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.
You’re correct, I haven’t been, even though things have being happening for the undoubted Dermatological Disaster About Town that I am.I’ll update about a couple of events I have been to shortly, but if you’re in Manchester towards the end of April there’s going to be quite a lot going on. At the moment it just says “Psoriasis Thing” in my diary – hopefully more enlightening info will make its way out soon.
Anyway – treatment continues. I’m still coming away with a full bag from the chemists(so may I heavily recommend the yearly £104 prescription pre-pay thingy? It’s saved me a fortune). I still have Pro-Topic for that stubborn bit on my face which lurks under the surface and occasionally sprouts up requiring a quick splurge which sends it packing really quickly. Having had awful, livid, stubborn, painful and embarrassing scales on either side of my nose for most of my 20s when I should have been all young and handsome, I really should remind myself now and again of how miraculous a change this simple application has been (and it was only prescribed once I was seen by Dr McBride at the Royal Free – provking a faith in her which I retain to this day).
My knees are a little red in places but my arms are the worst.They’re nothing like they were though and a consistent regimen of applying Doublebase moisturiser to my face and arms morning and night keeps me flake free even if I am a little pink when you look closely (but if you are, I’ll be certain to ask you why you’re doing it!). I have a tube of SebCo (I’ve done the “it’s the most Olympian of all the psoriasis ointments” joke already, surely?) which requires a bit of discipline – application to my arms and scalp overnight for a week. I had a go at this last month and it really did help – especially with my persistently dusty scalp. But the tube burst and so when I squeezed it came out of both ends – it’s bad enough having tar smelling goo on my body (I have to wear special bandages and headgear to protect the sheets) but I don’t want it all over the carpet. So I have a new tube which I will squeeze more carefully, but that means I need a week at home really. I don’t want it exploding in my bag.
My bloods in december were the best they have ever been – so good in fact, that Dr McBride had to look them up as they hadn’t (as is normally the case) been sent to her due to all the abhorrences and anomalies they usually contain.Liver function (the one affected by booze) was the healthiest since records (i.e. my Royal Free medical notes) began. You’ll be surprised to learn that I celebrated that good news by having a very convivial Christmas and have continued with indulgence and bad habits ever since. So my next ones will probably be awful (I was too close to my appointment with the last lot so won’t get the results till next time). We’ve been here before haven’t we?
If physically I have been found wanting, mentally things are looking a lot better.Dr Mizara has been great a providing perspective and coping mechanisms so we have started to review the progress I have made under her and to stagger our meetings a bit so I am seeing her with less frequency. I will blog separately about psoriasis and mental health as it deserves a bit of proper explanation.
In the meantime, I am still injecting myself with adalimumab, which I make far too big a deal of apparently. I think I am being all big and brave (I’m stabbing myself and I have a big, scary looking industrial bin thing to put my used needle-pens into) but my better half just guffaws. Still I feel big and brave and imagine its the sort of thing Rambo would wince about if he had to do it. I’ve got the double whammy of Nizoral and Coal Tar shampoo which, like everything else, is a good combo if I am disciplined but an itinerant lifestyle and slapdash nature mean that I occasionally get caught out and regret not wearing beige. So I am not, therefore, convinced that the Dovonex Scalp Application is doing me much cop but I am slapping that on, and sometimes the Exorex Coal Tar lotion as well because it’s better to be belt and braces innit (though in my case it’s Belt, Braces, Safety Pins, Piece Of String Tied Round The Waist and Unpleasant Smelling Industrial Trouser Keeper-Uppers That Have To Be Applied Twice Daily And Still Might Not Keep Your Trousers Up Entirely).
I have taken a course of Erithromycin as I was sunning quite throaty and would have been a bit susceptible to streptococcal throat infection from a long flight and a weekend in an LA hotel, and am now back on the preventative Cefalexyn. I am a bit worried about the fact that I have to keep knocking back antibiotics and must as Dr McBride about it next time. It doesn’t seem natural, but of course a strep throat infection is a trigger for a massive outbreak so I want to be avoiding one of those at all costs.
