Tag Archives: Ciclosporin

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?