the skin as a furious epistle from a disgusted immune system of Tunbridge Wells. When most people get a throat infection their immune system arms itself and heads off to the tonsils. Mine adopts a more scattergun approach and decides that regenerating the skin at 8 times the usual rate would be the best approach. It’s like an emergency happening and the wrong alarm being flicked. Part of the investigation into this outbreak of mine has led to the discovery that I have low Mannose Binding Lectins. These are part of the innate immune system and should be at about 4 or 5 on the, erm, Mannose Binding Lectin Scale. Mine weigh in at an England-at –Eurovision score of 0.5. This, apparently, is interesting, and warrants further investigation from the immunologist. We await his summons.

Cyclosporin has been introduced into my diet to knock my recent outbreak on the head, but should only be taken for up to two years. Dr McBride really only wants me on it for three months maximum, for various reasons that are both medical and forgotten by me. There are options for new treatment – including biologics which are fortnightly injections I’d have to self-administer. This would mean that the side effects of psoriasis would not only be flaky arms, itchy scalp and inflamed skin, but also crying like a baby.

Back in a fortnight: a 25g increase in my Cyclosporin dosage in the meantime (taking it up to 125g in the morning and 150g at night). Fasting bloods to be done again beforehand, plus a more visits to the derma-psychologist, which is basically me being allowed to moan and self-flagellate to someone who has spent years getting qualified and clever and empathic just to listen to a corduroy flavoured litany of self-indulgence.

These people should be canonised.

*this is a relatively obscure TV reference (the men bickered in much maligned sitcom Love Thy Neighbour). There will be the odd obscure TV reference in this blog. For whilst it is a blog about psoriasis and its inherent difficulties, it is my blog about psoriasis and its inherent difficulties, so there.

SHEDDING LIGHT AND SKIN – EPISODE ONE

EPISODE ONE : INTRODUCTION

A blog about psoriasis.

Please read the disclaimer for what this is and isn’t, if you haven’t already.

I Have This Thing …

I have recently come out of hospital. Actually, it was the first time I have been in one overnight. Whilst I have lived with this thing since I was about eleven, and whilst it has often broken out quite spectacularly and certainly caused me upset, physical pain and impairment, this latest occasion, but eight weeks ago, was the worst I can remember.

Maybe it was because I had been doing so well. I have an excellent consultant and am a regular outpatient of a Centre Of Excellence for the study and treatment of psoriasis. Thanks to the kind cajoling of my wife, I have timetabled regular treatment around my itinerant lifestyle. For too long I had simply lived with it: lived with large red patches on either side of my nose, with leaving a dusty layer of powdery skin imprinted on anything I sat or lay on, or looked in the mirror with a resigned sense of shame and self-pity. So a couple of years ago I went on the offensive, and have been given excellent care and, more importantly, time to ask questions and be appraised of the nature of the disease and the treatment I have been given. Prior to then, I had tried various herbs, needles and unguents, which, like my current regime, will be given plenty of coverage in future instalments of this blog.

This is what I was like when I came out of hospital. Those aren't my shoes.

One Tuesday morning, I went to see my consultant and as she perused my unusually smooth outer shell (knees and ankles excepted) she was pleased. I like it when my consultant is pleased, especially as I credited myself with the progress I had made: maybe I had thought positively, or was looking after myself, or had swallowed my medication in an especially effective manner. Consultants are clever people and I felt like I had handed some genius professor a splendid piece of homework when actually all I’d done was take off my shirt and trousers. Her verdict:  I was to go outside and not come back for quite some time … three months.

Extraordinary. I had been coming in pretty much every month since I had first thrown myself upon her mercy. I had remembered saying to the doctor who assessed me on my initial visit that it wasn’t “looking that great today”. When she examined me she gave me the impression that I was somewhat underestimating the severity of my condition. Either that or she just thought I had an especially horrible body irrespective of the flaky blight that covered about 65% of it. But that was then, this was “come back in three months, you’re doing very well, have a star on the blackboard and a flump.” OK, not those last two, but I bet the NHS would have a higher approval rating if they introduced a flump-based reward system for good health.

Anyway. I looked forward to three months of not having to pop across town before hiking all the way to Manchester, thus leaving the house at 7.30am with overnight bags and my laptop and lots of other annoying, luggable stuff, bedecked in extra layers anticipating the stiff northern inclemency but wholly unsuited to tube travel. The discomfort of psoriasis is active and palpable, and one has to consider what clothes one wears for reasons of comfort and visuals: a too dark jacket can lead those around you to think it’s snowing. The pain is a constant presence that we may become inured to, like engine noise is by slumberers under the Heathrow flight path, but it sours, distracts and tires us insidiously, and most of us resign ourselves to levels of physical and mental stress that many people would find unacceptable and probably only experience when punching the telly because Baroness Warsi is saying something thick on Question Time.

Three months. Gone! No, not so much, as it turns out, not three. Nor two. In fact, two weeks later I was back in, and this time I was admitted to hospital for a relatively lengthy spell, in order to control an onslaught perpetrated without prejudice or undue subtlety. And what had set off such a total (about 80% of the surface area of my skin) outbreak of this nasty affliction; a tarnish raw and sore, yet dry, cracked and painfully parched? A sore throat, that’s what. A little sore throat.

Next Episode: A Scar Is Born

SHEDDING LIGHT AND SKIN – DISCLAIMER

A personal blog about psoriasis.

DISCLAIMER

This is a personal blog by someone with no medical skills, knowledge or aptitude whatsoever (although I was once in an episode of Holby City, and I survived so, you know, just sayin’…). I am simply recounting my experiences as a sufferer of a disease I see discussed very rarely. I know that in the search to tackle this dreadful blight, there are all sorts of debates about homeopathy, diet, traditional medicine et cetera: I’ve explored various avenues and had my fair share of successes and failures. No-one has yet managed to wrest me from its grip, and I’m not especially interested in debating the merits or otherwise of refraining from cheese or bathing in tar. This isn’t a place for such arguments, so I’m unlikely to publish any feedback strongly advocating one approach over another. I don’t want this corner of the Internet to become another battleground between the stethoscope and the hedgerow. Interesting personal stories of triumph, disaster or a slightly embarrassing moment on a bus, however, I will cherish.  Otherwise: it’s just my story. It might be interesting, it might help, or it might have a good joke about The Singing Detective in it. That’s all. I’ll update it as regularly as I can, usually when I have a writing deadline elsewhere that I’m supposed to be meeting.

For those who have stumbled here by mistake, allow me to introduce myself, I am Toby, I am an actor and comedian, and I have suffered from psoriasis for the past 26 years. I don’t know if talking and writing about this unsightly and often irritating condition helps, but it’s so desperate for attention it seems rather churlish to deny it. It is such an individual disease though, that I can’t stress enough that anything I say or try here is purely subjective and unscientific and is in no way intended to be advisory. And I know it’s not as bad as cancer or amputation, but on its own terms and in isolation, it’s bad enough.

My leg, generally.

Psoriasis is a dermatological condition caused by the immune system reproducing skin cells at 8 times the rate that they should. It manifests as red, sometimes scaly patches on the skin (commonly on the elbows, knees and scalp), and afflicts about 4% of the population. I am one of the 4%, and these are my experiences. They will take the form of an on-going commentary on my treatment mixed with memories from the past and no small amount of trite wordplay.