In summary then – General Synopsis: no pain, occasional dry patches, lots of medicine. Forecast: I need to lose a bit of weight, do some exercise, and be more disciplined with my medication.
Cue David Byrne – “Same as it ever was, same as it ever was”.
My previous entry – which was just letting off steam really – got generally positive repsonses which was a surprise (well, the volume of feedback was anyway).There was the odd person Tweeting who said they had negative experiences of the NHS but didn’t go into detail. I have had similarly grotty encounters, but to me the conclusion from that is that the NHS needs change and support not obliteration. Frustratingly I never ascertained whether the critics had read my blog or just reacted to the positive headline that was being reTweeted. Such necessarily pithy excahnges reward no-one, get nowhere and are ultimately a waste of energy and sadly reflective of the level of discourse we now engage in. “I like the NHS”, “I don’t”, “Oh”. Come back nuance, all is forgiven.
Anyway – I am being sent gifts. I have done a consultation for Exorex who have got me to write an E-book chapter for a campaign they are spearheading (I have covered this is previous blogs). They did a photoshoot to publicise this and the results pepper this blog entry. I also got a goody bag of their products. I have not used them yet, because I was also recently contacted online by a lady whose company have launched a cream called Dermalex which she sent me and so I gave that a go as I’d left my other stuff in a different city. Is it any good? No idea, as I am of course taking other things and am not in the habit of making endorsements, but it certainly isn’t uncomfortable and greasy like many creams, and my psoriasis hasn’t exploded nor has my head fallen off, so there are certainly positives (and when someone gives you something it is nice to acknowledge the fact). Fun though – Hollywood stars get free Rolex wristwatches: I get showerd in unguents and emollients. I’m an A List biological disaster. As well as the chapter, your celebrity leper has also written a piece for a forthcoming Guardian health suppliment : it should be out fairly soon.
Which brings me to my latest health check. I am still taking the adalmumab and so have to have regular blood tests … and I resolutely failed the last one.Drinking without due care and attention I think. My liver fat count is at about 147 (it shouldn’t be higher than 61) and my cholesterol is at 8 (highest should be 5). I will have the exact figures later (they’re in a different city along with my creams and, more frustratingly, my headphones!). So this means no more booze till my readings are substantially reduced (which will take a few more months of check-ups and blood tests). The thing is, I have only been drinking at the end of the night (I never do it before work) and I have been going to the gym, exercising at home and dieting. I am a stone overweight and despite laying off cheese and carbs and, oh you know, joy, my belly is still unsighly in its distendedness. I’m even forcing down fruit , vegetable and flaxseed smoothies for breakfast but it isn’t shifitng.
Nurse Annie popped in when I was lamenting these various woes and said that abalimumab can slow the metabloism and manifest as a slight paunch in the belly, so that is contributing to my difficulty in getting rid of this stubborn stone. Great: my treatment once again seems to be responsible for something about me that I dislike. So I have to step up the dieting and exercise. And not drink. Remind me, what’s the point in being alive? I’m knocking back a peppermint tea as I type this : oh yeah, feel the buzz. I am at a stage in life where a treat is having a second Ryvita. My disposition therefore, is hardly sunny. I’d kidney punch Bambi for a G & T and a slice of bread (yes, bread, that’s not asking too much is it? Oh, it is). My skin, though, is in pretty good nick.
Which provides a timely reminder about the link between psoriasis and mental health (courtesy of the Psoriasis Association ; follow them on Twitter @Psoriasis UK):
(Gravelly Voice): “Previously on Toby Hadoke’s Psoriasis Blog”:Skin. Ow. Red patches. Flakes. Poor mental health. Bad puns. Many attempts to make severe dermatological conditions vaguely amusing. One or two attempts to make serious dermatological conditions vaguely amusing that have actually worked. I have been seeing Dr McBride (dermatology consultant) every four weeks and Dr Mizara (dermo-psychologist) ever fortnight or so: both are based at The Royal Free Hospital Hamsptead. I have been injecting adalimumab, a biologic treatment, since just before Christmas.
“And now, the continuation”.
