Tag Archives: Acitretin

PSORIASIS BLOG – Treatment Update Five

Treatment Update Five

9th October 2012

This is slightly out of date as I took a while to post it whilst I checked the accuracy of the scientific content (and then edited most of it out).

I’m not especially well at the moment. We’ll come to why a little later.

 

The human equivalent of psoriasis – unpleasant and irritating for no reason that benefits anybody.

A double dose at the Royal Free today. I was to be seen by Dermatology and Immunology in their quest to map every pathway of my body in order to best navigate my road to recovery. Immunology first – I had to wait almost as long as it takes Kelvin McKenzie to issue an apology, which only goes to show I fortunate I am that the dermatology department usually see me extremely quickly. The immunologist was pretty certain I will be discharged when I revisit in six months’ time after my GP tests the effectiveness of my Numococus and Tetanus levels (basically more needles, a dead arm, and thinking I’ve been terribly brave for enduring something most adults wouldn’t even mention, let alone expect a hot water bottle and fruit cake for experiencing). I am also on the waiting list to get a definitive answer regarding suspected penicillin allergy: we only have anecdotal evidence and supposition about this, but we can’t be too careful (see here for more). This may take a while, and in the meantime we have had the go ahead for Dr McBride to prescribe me preventative prophylactic antibiotics – penicillin free, and called cefalexin, which will hopefully stop me getting a sore throat and causing my immune system to behave as if it’s Michael Gove and my body is a working class child’s future.

Warning! The two paragraphs below in italics have lots of science and very little wordplay, so might be worth ignoring if you’re only here for the “hilarity” of my jokes about shedding skin and being unable to move without suffering from abject pain. They are, as Jennifer Aniston would say, the science bit:

It’s like this – I gave another armful of blood after my last visit to see how my immune system is doing. It turns out that I have low Numococus and Tatanus readings (these are two of the levels they check to see how robust ones’ immune system is). Now, lowness doesn’t necessarily mean it isn’t very good:  it may mean that I haven’t been exposed to anything related lately and so I am going to have to get my GP to give me injections to see if the levels rise and my immune system fights them correctly. The low levels I have at the moment should boost by three times if my immune system is working correctly: if the levels stay low, that’s where I have a defect.

The mannose binding lectin deficiency is definitely there. MBLs are part of the innate immune system. A low MBL reading can be found in one in ten people prone to streptococcal throat infections. And that’s as far as immunology is with psoriasis, though the specialists at the Royal Free have seen a link between psoriasis and low MBLs that they are examining right now. We patients are a work in progress, and the disease is far from being fully understood, and so this is a potentially fascinating avenue to explore.

 

“Oy, dangly thing, your days might be numbered.”

And so to Dr McBride, who had gone to the trouble of phoning me when I was stuck in immunology at the time that I should have been with her; and when I did finally make it, saw me pretty much straight away and indulged my fretfulness about various aspects of the disease. One of the suggestions from the immunologist was that removing my tonsils might be a good idea. Dr McBride tells me that my chances of not getting a streptococcal infection (which would in turn cause a flare up of my psoriasis) would be reduced by 50%: do I want to go through such a painful and stressful operation to play such odds? Tonsil removal is something kids can cope with pretty well, but it can have a drastic and debilitating effect on adults (much like Barney The Dinosaur then). We’re going to persevere with the antibiotics and hope they hold any infections at bay for the next six months while the acitretin gets to work. I have been upped to 25mg of that and my ciclosporin intake reduced by 25mg per day. I have noticed a stubborn dryness to my lips since going on acitretin, and indeed that was one of the mooted side effects. So I’m never more than 5 feet away from a tub of mint infused Vaseline at the moment. I moisturise my lips too.

Other than that, I’m responding pretty well to the acitretin. My Triglycerides are at 1.6 which is good; they would rise if I was reacting badly to the medicine, and my kidney function is good, as are my Vitamin D levels. I take a booster dose of the latter every two weeks because Dr McBride thinks I spend too much time indoors at my typewriter and therefore do not enjoy the benefits of the sunlight. I haven’t told her that I sleep in a coffin and have an aversion to garlic so hopefully my dark secret remains my own. My cholesterol though, has shot up again, to 6.4. We’ve talked about getting statins from my GP, now it’s time for action. They help with psoriasis, and obviously the tendency for my cholesterol to err of the high side is untenable long term. So that’s another shelf of the medicine cabinet to be filled. Cabinet? Who am I trying to kid? Wing, more like. I am also being referred to an ENT unit to have a gander at my tonsils to see what they think the risks and efficacy of such a manoeuvre would be. (Post Script : After talking this over with my wife, I have paused on this and will speak to Dr McBride again – I brought my cholesterol level down with a good diet and exercise once before, so should I not aspire to do it the natural way once again rather than add another dose to the increasingly long list of Pills I Have To Pop?).

