I Must Not Mis-Spell My Medicine (includes information on dermapsychology which may be useful for psoriasis sufferers).
Guess what I’ve just been spending the past hour doing?Going thorugh my blog archive and correcting the spelling of the two oral treatments I am taking. What joy. I had assumed they were spelt “cyclosprine” and “acetretine” and only an idle moment today spent reading the packaging of the medicine I have been swallowing by the bucktleoad for the past God-knows-how-long revealed that my orthographical assumptions have been malfunctioning with the same waywardness as Kelvin McKenzie’s moral compass.
So, for the record, I am on ciclosporin (pronounced sy-clo-spor-in), do you hear me? And acitretin. Ciclosporin, ciclosporin, ciclosporin. Acitretin, acitretin, acitretin. There, hopefully that will redress the cyberspace balance of my consistent cack-headedness (though to be fair, the internet rather presumptuously asks you if you mean “cyclosporine” when you type “ciclosporin” into Google, so I’m not alone – all the web in the whole wide world makes the same mistake that I did). That said, even I don’t know if this blog is called “Shedding Light AND Skin” or “Shedding Light ON Skin”. I am not particularly enamoured of either to be honest, and might just call it plain old Psoriasis Blog from now on (I’m probably typing this for my benefit only as I suspect the rest of you simply couldn’t give a toss what it’s called).
If you want to know what ciclosporin is by the way, have a look here.Like many a psoriasis treatment it was initially used for something else (in this case, kidney transplants) and by chance it proved to have a positive side effect on this beastly malady. Hopefully one day they’ll stumble upon the fact that people who consume industrial levels of champagne and Lindt chocolate show an upturn in their battle against the psoriatic ague and so Verve Cliquot and Dark Intense become prescribed on the NHS. Why not? Stranger things have happened.
I went to see Doctor Mazara today, who was keen for me to alert my … ooh, dozens of readers (unless that’s just you clicking on to the site twelve times Mum, in which case, stop it!) to the work she does at the Royal Free. She is, as I have mentioned, a dermapsychologist, who is available on the NHS for anyone who thinks that dealing with the psychological ramifications of their psoriasis might be a useful way of combatting it. She has certainly been helping me, and this initiative to encourage people to treat the disease as not just an afflictiom of the skin, but rather something that is inextricably linked with one’s emotional state, is certainly worth a shot.
There is more information, some contact details and FAQshere (PDF), and some basic info here. In my experience, GPs are happy for psoriasis patients to come in with suggestions because it is such a complex and specialised disease. If you don’t ask you don’t get, so why not give it a bash? You have nothing to lose but your pains.
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 specialistto 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?
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.
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.
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.
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
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.
If new to this blog please check out the disclaimer so you have a bit of context and aren’t tempted to email me suggesting I stop eating cheese.
A Scar Is Born
My unwelcome companion first appeared after a bout of tonsillitis for which I had been given penicillin.The GP diagnosed it as penicillin rash but my mother (who trained as a nurse) was unconvinced. She heaved a hefty medical tome from a bookshelf to double-check her theory and I was duly dispatched back to the GP with a note explaining it was probably psoriasis (guttate psoriasis to be precise, though I’ve never referred to it as that – but I confess that I sometimes substitute the “guttate” for “fucking” in less eloquent or sober moments). The GP had the haunted, pale look of a man who had encountered my mother before and knew it was best not to argue. I’d learnt long ago it was best to do what she said: and it turned out that hallowed professionals in neighbouring villages had as well. I was prescribed a tall, reassuringly old fashioned brown glass bottle full of thick, black tar that smelled of roadworks but looked like that stuff Dr Jekyll drank to stave off Mr Hyde’s increasingly frequent visits. It didn’t smoke, alas, but you can’t have everything. It was to be poured into the bath and this would see off the small, red dots that had spread over my torso and occasionally dried which allowed me to chip off a wafer of detritus with a satisfying pluck.
I was quite self-conscious at school: not just about my skin.It’d be easy to read this blog and think that every minor trauma in my life has been linked to psoriasis but that would be a mistake. I have always been a worrier (which is not unrelated to my condition): couple that with being somewhat weedy, pretty clever and drawn to performance and I was never going to be in the Top Five People Not To Bully At All Costs list. I don’t think I was even in the Top Two Hundred. I had also spent some time at a boarding school – a charity paid for it because my Mum was on her own, and so I didn’t exactly fit in, being cut from a slightly more humble (and probably hand-knitted by my Nan) cloth than my contemporaries. When Mum took me out of that place and I hit the local comprehensive at the age of eleven, my being in the vicinity of poshness for several years had bestowed an accent upon me which meant I didn’t really fit in there either. I say none of this for sympathy – I’m over it and having had both perspectives early in life has given me a more rounded one now – but the resultant emotional buffeting may add a splash of colour to my overall picture. Seeing as it’s believed psoriasis may be linked to one’s emotional state it’s worth mentioning – although often I was a cheerful chap who always liked performing, I was occasionally prone to glum moments and was often anxious about being liked and not getting into trouble.
Being the youngest of four children and wearing the hand-me-down clothes of the eldest of those (with fashions having changed in the interim),helped complete the mosaic of dweebiness that brought me undue attention from the more alpha males of the playground,who regularly zeroed in on the flared trousers I had to wear for school. This being the 80s they were a no-no: after all we were in the midst of a decade now renowned for its superb esoteric fashion styles. I was mocked by 12 years olds with mullets for goodness sake! “They’re not flared,” my Mum instructed me when I pleaded to have the trousers taken in “they’re straight legged.” I told this to the mockers. Of course, such a dazzling assault of logic stopped them in in their tracks immediately (for those with no irony detector, it didn’t stop them in their tracks immediately. Or even at all). In a similarly robust defensive tactic, Mum had told me to tell anyone who queried my seemingly measle-ridden body to explain that it wasn’t contagious, but rather a rash. “Yes,” said Karl Thomson during a school session at the swimming baths one day, “nappy rash”. Thanks Mum.
The tar, however, worked. Pretty quickly and effectively as I recall.And that was that, off it went, no disaster (except I got
told off a lot for not cleaning the bath properly afterwards). Only my head and my eyelashes stubbornly refused to behave normally. The scalp I’ll deal with in a future blog, whilst the eyelashes used to crust over with what looked like rampant sleep dust and went raw and painful when I (inevitably) picked at them. I thought I was blighted for life by crusty, yellow eyelids, but they’re such a distant memory that I’d forgotten about them until sifting through my memories for this blog. It’s a condition called blepharitis that hung about with me when I was a teenager but, you know, we grew apart and lost touch. I mention that only because I thought I’d never shake it and it caused me all sorts of worry and now it’s a dim, distant memory, consigned to the dustbin of history alongside other ghoulish terrors from my childhood like the imminence of nuclear war, geography homework and Phil Collins.
The rest of my skin was fine. So that teenage impetigo-dalliance was quickly put aside as a phase. It had been curious interlude then, a rather unnerving manifestation but not especially outrageous – I had other friends whose passage into manhood was accompanied by thick, boiling pustules of acne so considered myself a relatively minor casualty in the hormone war. It was soon forgotten and the rest of my teenage years were relatively trouble free (if low self-esteem, paranoia, sexual anxiety and heartbreak can be deemed trouble free: which, of course, they can with the benefit of hindsight and the amnesia thoughtfully supplied by old age and alcohol abuse).
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.
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.
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.