Bloods, cholesterol and liver were generally better last month but as with Norman Tebbit’s current application to join the human race here in the 21st Century, there’s still plenty of work to be done before anything can be signed off.Plus, I’ve not been as good or disciplined this month. The patterns of exercise, healthy eating and intelligent application of alcohol are pretty much what you’d expect (i.e everything I like doing is bad for me and everything I hate doing is good for me). My scalp is still the most stubborn area, and Dr McBride says that alcohol can really affect the scalp as it has various yeast-based side effects and that helps to maintain a healthy harvest of scurf across one’s cranial landscape. Essentially Nizoral Shampoo clears the yeast from the face and scalp and then the coal tar shampoo one uses more regularly keeps the psoriasis at bay: but the more yeasty you are, the harder that makes the coal tar’s job. Still, if anyone wants some bread that tastes of the road then gather up the powdery residue all over my head and shoulders; add water; prove; knead and bake ; et voila!
(I can’t believe I just typed that but it’s staying in).
“We haven’t quite cracked you yet have we?” said Dr McBride with as much ruefulness as someone whose glass is permanently half full could possibly muster. She’s very cheerful for some who has to look at bodies whose outer membranes look like they’ve been through a spaper shredder all day: there’s no doom and gloom at all in her assessment but rather an acknowledgement that there is still work to do. All things considered I am doing OK but not brilliantly: there are patches of bad skin on my arms and hands and a little on my sides. All things considered, she says, I am doing well, even if that “doing well” is relative (and in this case, it’s relative is a remorseless bastard).
In my other sessions Dr Mizara notes that my skin reacts very acutely to emotional stresses. I wasn’t aware that mine was especially sensitive but she suggests that it is. Part of me finds this really annoying (Pathetic skin, pull yourself together you big wuss!) whilst another sort of secretly quite chuffed (Oh, I am special am I? Like a poet or something?).
I filled in my last questionnaire for Nurse Annie about the effect that adalimumab has on my behaviour in certain carnal areas.Some things must remain a secret from even you dear reader, but all in all I am as sturdy/impotent, rampant/frigid and effective/disappointing as usual (delete as appropriate, depending on how you’ve found me to be). Quite what some anonymous boffin is going to do with my regular sex reports is anyone’s guess but I hope my candour is of use to medical science. Or at least provides them with a good laugh.
I put on weight in April/May. Dr McBride said I had to see how I’d respond if I did exercise and didn’t drink for a month –but no pressure, she said. It’s not a test and if I can’t manage it I mustn’t beat myself up. I reassured her that she’d not be disappointed with me and that I’d do my best.
Turns out, my best was shit.
Current Treatments: I am still splashing Dovonex (calciptrotriol) scalp application on my bonce, Silkis (a vitamin D cream, basically) to my arms and affected skin patches, and washing my hair with a mixture of Nizoral and coal tar shampoo (see above). There’s pro-topic for my face too but apart from some dryness underneath if I let my beard grow too long I’m remarkably unblemished on the old fizzog. I also take a massive Vitamin D booster every fortnight.
I’m overweight even though I have been eating as well as possible since June (bearing in mind I live out of a bag and am often reliant on fast food) so I need to do something about that fairly sharpish. I’ve not experienced the great breakthrough that I had hoped the biologics would be – it seems that there are no easy answers, and I certainly can’t expect to be given any until I’m in slightly better shape than I currently am. Psoriasis is a condition that requires some assistance from its host to give it its marching orders; I can’t really complain that I’m not healthy if I drink as much as I want, have a weakness for chilli peanuts and think that taking the stairs occasionally is a workout.
As I write this Dr McBride has asked to see me in a fortnight. I’ve gone from once a month to every two weeks now which should be an indication that things aren’t as good as they might be. And I’ll be honest, that’s a tough thing to bear … it’s an equal opportunities condition ; for every Stride Forward there has to be an all Two Steps Back shortlist. That said, she is seeing me because she is being very supportive at a difficult time: I went into my last appointment in the doldrums and emerged ameliorated and hopeful. Likewise, my latest session with Dr Mizara left me feeling emboldened and determined when I’d gone in full of self-doubt, self-recrimination and negativity.
