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.