Tag Archives: Exorex

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).

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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”.

Living With Psoriasis

 

Living With Psoriasis

Some time ago I was invited to a round table discussion about psoriasis.

It was convened by Forest Laboratories: they produce psoriasis cream Exorex. The chairman was Martin Godfrey: former GP, now journalist. There were other GPs there, and representatives of Forest Laboratories and the PR firm organising the whole thing, but most of the talking was done by patients who for various reasons have some sort of profile in the world of skin (the dermatological A List!). So as well as me,  they’d gathered Kate Shapland, beauty writer for The Telegraph and psoriasis sufferer for 5 years, Helen Hanrahan (aka blogger The Flaky Fashionista, 15 years stricken) and Victoria Fine from Psoriasense, who is lumbered with not only the skin problems that this dreadful blight causes, but the accompanying arthritis too.

We told the assorted medicos of our experiences and were then asked if we would be interested in sharing our hilarious tales of industrial strength moisturiser, crusty elbows and low self-esteem with the wider public. And the results are up and downloadable as an E-book called living With Psoriasis. It is fascinating to read other people’s experiences, and I think empathy and knowing you are not alone really do give comfort when one feels marooned on a desert island (albeit one where the beach is made of dusty dead skin cells rather than sand). Helen takes a typically gusty, no-nonsense approach and looks at the practicalities of dressing well when cascading detritus does its best to distract from the impressiveness of your wardrobe, whilst Simon Jury’s wife talks about what it is like living with someone who has the condition – something we sufferers could do well to remind ourselves about. There are other chapters too, covering various aspects of the condition through first hand experience.

I recommend this – it comes from a good place and has been put together with great care. Maybe pass it on to someone too shy to talk about their condition but who might like to hear from others:

http://www.exorex.co.uk/ebook/

MISCELLANEOUS UPDATES OF JOY

Miscellaneous Updates Of Joy

13th August 2013

 

A few bits and bobs.

 

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.

 

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New Publicity Photo Care Of The Exorex Shoot!

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.

stone
A Stone, Yesterday.
I have one too many of these.

 

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):

http://www.commissioning.gp/news/article/1080/psychological-impact-of-psoriasis-on-patient-should-be-assessed/17/

And here’s the interview I did with the NHS Choices website that seems to be getting a bit of traffic:

http://www.nhs.uk/Livewell/skin/Pages/Psoriasis-case-study-toby.aspx

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Unused From The Exorex Shoot.
This is what I think of my current health status.

PSORIASIS BLOG : Bits And Bobs (Itches And Scratches?)

BITS AND BOBS (ITCHES AND SCRATCHES)

24th June 2013

Twice this week I have struggled to find a building in a posh part of London: despite my having the address both times I was scuppered beacause the edifices in question had no signage indicating that they were where they were supposed to be. The second was a recording studio where I was doing a voice over, but the first was a big old hotel/conference centre beset with lighting that was only permitted at ankle height and set to muted Electricity-Failing-Due-To-Zombie-Apocalypse low levels. The darkened elevators were augmented by TV screens with images of encroaching clouds – as if to say that the best way to comfort people about being indoors is to artificially create the ambiance that one might get rained on at any moment. All very modern, and very avant-garde, and all the result of some overpaid zeitgeist weaver with loads of outside-of-the-box ideas to brainstorm but very little involvement in the real world inhabited by people who are allergic to nonsense.

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Victoria Fine – She Talks Psoriasence

Anyway, I was there for a psoriasis roundtable convened by Forest Laboratories: they produce psoriasis cream Exorex. It’s a product I neither endorse nor disdain by the way, I mention it simply as a statement of fact. In my experience different creams work differently for different people. They laid on nifty sandwiches (no crusts, different coloured bread – it really is another universe) and a selection of teas and coffees. We didn’t so much as have to sing for our elevensies as talk about psoriasis for a bit. It was chaired by Martin Godfrey who had been a GP but then became a journalist, and he was very welcoming and full of enthusiasm. There were other GPs there, and representatives of Forest Laboratories and the PR firm organising the whole thing, but most of the talking was done by patients who for various reasons have some sort of profile in the world of skin (put that on your CV Toby!). So as well as me,  they’d gathered Kate Shapland, beauty writer for The Telegraph and psoriasis sufferer for 5 years, Helen Hanrahan (aka blogger The Flaky Fashionista, 15 years stricken) and Victoria Fine from Psoriasence, who is lumbered with not only the skin problems that this dreadful blight causes, but the accompnaying arthritis too.

