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.
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) …