Tag Archives: Royal Free Hospital

PSORIASIS BLOG – Sensitive Skin

PSORIASIS BLOG – Sensitive Skin

The mental health side effects of psoriasis can be quite profound, but treatment is there if you want it. Talk to your GP about it. The post below is extremely anecdotal and subjective because psoriasis treatment is so bespoke. I share it not because I am drawn to the idea of bearing some of my inner frailties because actually the opposite is true. In fact, it scares me a bit – part of me wants to post this but not Tweet about it because then no-one would come here and read it. But that would be to miss the point rather, wouldn’t it? So here you go, have a butcher’s at this. There is more about these issues at the See Psoriasis: Look Deeper website. There is much useful information there.

I have been discharged!

I have been seeing the derma-psychologist Dr Mizara for over four years. I was introduced to her when I was hospitalised with a painful and widespread outbreak of psoriasis after a throat infection. I was on immunosuppressants at the time so instead of a standard flare up I was knocked for six: psoriasis was Chris Gayle and my emotional and physical make up were the hapless and ill-equipped Zimbabwean World Cup cricket XI. Physically I was in a parlous state but mentally I was smacked straight out of the ground. Prior to that I had been doing so well: the medication had meant I’d been bump and crack and flake free for the first time since I was about 20. No pain, no ointments – my surface was flat and my sheets were clean.

(Alright – I’ll stop the cricket analogy now in case you decide to stick your bat into my crease).

See, actual cricket is more painful than the tortuous analogy I used. But only just.
See, actual cricket is more painful than the tortuous analogy I used. But only just.

I have always been rather dubious of psychoanalysis – not because I judged those who underwent it: whatever helps you, of course. Actually, I am lying. I did judge people. I judge people who share their medical and emotional woes on the internet too. I know! What a hypocrite. I don’t want to be one of those comfortable, middle class people who nods earnestly and bangs on about my councillor helping me through the latest hardships undergone by a relatively healthy white man with a home, a loving family and every episode of Doctor Who on DVD. Pass the bloody tissues.

And you know, I don’t have mental problems. Everybody who knows me would say that I’m a fairly jolly chap – yes, I get grumpy about ridiculous little things but only on stage or in dressing rooms and to hilarious (and sometimes “quite funny – three stars”) effect.

So it was with some trepidation that I went to see Dr Mizara. I’d never been very good in drama classes at that “opening up” stuff. You know, when we have to tap into our emotions and cry about something that happened to us. I’ve cried on stage, sure, found it easy, but crucially, because I was pretending to be someone else. I’m not one for bearing my soul in public (well, unless it is hidden behind the conceit of stand-up comedy – and perhaps we don’t need to get too complicated to work out the implications of that).

The first time I went we just talked – she was assessing me as I was getting acclimatised to the process. I was trying it out though – for it’d been suggested to me that it would help by a consultant whom I respect and I would give anything a go to control this scaly beast. If Dr McBride had told me to daub myself in marmalade and sing the Sailor’s Hornpipe on the roof of St Paul’s Cathedral every third Wednesday of the month I’d have had a crack. I have, in the past, spent a year taking Chinese medicine which is only marginally less ridiculous.

It’s difficult to describe Dr Mizara – considered without being distant, empathic without being touchy-feely, pragmatic without being cold. I guess the thing is, you don’t get to know your psychoanalyst : they’re doing a job, part of which is to know you. I decided early on that there’s no point in lying – a Doctor can’t fix you if you don’t tell them all of the symptoms. So of course when she asks that question “Anything else?” all those little niggles – things that have annoyed you, things that you feel guilty about, things that you don’t understand … come flying out. Total disclosure, even if it seems like it’s something irrelevant (which of course it isn’t).

That process alone has been extremely helpful. It’s a pattern of behaviour common in psoriasis patients – to bottle things up, to feel guilty about being angry about certain things because in the greater scheme they are minor. This is tied into the condition. It’s not life threatening nor is it cancer so we feel a bit burdensome complaining. The psychology of this condition is complex and it manifests itself into all other areas of our lives whether we realise it or not.

I’m my own harshest critic so it was always easy to deliver a litany of Things I’d Done wrong whenever I crossed the threshold of her small office on the first floor of the Royal Free Hospital in Hampstead. And I invariably went out feeling clearer about things : better. On some occasions I simply unburdened myself – on others I had an insight into why I had felt certain things at certain times or why I had reacted to others (and they to me) in certain ways. I cried. I got angry. But largely I tried to work out how to get less upset by this thing, or how to respond better to that one. This may sound daft to you – maybe you don’t spend hours going over conversations you had the night before, trying to spot the moments where you’d given the nice person you were talking to a reason to hate you (they didn’t give any sign they’d hated you, of course, but they still might have done).  Maybe you don’t still get really upset about that stranger who said something cruel and thoughtless about the dry patches of skin on your face in 1996. Maybe you think doing that is a colossal waste of time and energy and a very silly thing to do.  And you’re right: good on you and carry on not doing it. That’s probably why you’ve never been sent to a psychologist and I have.