Both doctors have provided reassurance and sympathy as well as medical insight.They’re convinced that the mental issues I had over Christmas were induced by acitretin and when I fretted that most people probably don’t need to be seen as often as I am by Dr Mizara, Dr McBride showed me figures that indicated many had had far more sessions, and that when everyone emerges from the derma-psychology tunnel the light is bright and warming (and probably ultra-violet too because it makes your skin better). Indeed, she even went to the extent of calling Dr Mizara (who was doubtless busy elsewhere) down to back up her figures and provide an extra ear; once again the call of duty was answered long ago and continues to soar so far above and beyond that I’m surprised I can still see it.
It may just be that I need a skin and brain transplant and I might finally get rid of this thing. I hadn’t done a blood test this week as I’ve been all over the place so I did one after seeing Dr McBride. I dread the results: she’s ordered a streptococcal test in case that’s been a contributor (I have had the odd throaty scare) but she’d be better off looking for traces of Sancerre. Since then though, it’s been healthy living, no booze, and plenty of exercise (bear in mind that “plenty” for me probably means a light bout for most, far more robust examples of humanity).
Dr McBride is right, we haven’t cracked it yet, but then I haven’t cracked either (apart from physically on various patches of my skin, but I’m used to that).
OK numbers fans – my cholesterol is down to 6.8. Still higher than it should be, but nowhere near the alarming levels it was at just after Christmas. Good news for my blood, bad news for whisky and Camembert fans (both of which I consumed in abundance over Christmas). My liver is totally back to normal (even I can’t deny that not having a drink since January 5th might have contributed to this in some small way).
According to Dr McBride lots of psoriasis patients drink a lot, and even those that don’t can get a fatty liver common amongst boozers,which is something that we have been monitoring. That said, I don’t have to have any bloods taken next time – the reason for my regular donation of plasma recently is to see if the ciclosporin is up to no good in my system. It raises cholesterol amongst other things: another reason to wean me off it. Further impetus comes from the fact that when dosage drops between a certain point (a different place, dependent upon the reactions of each individual patient) it stops working altogether and is fairly pointless. Down to 50g morning and night then, with a view to getting rid of it completely. As a result my arms are a bit sore and red, particularly the underside just around the elbow.
As all these psoriasis drugs seem to have some kind of side effect I ask Dr McBride what I might expect if I react badly to adalimumab.She rather coyly says that she’s not telling me, which is quite alarming: what could she be alluding to? Might I become Dr Hadoke and Mr Hyde: by day a bumbling, slightly grumpy man who can never find his Oyster card, and by night a rather bumbling, grumpy man who can never find his Oyster card and so kills people? Watch this space. What she does tell me is that it can leave on open to infection, hence the rapid reduction of the immuno suppressing ciclosporin. The combination of the two could leave me as open to infection as (insert name of crap football team here)’s goal is to, um, letting in a goal.
Science-wise, I had some stuff written down about adalimumab and TNFs. I wasn’t sure I had quite grasped what the latter was, even though I knew they were something that I had unusually high levels of, so I have asked Doctor McBride to tell me in her own words. “It’s TNF Alpha, which is Tumecrosis Factor Alpha which is raised in psoriasis. It’s an inflammatory mediator which is raised in psoriasis but also raised in depression. Sometimes when we treat people who are depressed with anti TNFs then their mood lifts but it’s not across the board and occasionally when people take anti TNFs they can get depression. “ So there you go.
So, to the layman, in treating the skin adalimumab also has an impact on reducing levels of anxiety.This helps with suppressing the desire to use alcohol as an escape – not just alcohol actually. We use anything: psoriasis suffers tend to eat a lot, smoke, drink and not talk about our emotions. We’re a dermatological jigsaw with many fractured pieces that need putting back together rather carefully.
