I’ve been a bit quiet on the old psoriasis front lately but it’s still there, lingering. I actually noticed that my arms aren’t in the greatest of shape yesterday when I went to Maidstone and the offices of Abbvie in order to talk to some nurses from all over the country about being a self-medicator. It was a 9 hour round trip but worth it I hope, even if the lady at reception was one of those people who regularly occur on my life who sees fit to correct me when I tell them my name: “Hadoke” I said, pronouncing it accurately. “Haddokey,” she replied as she read from her list, presumably thinking that I’ve got to 41 without knowing what I’m actually called. I mean, I know it’s a silly name and one that doesn’t sound how it is spelt but you’d think if anyone had the key that unlocked the secrets to its pronunciation it’d be me.
Anyway, the disparate group of nurses were speaking to patients with various ailments and I was there to explain my injections, how I administer them, how I feel about them, how I remember to do them, and my thoughts in general about my condition. All of those things have been well rehearsed here so I won’t repeat myself but an analogy that I came up with went down well and seemed useful. I emphasised that psoriasis isn’t so much a skin condition as an auto- immune problem and that when I get a sore throat it is a bit like a building detecting smoke – the alarms and sprinklers and everything go off everywhere no matter where the fire is. This is a similar reaction to when my skin goes into overdrive when my throat has a problem – my immune system isn’t targeting the throats, so my skin over repairs itself necessarily. Those of you with properly functioning immune systems get a more efficient response.
As for my progress, I’m still on Adalimumab every two weeks, with a vitamin D booster and the usual mixture of shampoos and scalp application for my head (still dusty unless I’m really on it) and Pro-Topic for my face (which is keeping it in check very nicely). I have been exercising and trying to limit alcohol with varying degrees of success (“Yay, I’ve had two weeks off the booze – why don’t I celebrate with a swimming pool full of wine and a bucket of gin?”). My arms are a bit itchy and slightly worrying even though my last check up (and bloods) were very positive. It never quite lets you relax this thing, but I’m not letting it get in my way.
I wanted to to an update in September entitled “Oh f*ck…” because after a year of being pretty clear I went on holiday, to the sun.By the time I came back, I knew that the tiny little flecks of colour on my skin, and the fact that I felt a bit itchy and uncomfortable, meant that my psoriasis was on the march again. I thought it might be useful to chronicle its unwelcome return to my too too unsullied flesh as it happened. But in a way, I felt that might aid it in its campaign to take root on my body again – plus I was a bit depressed about it – so I didn’t. Now, however, I have an approaching deadline for a play I am meant to be writing, so what better time to give you all an update…?
As we know, the sun can really help clear up the skin, so a week of Verona’s beautiful Vitamin E flavoured illumination, plus the resultant relaxation, would only be good.
I had been a bit worried by all the stuff I read in the papers about Doctors prescribing too many antibiotics and how bad that can be.So I asked Dr McBride if perhaps I should give my body a rest. She didn’t really think I should but said that if I was going to it would be safer over the summer when my likelihood of picking up a throat infection would be minimised. What she didn’t tell me to do was give up taking them just before gong on an aeroplane with all its recycled air and close proximity to other people’s germs. But I did. And so I picked up a bit of a streptococcal throat infection and despite the success I have had with my biologics, my arms – and gradually the rest of my body – started showing the tell tales signs of an outbreak. My body temperature also fluctuated and I was extremely agitated by the itchiness that dominoed with goose bumps all over my frame. At one point I thought that these metamorphoses would lead to a spell in hospital, as the last time I’d had a similar resurgence it didn’t abate until it totally wiped me out. I’m used to the odd period where the back of my arms or my elbows and knees have discolouration and dryness, but when the softer skin of the torso or that hardier suff on the back of the hands start showing signs of plaques I know I am in a bit of trouble.
This has been a bit of a bind.Just as there’s an argument that loving and losing is a hell of a lot more painful than never having loved at all, I was perhaps knocked sideways a little because I had started to take a pain free, smooth outer shell for granted. It looked like I was about to be plunged into a revisitation of the dark old days and so I got not a little distressed (which, of course, helps the condition to wage its war). Fortunatley, Doctor McBride wasn’t too concerned, reassuring me as ever that this was normal and that even if it turns out that the biologics aren’t strong enough to help me then there are other options and I mustn’t despair. For now though, the blame is firmly on the sore throat – so back on those antibiotics – and I’m continuing my treatment as before, but with a greater attention to the application of creams and lotions in order to manage this upsurge in plaques.
A couple of months later and I am still covered – but it is not as widespread nor painful as previous major outbreaks.It is a disappointment after such a period of fantastic progress, but it is certainly not as bad as it has been in the past. Everything is relative. I’m mostly stricken on the back of my arms, my knees and the back of my ankles, but it is not too flaky nor is is cracked and raw. I didn’t have to do to hospital and the itching has abated. So while I don’t especially like what I see, I know all too well that I could be feeling a hell of a lot worse.
