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This is slightly out of date as I took a while to post it whilst I checked the accuracy of the scientific content (and then edited most of it out).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