February appointment – addendum. Good and bad news by my latest visit – cholesterol back up (7.9 – I have not been looking after myself; not Camembert but Fish and Chips and Curry) but I am now off the ciclosporin. My arms are still not looking too clever and my face and scalp need constant attention, but the rest of me is pretty good (relatively speaking). Upon my return to the hospital I will be subjected to my 16 week assessment with both Dr McBride and adalimumab wrangler Nurse Annie to see how well I am responding. Hopefully it’ll be good (though I won’t be allowed Fish and Chips to celebrate – maybe a pint of salad or a shot of cous cous .. Oh, I love being old and ill).
This is a summary of various visits which might be a bit jumbled as I didn’t keep especially good notes and have been in nearly every week.…
Before going in to see Dr McBride there are various things I have to do. I don’t know what they test my urine for but they didn’t rush me into hospital so it must have been quite splendid wee. They also check my weight (a tad over what I’d like to be) and blood pressure (no idea why, but I don’t like having it taken; it feels like my veins are about to burst).
I am a few weeks into my biologics treatment, and being monitored as a result of my breakdown, so Dr McBride is seeing me every week(during one check-up we have a very surreal conversation about one’s “inner chimp” … you had to be there*). Dr Mizara was away for a bit but I had a session with her when she came back which was extremely useful. I am being weaned off ciclosporin too (75g morning and night). Early in the month my cholesterol has gone up to an all-time high of 8.9 which really needs addressing. I can’t go on statins until I’m off ciclosporin as they seem to have an Israel/Palestine thing going on. I have to start the ball rolling with my GP though (place your bets now as to whether I have got around to it before the next blog). Also, my liver’s up a bit. Wonder why that could be? (Christmas Time, Mistletoe and Wine … and then some more wine … and perhaps a little more)
The reason that Doctor McBride is seeing me weekly at the moment is, I think, to ensure that I don’t start dribbling or talking to a hat(see previous blog). As ever she takes time to talk and give me insight and understanding. She and her team were fabulous over Christmas when I was in real need of help, and the aftercare is very effective. Anyway, I’ll concentrate on the purely medicinal side for now, as I think regular readers will be pretty clued up as to the gold standard TLC I get from all of the team at the Royal Free Dermatology unit. Their absence from the New Year’s Honours list was notable.
On a later visit my PAASI score is good, which is something.Another positive is that I seem to be responding well to the adalimumab. I only had my blood done before my appointment so we didn’t have the full results but the general analysis is OK. I will have to wait for the specifics. Skin-wise I’m pretty clear and people have commented on the brightness of my face (without prompting). I have had a slight outbreak on my arms around my elbows so that needs monitoring, but as far as my pink body armour goes, this is something of a giant leap. My scalp, as ever, remains incorrectly proportioned as far as the hair:scurf ratio goes. There’s a little patch of dry skin on my back but otherwise my trunk is free not only from plaques but also that reddish discolouration that is usually here reminding me that even when I’m in remission a potential outbreak is never far away.
Dr McBride says that I look healthy – if I was a dog I’d have a nice wet nose. Ah. Yes, regular readers, you’re right. She has said that once before. Suddenly I am reminded that though the team here remember our names and are conversant with our history and individual problems, they do not hang on every word spoken during our sessions (we on the other hand, do). I am one patient of many on just one day. They see patients on other days. I generally go once a month, so in addition to my Tuesday there are another three per month where a constant stream of disparate patients occupies my seat. So of course Dr McBride doesn’t know that she’s used that metaphor on me before. I know though, and ruefully note how effective the caring side of this process is because it’s just one tiny, isolated moment where I realise that I am not as special as I like to think. I suspect most patients with most illnesses feel that all the time as they negotiate the medical treadmill. Brilliantly, of course, as I mull this over later Dr McBride e-mails me out of the blue. The full analysis of my bloods is through, and she thought I’d probably like to know now, rather than wait until next time, that they have shown significant improvement since my first visit this year. She didn’t need to do that, but obviously knew I was a bit concerned so took a moment of her own time to reassure me across cyberspace.
I feel all special again, which puts a bit of a spring in my step.My nose feels a little wet too.
*I will blog about this at another time – Dr McBride has been reading a book called The Chimp Paradoxwhich is useful for psoriasis sufferers. It helps us gain some understanding about the mental processes we go through that prevent us from having a stress free life.