In the meantime, the other side effect of the holiday is a massive rise in my cholesterol (8.5 having been at a brilliant – for me – 5.2)which is cause for serious concern so I have had to employ the services of a personal trainer and am actively eating and supplementing myself with things specifically designed to make this high figure drop. My blood tests in Decemeber will indicate just how happy a Christmas I will be allowed to have.
Lessons learned– (i) Don’t stop taking prophylactic antibiotics before getting on a plane and (ii) the Italians may well have a relaxed attitude to the consumption of wine and ice cream, but you are not an Italian (iii) it could have been a lot worse.
I had a lovely holiday though. Sun, sea, sand … the scabs didn’t come till later!
First up, cliffhanger resolutions – my fingers seem to have got less painful,and no arthropathy was spotted in my X-Rays. In one bound I was free (but whilst on the starting blocks I was clearly a hypochondriac)! It could be that my new treatment regime has helped … whatever, the finger joints are not a current concern, so thank goodness for that.
The time has come to commit to the most pointy and extreme of all the treatments of psoriasis.No more creams. Light treatment – not on your nelly. Pills – your boys took one hell of a beating. It’s time for me and adalimumab to get acquainted. Dr McBride pronounces it as if she’s been saying it all her life: I think she’s been practicing at home. I’ve been practicing at home and I still can’t say it. It is used to treat arthritis, Crohn’s disease, all sorts, and with psoriasis one has to have found all other treatments ineffective before being allowed to use it (and special funding has to be applied for). I am a drain on the economy and for that I apologise. I don’t drop litter though.
A quick explanation: biologic medications are specifically designed to act in certain ways to correct a malfunctioning part of one’s physical make-up which in turn causes a disease. Insulin is probably the A List celebrity of the biologics world. As for my particular example, the impossible-to-pronounce adalimumab, I shall quote from the Psoriasis Association and hope they don’t mind : Adalimumab (Humira) works by blocking TNF-alpha, a ‘chemical messenger’ that signals to other cells in the immune system to create inflammation. People with psoriasis have too much of this chemical in their body, and adalimumab helps to lower this to a more normal level, leading to an improvement in symptoms. Adalimumab is an immunosuppressant, meaning people taking it are more at risk of infection. Because of this, people will be tested for active and latent (hidden) infections, such as tuberculosis (TB), before starting treatment, and are advised to have regular flu jabs.
So just before Christmas, Senior Nurse Annie, who is the biologics guru and an extremely nice person, brought me into one of the rooms of the day care centreand talked me through the administration of my own injections. This sounds scary, and I’d love to play it up and make it seem so because then you’d all think I was terribly brave. But, it isn’t. You get a big thick plastic pen device, not unlike Doctor Who’s sonic screwdriver, and you unscrew a couple of handily labelled caps. In fact, they’re labelled 1 and 2 but I was so inept and struggling with #1 that Annie said it didn’t matter what order I did it in so I threw caution to the wind and pulled #2 off first. I don’t play by no rules you squares. The injections come with their own antibacterial swabs, and on day one I was to have two doses – the first administered by Annie, the second by me. I could inject into my stomach or the top of my leg. The leg seemed the best option – sturdier and less wobbly. One has to grab a wodge of skin to make it firm, swab the area, push the pen device on and depress the button on the top – like clicking a Parker before writing a letter. Except you don’t stab yourself with a biro – unless you’re a nutter or have a tight deadline for Doctor Who Magazine. There was a bit of pain and one has to wait until one hears a sort of fizzing release sound before removing the thing. I did the second dose myself and it was fine, although it does produce a little spot of blood.
As with any treatment, it is not all roses.If ever I decide to become a pregnant woman I will have to be very careful, and side effects can include upper respiratory tract infections, abdominal pain, headache, rash, injection site reactions and urinary tract infections. These joyous visitations usually occur after the first dose and decrease after that so I think I’ve managed to avoid the worst.
I also agreed to fill in various questionnaires.One of these was a slightly more detailed version of the PAASI test which studies the impact of psoriasis on the sufferer’s everyday life. The second one was a bit more grown up, and Annie thoughtfully vacated the room as I grappled with questions about erections and all sorts. Still, I hope the answers are useful to them and that my candour has helped the cause of medical science (whilst going on record that my erections are perfectly alright thank you very much – indeed, the two I’ve had over the past six months have been quite splendid).
The next dose of adalimumab was due Christmas Day (one week later) and the next a fortnight after that, so I went home with two lots, the transport of which required a cool bag supplied by the hospital. I did my own on Christmas Day but asked my retired medical professional of a mother to supervise. She did, but it didn’t stop her telling everyone afterwards how pathetic I had been. She wouldn’t have lasted long at the Royal Free.