Then we got talking about how I was feeling. This took an interesting turn and resulted in a difficult conversation that nonetheless concluded with some helpful insight. Which I’ll share with you next time …

 

SHEDDING LIGHT AND SKIN – I Must Not Mis-Spell My Medicine

I Must Not Mis-Spell My Medicine (includes information on dermapsychology which may be useful for psoriasis sufferers).

Guess what I’ve just been spending the past hour doing? Going thorugh my blog archive and correcting the spelling of the two oral treatments I am taking. What joy. I had assumed they were spelt “cyclosprine” and “acetretine” and only an idle moment today spent reading the packaging of the medicine I have been swallowing by the bucktleoad for the past God-knows-how-long revealed that my orthographical assumptions have been malfunctioning with the same waywardness as Kelvin McKenzie’s moral compass.

So, for the record, I am on ciclosporin (pronounced sy-clo-spor-in), do you hear me? And acitretin. Ciclosporin, ciclosporin, ciclosporin. Acitretin, acitretin, acitretin.  There, hopefully that will redress the cyberspace balance of my consistent cack-headedness (though to be fair, the internet rather presumptuously asks you if you mean “cyclosporine” when you type “ciclosporin” into Google, so I’m not alone – all the web in the whole wide world makes the same mistake that I did). That said, even I don’t know if this blog is called “Shedding Light AND Skin” or “Shedding Light ON Skin”. I am not particularly enamoured of either to be honest, and might just call it plain old Psoriasis Blog from now on (I’m probably typing this for my benefit only as I suspect the rest of you simply couldn’t give a toss what it’s called).

If you want to know what ciclosporin is by the way, have a look here. Like many a psoriasis treatment it was initially used for something else (in this case, kidney transplants) and by chance it proved to have a positive side effect on this beastly malady. Hopefully one day they’ll stumble upon the fact that people who consume industrial levels of champagne and Lindt chocolate show an upturn in their battle against the psoriatic ague and so Verve Cliquot and Dark Intense become prescribed on the NHS. Why not? Stranger things have happened.

I went to see Doctor Mazara today, who was keen for me to alert my … ooh, dozens of readers (unless that’s just you clicking on to the site twelve times Mum, in which case, stop it!) to the work she does at the Royal Free. She is, as I have mentioned, a dermapsychologist, who is available on the NHS for anyone who thinks that dealing with the psychological ramifications of their psoriasis might be a useful way of combatting it. She has certainly been helping me, and this initiative to encourage people to treat the disease as not just an afflictiom of the skin, but rather something that is inextricably linked with one’s emotional state, is certainly worth a shot.

There is more information, some contact details and FAQs here (PDF), and some basic info here. In my experience, GPs are happy for psoriasis patients to come in with suggestions because it is such a complex and specialised disease. If you don’t ask you don’t get, so why not give it a bash? You have nothing to lose but your pains.

SHEDDING LIGHT ON SKIN – Treatment Update Four

Treatment Update Four

Various dates, Sept 2012

I stayed in pretty rude health throughout the Edinburgh Fringe, avoiding alcohol, eating well, and going to the gym nearly every day. I had a scare of raised glands and a sore throat so caned the antibiotics which I had been prescribed for just such an eventuality. So if I had indeed been headed for a throat infection the pills steered me to safety, as I didn’t succumb.

My hospital the Royal Free – which is not something those pesky french newspapers can claim to be this week, eh readers?

Since my return I have seen an immunologist, a heptologist, my consultant and my derma-psychologist. If there was a Panini sticker album of medical professionals I’d be doing very well indeed. I was being seen by the immunologist to see if there was any reason I couldn’t change my medication. I have been having success with Ciclosporin but it is only a short term solution (use it for more than a couple of years and your kidneys start getting into trouble). Dr McBride wanted to see what was going on with my immune system so that she could plan the next step in my treatment. To recap – psoriasis isn’t a skin condition as such, more a problem with the immune system. In taking immune-suppressing medication one can open oneself up to streptococcal throat infections, which in turn set off an outbreak of psoriasis, the very thing I’m taking immune-suppressants to combat: talk about coming full circle.