We told the assorted medicos of our experiences – much of what was said is the sort of stuff I have blogged about (I actually threw some jokes that I’ve written from here into the conversation as if I’d just thought of them – yes, I’m that desperate for approval). The meeting may result in some interesting initiatives – there’s talk of each of us writing a chapter for an e-book for example, and we’re all going to have a session with a professional photographer to get an image to accompany our writings.

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Helen Hanrahan – The Flaky Fashionista

What struck me the most during our discussions was Helen’s very positive attitude to psoriasis. There we were taking about the psychological impact of the condition and the treatments that have failed us and she said that as a sufferer she wouldn’t want to read about that because she knows it all: she lives with the bloody thing. She wants practical tips. Interestingly, Kate said that in terms of make-up and beauty there were very few; it’s an unattractive condition, difficult to cover up, and that’s that. Helen’s fashion blog takes the opposite approach – she writes about what glamorous clothes you can wear with the disease; a brilliant, positive way of writing that flies in the face of the sort of navel gazing often done it articles about living with a skin condition. Well, if she does gaze at her navel it’s only to see what colour garment would show it in the most flattering light.

All this positivity was coming from someone who is treated in Ireland and so not a beneficiary of the NHS. Her treatment costs her personally. And costs a lot. 48euro per Light Treatment I think she said, and the medicines and creams are very expensive. She once just spent a fortune on going alone on a sunny holiday because it cost as much as the creams she was being prescribed and had the same effect with none of the discomfort. When she broke down her expenditure it was eye watering: I couldn’t afford that kind of outlay which means that without the NHS I would be in agony and of no use to society whatsoever (not that I’m much use now, but you get my drift).

Talking to Helen and Victoria afterwards it struck me that the fact that my healthcare is free isn’t the only reason I should count myself lucky. In this image-obsessed and somewhat misogynist society, I think women with psoriasis are judged more harshly than men. Also, both of the ladies endured far more pain than I, I think. I have been very sore when an outbreak has occurred after a streptococcal throat infection, but my every day, vanilla psoriasis is, although unsightly and flaky, not generally especially painful. Helen has had periods of total deafness because the swinish thing can build up in her ears, whilst Victoria was once wheelchair bound with “huge cracks across my hand like someone had slashed it with a knife”.

Victoria is a very impressive young woman who has turned her plight into something positive – she is clearly very single-minded and able, and has built up her Psoriassence profile to the extent that she now has the ear of the drug companies and was recently a consultant on a Channel 4 programme about psoriasis that will be broadcast soon (I turned down the offer to appear in that, for various reasons – not controversial or exciting – I’ll go into another time). She has seized the condition and decided to take control of it to the extent that it has even become part of her livelihood. She had been a model, and psoriasis essentially put paid to that (told you it was harder for women) and yet she is unbowed, determined and very clued up. Impressive.

Mug
I Love This – A Psoriasis Mug From Psoriasence!

The three of us chatted away, united by the condition yet different in our attitudes to it – Victoria says there is barely a moment that she doesn’t think about it. Helen, on the other hand, tries to give it as little time as possible and is much more interested in sticking two fingers up and getting on with life. And both have managed to produce something worthwhile. Obviously I’m not someone who is at home on the catwalk but Helen’s blog is great, and she’s a terrific character. I asked what inspired her to write and she said that she’d looked online and all the writing about psoriasis was utterly miserable. She read that one in ten sufferers contemplate suicide – “it’s no bloody surprise if that’s all they have to read”. Oh, yes, she’s good value.

You’ll notice I have used the word “sufferer” a few times. That old chestnut raised its head again at the meeting. Do we object to being referred to as suffers? “No, we do suffer sometimes” said Helen. And she’s right: we don’t need to be protected from vocabulary. It was good to meet her, and Victoria, and I’d direct you to their sites:

Helen’s fantasticaly fashionable blog is here. She Tweets @FlakyFashnista.

Victoria’s brilliant Psoriasense website (lots of information about the condition – and merchandise too!) can be found here. She Tweets @Psoriasence.

Kate didn’t join us in the (inevitable) pub, but she can be found online writing about psoriasis here.