It takes a few weeks to kick in, and I am being weaned off the ciclosporin in the meantime (75g morning and night). The injections will be done at home, fortnightly, and to that end the medicine is delivered to my home (saves the NHS paying VAT apparently), where it has to be kept in the fridge – which is why, I guess, they make it look like a pen rather than a mushroom.
And let’s hope it works, as there isn’t very far to go beyond this. I’m in the Last Chance Saloon, and there’s only one thing left behind the bar that’s doing to hit the spot (or in my case, massive amount of spots) …
Oh, and if you’ve popped by to tell me to eat hay or give up cheese, please read the disclaimer here before posting anything. I will publish any replies but not necessarily engage with them ; if you have your own cures or theories I am happy to air them, but won’t be batting opinion back and forth – this is a blog about my personal experience and the medication I am receiving.
I cried during Skyfall. I should have known something was amiss then.And I didn’t just cry at the emotional -oh-no-someone’s-dead bits. I got teary when anything with the vague whiff of a fan pleasing nod occurred or if Daniel Craig did something quintessentially Bond-esque. Shaken Martini (weep!), cool old skool car gets revealed (unleash the waterworks!), Miss Moneypenny (lachrymosity alert!).
I alluded to various personal and work issues in my last blog too, and yet even those now seem as if they are related to my somewhat discombobulated state. I usually take such things in my stride and frankly my profession is riddled with frustrations and disappointments, so why have I been feeling different lately? Well, I found out last night …
I had an appointment on Tuesday and saw a very charming locum doctor (Dr McBride was indisposed) who was rigorous in his examination, had a gently probing questioning style and was rather regretful when the time came to inform me of my cholesterol levels. I’d predicted a slight rise from the alarming 6.7 I was at but even I was bowled over when a colossal 8.8 had registered from my latest blood sample. That won’t do. One of the reasons is that I am currently on two medications – ciclosporin and acitretin. I am supposed to be reducing the ciclosporin and increasing the acitretin, but because my skin hasn’t been great, I haven’t reduced the ciclosporin at the speed I should be. Each medicine has a cholesterol raising side effect. Taking both at pretty optimum levels (I’m on 25mg of acitretin – the maximum dose is 35mg – and 200mg of ciclosporin) raises my cholesterol twice! The fact that I’ve been eating American food and staying away from the gym probably doesn’t help but let’s ignore that for now and lay the blame squarely at the feet of my drugs!
I have also had an X-Ray to see if the pain in the three fingers of my left hand is psoriasis related arthropathy or something else.If it is it’ll be a relief to know precisely what it is that’s causing the often intense discomfort, but that relief will be sullied by the fact that I have arthritis. So let’s see. I would rather I didn’t have something else wrong with me to be honest. I’m only 38 and I feel like a laptop that’s just this second passed its warranty period – annoying things seem to have suddenly stopped working for no apparently good reason.
And so, last night, I did a turn at a medical do, where it’s safe to say that my comedic musings went down resoundingly adequately.Both Doctors McBride and Mizara (yes, Mizara, I’ve been spelling her name wrong!) were there and spent much of a precious night off talking to one of their annoying patients. Me. During our chats I learned that acitretin can cause upsets in one’s emotional state and can increase anxiety. Suddenly everything fell into place. I’ve been worried about work, money, life, but more so than usual and occasionally quite alarmingly (I have felt like I’ve been teetering on a precipice). And so it’s a relief to discover that it’s not me being weird (I really did think I was going a bit nuts). It’s the bloody pills. So as of today I am off the acitretin, and hopefully this’ll restore me to my usual calm, cheerful, emotionally repressed, buttoned up, grumpy self! It’s a relief as I’m not massively comfortable dropping industrial amounts of pillage down my neck morning and night, and my stomach has always felt a bit dicky since I have been taking all of this stuff.
I now have to consider – in consultation with my wife – whether I want to chance biologics; those A List, expensive drugs which are self-administered by injection. Frightening but with a reassuringly lofty, industrious aura about them. They’re injections for goodness’ sake; they are bound to work, surely, because you have to stab yourself to administer them. What would be the point in doing something so intensely medical, so brave, so … dare I say it, manly, if it just made me feel a tiny bit better? That’d be like trying to wipe a sniffle with a baseball bat studded with nails. Just sounding a note of warning, by the way, Dr McBride said that one in one hundred patients has an adverse reaction to biologics. With characteristic self-pity I remarked that that would probably be me then, and she said that that is what all psoriasis sufferers think and say. Bugger. Not only am I self-centred and paranoid, I am predictably so. Never mind – I am enjoying this because it turns out that I can blame the hallmarks of my disease for every twattish thing I do, say, think or feel now. That’s kind of reassuring. There are side effects to the biologics, but she won’t tell me about those in detail until I’ve decided whether to take them or not. I am to come back in a couple of weeks with my decision.
Crikey, that’s a first for this blog. A cliffhanger ending …