I was asked a series of questions by the immunologist about allergies and the like. One anomaly is that I was not a sickly child (though I was prone to hayfever). Traditionally an under functioning immune system would produce a less than robust infant, but I was well ‘ard. I am seeing the immunologist again in a few weeks, and he is also putting me in for a test to see if I am allergic to penicillin or not. This is an interesting one – I was prescribed penicillin for throat infections in the past, and this was followed by psoriasis outbreaks. Was it penicillin rash onto which the psoriasis attached itself? In which case, penicillin = bad. Or, was it that we didn’t catch the throat infection in time and so the psoriasis was related to that and nothing to do with the penicillin? In which case, penicillin = good! This will be useful information because I am going to be put on preventative antibiotics for six months to allow me to see if the Acitretin is working without the complication of a psoriasis outbreak caused by a sore throat. The penicillin test can take an age to come through – in the meantime, I have to be content with giving another gravy boat of blood to the ever patient phlebotomists who try not to show too much amusement at my fidgety terror of having a needle stuck in my arm.

My sessions with Dr Mazara (the derma-psychologist) are coming to a close – there are only four or five left, so we need to look at the things that had been bothering me (my shortcomings if you like) and see if our sessions have helped me to overcome them or at least deal with them in the long term. I’m not sure it’s possibly to quantify the work that she does, but it is very useful in getting both support and a perspective on various issues.

And so to Dr McBride after a month in Edinburgh. The hospital must have loved August – I bet they thought they’d got rid of me. But no – here I am again, taking up valuable time and sucking up precious resources. It must be tedious – I’m such a drain on NHS patience and morale I’m think of changing my name to Jeremy Hunt. Anyway, Dr McBride was kind enough not to show her disappointment and was actually pleased: PAASI score was 2.1 and my DLQI was 2. I’m aware that to most of you I may as well have just typed “I have 99 flibbles and a soupcon of twack” so I shall explain. The PAASI score is the Psoriasis Activity And Severity Index, which is an objective assessment of the coverage of psoriasis my body is being subjected to. The lower the score the better. In July I was at 8.7, June 12.5 and prior to that I had been a whacking great 17.2. I’ve never been this good. So she is optimistic about my potential, which is nice. Ah well, whatever happens, we’ll always have PAASI (that would have been a better pun had it been spelt, as I had assumed before discovering what the acronym stood for, PARSI, as that would have been an anagram of Paris. Never mind, I still like it).  The DLQI is the Dermatology Life Quality Index which is, I think, based on a questionnaire you fill in every time about how much the condition has effected aspects of your life (work, clothing, sport etc). I have generally been around the 2 mark, but it alters when I get a particular flare up. My cholesterol and liver also looking good. The latter I knew thanks to the heptologist I saw a week earlier, who basically said that my liver was all better because I hadn’t been drinking the ridiculous volume of alcohol I have had a tendency to drown my sorrows or toast my successes with, with rather too much alacrity.

Some Acitretin, yesterday.

Acitretin cannot be taken by people with liver disease so it’s important it is in a decent state if I am to take this medicine. I have a slightly fatty liver – this essentially warns me that if I batter it with booze to quite the extent I have done then in ten years’ time I might be in serious trouble. So I need to timetable my drinking and make sure I treat my liver with the care it deserves. We are going slowly with my treatment – the ciclosporin will be reduced to 125mg morning and night (from 150mg) with 10mg of acitretin to get me going with that. This has been preferred to the biologics: whilst ciclosporin is a general immune-suppressant (originally for use with kidney and liver transplants), the biologics is more targeted. Nonetheless, Dr McBride would rather try with Acitretin before taking that step, even if it might make me go bald. If that happens, I can blame something nature was already doing on my medication. Excellent! Perhaps its other side effects could be being a bit messy, an unimaginative lover and rather dull at parties. It’s not me, it’s the drugs, honest. Actual potential side effects, as it happens, are, according to the leaflet, sore eyes, muscle aches(it says here to avoid those by not doing any “rigorous exercise” – well, if you insist …) and dry skin. Dry skin, a side effect of a psoriasis treatment? That’s like taking something for hayfever that makes you sneeze. Ah, well, I’m game – and Dr McBride says the manifestation of the listed potential side effects is relatively unlikely. As of yet nothing too drastic (bar slightly dry lips) seems to have happened, though it does say avoid alcohol and I celebrated the completion of a hard but enjoyable weekend at the Comedy Store with a bottle of Chablis and some lovely scotch whisky given to me by my pal Jason Cook, so it’ll be interesting to see what my next lot of bloods say. It looks like the acitretin will be used on me for about six months, to really nobble the blighter, and then I will come off it. As Dr McBride says, any treatment can at best control the condition – as yet there is no out-and-out cure…

So I’m back in a month with both Dr McBride and the immunologist, but in the meantime, the Psoriasis Association has been in touch. I’ll let you know all about that next time, but October has some exciting things on the timetable…