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