I had a terrible year in 2013 – you don’t need to know the exact reasons why. There’s a difference between sharing one’s experiences and doing a humiliating dance dressed only in your dirty laundry. Just take it from me, it was terrible. Worse than the ending of “Lost”. I was a burden then, I know: to friends, to family. And I was in a parlous state. I went to see Dr McBride after one horrible day and she called Dr Mizara immediately and I was given a last minute session with her (she kindly flexed her schedule to accommodate me). When you are at your lowest ebb you expect friends to tell you that you are worth something but you don’t really believe it. When a medical professional tells you this and gives you coping strategies and insights it enables you to take bigger and bolder steps when all you feel like doing is curling up into a ball or drinking all the whisky in England (which I’m aware is probably not the best stuff but weepers aren’t inclined to be choosers). I am indebted to some very good friends for getting me through this period: but without the commendable empathy of those practitioners at the Royal Free I think I would have leant on my long-suffering chums to an even greater and more tedious extent than I did (so Peter, Caimh, Shauno, Dig, Susie, Mum and the rest, I think Dr Mizara and the dermatology team should be top of your list of People You Owe A Drink To For Saving You From Even More Nights Of Repetition And Tears With A Lachrymose Doctor Who Fan).

"Please say that I've been a good dermatology out-patient."
“Please say that I’ve been a good dermatology out-patient.”

I have been seeing Dr Mizara less frequently recently. So much in my life has changed. I think when someone works so hard with you there is almost a childlike, puppy dog need to tell them what you have achieved – and in doing so you see how far you have come. “I’ve been going to the gym”, “I haven’t had a drink”, “I’ve written a play!” I’d pant, dropping each metaphorical ball at her feet and waiting to be told I was a good boy. I mean, just as needy but so much better than “Why does nobody love me?”.

Last Thursday’s appointment was a formality – just to see how I was doing. I hadn’t been in for a while. To coin the correct phrase, I have coping strategies in place, for many of those things that used to (and still do) give me grief. I have made progress. Life will still never be easy (it isn’t for anybody), but so long as I can continue to not fixate on the past, to look at things from other people’s perspective and realise that not everything they do is about me, to take less destructive paths, and essentially just chill the fuck out (OK, that last one is mine, but it’s pretty much the gist of it) then maybe I can make this journey tough life – the only one we get folks – a bit less of a perilous ride. It would be ridiculous to go to my grave having spent far more of my time worrying about the bad things that might happen (another psoriasis patient meme) than enjoying the good ones that do.

When she told me that I didn’t need to come back I was a little scared but the biggest emotion I felt was one of massive gratitude. I know it’s her job but what a profession to choose. It’s the equivalent of seeking out that maudlin git in the corner of the pub who keeps whining about the bad things that keep happening to them when it’s clear to you that they just need to stop doing what they are currently doing and then maybe they’d be alright. But I needed help that I never would have asked for and I got it. And when she said goodbye I felt tears leaping from my eyes, and I wasn’t even on stage. Nor was I being someone else.

I was being Toby and, crucially, I actually didn’t mind.

 

 

There are patient testimonies about seeing Dr Mizara for a number of skin conditions here.

Dr Mizara talks to the Telegraph about the relationship between the mind and the skin here.

 

Psoriasis Blog – Treatment Update 12

Treatment Update 12

General Notes Dec 2013 – Feb 2014

You never write, you never call.

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).

2014-01-14 21.40.44 HDR
Bandages and hat to stop Sebco messing up the sheets. Who wouldn’t want to go to bed with that? He smells of coal tar too, you say? Sign up the whole of womankind for that heady combination…

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”.

PSORIASIS BLOG – Defending The NHS

Warning: whilst this blog is never especially funny, this entry is especially not especially funny. It does have a slight dig at someone from the telly though, in an attempt to prove how hip and relevant I am.

The NHS is getting a lot of gyp at the moment, from the usual suspects. I am sure it is not perfect and I have had bad experiences at its hands, but the critics are hardly agenda free and so I feel compelled to redress the balance in my own humble corner of the internet.

