Tag Archives: Psoriasis Association

PSORIASIS BLOG – Treatment Update Eight

Treatment Update Eight

Early January 2013

Please read the disclaimer if new to this blog.

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.

 

The latest addition to my fridge

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 centre and 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) …

PSORIASIS BLOG – Radio Scar

RADIO SCAR

The day after my trip to Parliament  – 18th October – I went to USP Studios to spend a few hours chatting to a number of radio stations about psoriasis and the See Psoriasis, Look Deeper campaign. It wasn’t just me, as they need some people who actually knew what they were talking about to contribute to the discussion, so Helen McAteer from the Psoriasis Association and Simon Lawton-Smith from the Mental Health Foundation were there to lend a factually correct assessment of the condition and its ties to the sufferer’s psychology, whilst I moaned about the disease and repeated the same anecdotes like a boring actor plugging his tedious autobiography.

 

Helen McAteer of the Psoriasis Association, Simon Lawton-Smith from the Mental Health Foundation and some bloke whose principal skill seems to be the ability to talk about himself a lot.

I was very impressed with how intelligently the subject was handled by our interviewers. Some were live (the interviews that is, as far as I am aware, all of the interviewers were live: the undead are one of the many groups under-represented in today’s hegemonised media) and some were pre-records to go out later: some used all of us, some wisely dispensed with my services and relied solely on Helen, and a couple of foolhardy souls (BBC Radio Manchester and the syndicated Ed Stagg Show which goes out over a number of BBC Midlands services) just used me.

One notable thing that came up was that when we were doing our first interview, the interviewer was asked not to say that people “suffer from” psoriasis, which is what he had written down on his scripted intro. As it happens, during the taped discussion, he did indeed introduce me as someone who “suffers from” psoriasis, and had to do a retake at the end. Simon took the opportunity to ask me what my take on this semantic issue was, and I said quite bluntly that I “couldn’t give a f*** how people describe it” which immediately made me realise how people in my line of work are quicker to swear than people with proper jobs. But it’s true: the interviewer wasn’t being derogatory or pejorative; he was describing a patient with an illness. I didn’t take offence at the implication that I suffer. Why? Because there are issues of import around this disease that are far more pressing than pernickety verbal scrutiny. I know what he meant, and I answered accordingly. If someone says something deliberately hurtful about my physical appearance I will take offence, but not if someone who uses a description without using the vocabulary-de-jour. Who cares? And I know that the people who have decided we must not say “suffer from” have the best of intentions too, but let’s not get diverted by the, frankly, unimportant issue of how exactly it should be described.

I will be linking to a few of the interviews here, but it will take some time as I have to host them on You Tube and doing so involves putting them together on my wife’s Mac which is as slow as an East Coast train from London to Newcastle when there’s a slight breeze and it has rained in the past three hundred and fifty years. The links below will be green when the pieces are ready:

BBC Radio Manchester (me and Heather Stott)

The Wireless on Age UK (me, Helen McAteer and Simon Lawton-Smith)

BBC East Midlands Syndicated (me and Ed Stagg – a long interview this, 21 minutes)