 

Wayne Deakin - excellent Aussie comic and fellow dermatological disaster area
Wayne Deakin – excellent Aussie comic and fellow dermatological disaster area

Having met psoriasis sufferers from  other countries I’ve benefitted from several reminders of just how damned lucky I am to live in this fair isle. Helen – The Flaky Fashionista – is from Ireland as has hand to fork out for every cream and every UV session. The latter were over 40 quid a time – I had to have it three days a week for about three months. I have to tell a lot of jokes to earn that kind of money. Talking of jokes, my fellow comedian Wayne Deakin and I bonded over our shared assignations with this red mistress of the skin – I worked with him this weekend in Liverpool and we compared patches. In Australia he spends about $240 (about £120) a time on tubes of cream to treat an outbreak. You’ve seen the coverage on my body. In his position I’d need to get a bigger boat on which to tell and awful lot of jokes to a group of lottery winners with money to burn.

The most moving encounter I had in this regard was at a Doctor Who convention in Chicago last year when a gentleman left my show – My Stepson Stole My Sonic Screwdriver – because he hadn’t know about its psoriatic content and it messed with his head a bit. He came to apologise (which wasn’t necessary) and told me his story. His partner clearly loved him but there was a lot of pain there for both of them. Whilst she and my wife shared their experiences I listened as he explained how the condition had led to him losing work and so his medical insurance no longer covered him and so he couldn’t treat his severe condition. The doctors under whose care we was under stopped looking after him when he no longer had the requisite resources. And I thought Leah from The Apprentice was as cold a doctor as you could find. As a result this poor fellow was now scarred physically and emotionally and was not in a position to secure much work. A ridiculous, callous self perpetuating situation which left him feeling helpless and in a huge amount of pain.

 

 

The NHS, like the BBC, is generally envied trhoughout the world: those that seek to dismantle either have an alarming agenda.
The NHS, like the BBC, is generally envied trhoughout the world: those that seek to dismantle either have an alarming agenda.

And me, here in the UK? I pay prescription charges – a fraction of the money paid by anyone above for the huge variety of treatments that I have outlined in this blog. I am a self-emplyed itinerant player, the kind of figure I would need to match what my fellow flakies have to fork out is beyond my reach. The extensive and dogged campaign my condition has waged on my skin for the past 25 years would have required a serious finanacial investment, just so I could not endure excruciating pain and emotional shame every day. I’m surely a better citizen when I’m not like that? Had I had to practically bankrupt myself to maintain my treatment I probably would have given up – not because the condition is bearable, but because psoriasis sufferers allow themselves to go through much more than they actually should because what we have isn’t life threatening. For many years I endured an unecessary level of physical and mental discomfort because I thought that was my lot in life – it was only when the specialists at the Royal Free told me that I absolutely didn’t have to live like that that I was made aware that there was much that could be done and treatments which could have an effect I had hitherto only dreamed of (and that I didn’t have to pay for them).

Had that not happened, and had I neglected my treatment for financial comfort, I almost certainly wouldn’t have been able to work, so would have been a drain in the state rather than a taxpaying contributor to it. And to be perfectly honest, the level of agony that would have resulted from a cessation of my treatment, and the anguish that would have accompanied that … I’d have probably topped myself. And I don’t mean that metaphorically.

And that wouldn’t have made anyone laugh.  I know I don’t contribute much to society, but I like to think that my continued presence on this Earth is worth something to some people.

And if that is the case, I have the NHS to thank.

PSORIASIS BLOG – Treatment Update 11

Treatment Update 11

General Notes March – July 2013

(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”.

cauliflower dog
I worry these treatment blogs get too technical and self-indulgent, so I’m trying to lighten the mood with a picture of a cauliflower dog.

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.

 

The Skin On My Arms 6th April 2013
The Skin On My Arms 6th April 2013

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).

PSORIASIS BLOG – Treatment Update 10

Treatment Update 10

22/1/2013 – 5/2/2013 (2 visits)

camembert
“It’s all my fault,” said the evil but deliciously oozing cheese and cholesterol level alarmist.

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.

salad
“What’s that?”
“The rest of your life mate.”
“Looks a bit dull – can’t I add anything nice to it?”
“Nope”
“Oh.”

 

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).

PSORIASIS BLOG – Treatment Update 9

Treatment Update Nine

Mid-January 2013 (various dates)

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.…

 

assets_Images_projects_Royal Free Hospital_RoyalFreeHospital-2.jpg.40f6e983dbf7b1917df0804023e1653c
The Royal Free Hospital ; not so named because Prince Charles and the Queen aren’t allowed in.

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.

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I’m the human equivalent of this apparently. Twice.

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 Paradox which 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.