Friday, December 31, 2010
Ciclosporin has improved my eczema quite considerably
Please allow me to introduce myself. My name is Huw, I’m 42 years old, and I work in primary healthcare. I’ve suffered from eczema for as long as I can remember, and spent several months in hospital, several times, because of it when I was younger.
Around eighteen months ago, I went to my GP to ask if my treatment could be reviewed. At that time I was using Betnovate cream for “affected areas” and aqueous cream as a moisturiser. I didn’t (and still don’t) use any specialised scalp preparations as I tend to keep my hair very short so can use my normal creams on my head. I was becoming slightly concerned about the side effects of long-term potent steroid use, and asked if there were any alternatives.
My GP, who is very pleasant, approachable and, I thought, knew what he was talking about told me that there was “nothing new under the sun” in the field of eczema treatment, and suggested I try downgrading to Betnovate RD (which is diluted to a quarter of the potency of straight Betnovate) if I was concerned about topical steroid use, to see how it went. So I did. My treatment now comprised Betnovate RD and aqueous cream, together with antihistamines that I’d buy as and when I needed them.
A few months later, after a prolonged period of poorly controlled eczema, I again went back to my GP. This time, I saw a different GP who I hadn’t seen before (and will never consult again). I asked her for a referral to a dermatologist, and when she asked me why I wanted one I told her that I hadn’t seen a dermatologist for over 20 years, and as my condition was a specialist one I’d like to have my treatment reviewed by a specialist. Her response was to tell me that my eczema wasn’t severe enough to be referred, and to continue with my treatment of Betnovate RD and aqueous cream.
I’ve never been one for an argument, so accepted her opinion and went away, even if I wasn’t happy with the outcome. Over the next week or so I talked to some medico friends and did some research, then went back to see GP number three, who had retired from the practise but still came back to help out when they were short. I asked him for a referral, explained my reasons (same as before) and he immediately agreed and arranged for me to use Choose and Book. I chose, and booked.
The next morning, while I was still asleep (I work shifts and my sleep patterns are somewhat erratic) I had a phone call from GP number 2, (the “your eczema isn’t bad enough for a referral” one) querying my reasons for coming back and asking for a referral again. In my sleep-fuddled state I simply agreed when she asked if it had got worse since she saw me. Afterwards, I wished I’d told her the real reason: that I wasn’t happy with her opinion or the way she’d spoken to me, and had gone back to see someone else and if necessary insist on a referral.
Cut to a few weeks later, and I’m at my first appointment with the dermatologist. “Typical,” I think to myself as I sit in the waiting room “I finally get to see a specialist and my skin’s better than it’s been for years. I bet they laugh me out of the clinic.” In anticipation of this, I had compiled a file of photographs of my eczema when it was bad, together with a document entitled “Why do I want to see a Dermatologist?” which listed about 15 reasons, collected over the preceding few weeks.
My name was called, and I walked in to the consulting room, sporting my near-perfect skin and dreading the derision with which I was sure to be met.
“Wow,” said the dermatologist, “that’s really extensive eczema.” I collapsed into a relieved heap on the chair next to her desk.
After a comprehensive consultation, the dermatologist suggested I try a treatment called Ciclosporin. She explained that it was a immune system suppressant, and I seem to remember her telling me that it had only been used for eczema treatment for a few years (after the theory/discovery that eczema is caused by an overactive immune system). She told me that it could have adverse side effects (high blood pressure and kidney problems), but that I would be closely monitored before and after I started using it, if I chose to try it, to make sure any ill effects were picked up quickly. I was given a sheaf of information about the treatment so that I could make an informed choice, together with another appointment at the clinic, a couple of weeks later, to see the nurse specialist.
I read, I researched, I decided. I saw the nurse specialist, was measured, weighed, sphygmomanometised and had bloods taken. I returned for my third appointment where I had a final check over by the dermatologist to confirm my suitability, then started on the treatment.
My initial dose was to be 250mg per day, split into 100mg in the morning and 150mg in the evening. I carefully read the patient information booklet that came with the Ciclosporin (which was lucky, because I had been taking St John’s Wort for some months beforehand and discovered that I had to stop it when I started the new treatment). Another common drug that can’t be taken with Ciclosporin is Ibuprofen, and I’ve also been advised to avoid sushi (not a big deal for me) and blue cheese (something of a bigger deal) due to the increased risk of listeria caused by suppressing my immune system I haven’t tested the issue, as much as I miss my Stilton.
Another thing I was warned about was the increased risk of infections, especially chest infections, for the same reason. I was told to see my GP (guess which GP I wouldn’t be consulting?) as soon as I started to feel ill.
The patient information booklet told me that most people who take Ciclosporin benefit from it, and somewhere in the literature a timescale of two to three weeks was mentioned. The booklet warns to immediately see your doctor if you develop a sore throat, any infections or begin to feel generally unwell, then lists a string of possible side effects.
Over the first few weeks after I started the treatment, my skin steadily improved until I was 95% clear of eczema, with no topical steroid use. The biggest differences I saw were on my face, scalp and forearms: my face no longer had its untreatable dry patches (they had always seemed to instantly absorb cream and return to flakiness in about 30 seconds flat), likewise my scalp (I suddenly found myself able to wear dark t-shirts for the first time) and my forearms stopped developing spontaneous and unrelievable maddeningly itchy patches that would end up as purpuric bruises after I scratched them.
My blood pressure was up, however, at about 145/98, and I had occasional bouts of suddenly feeling really ill: nauseous, abdominal cramps, just ill. I have had only four or five of these ‘attacks’ over the last seven months, and they have passed after at most an hour or two. I also had a couple of skin infections, and became quite closely acquainted with Flucloxacillin, which was prescribed by walk-in centre GPs (on both occasions at about 3am – one of the benefits of working shifts is not having to queue!). On two or three mornings I woke up with a hangover-like headache, without the more usual cause!
I discussed these issues with the nurse specialist on my first review consultation at the dermatology clinic. After referring to a dermatologist, my dose of Ciclosporin was reduced from 250mg/day to 200mg/day, and I was given Dermol, which is a moisturiser with antimicrobial properties to reduce skin infections. I was also given Dermol lotion to use as a soap/shower gel substitute. I was also referred to my GP to consider treatment for my raised blood pressure, but the GP (one of the good ones) didn’t seem particularly concerned at the levels I had reached, describing them as “not in the treatable range”, and when it was checked at the surgery it was a more respectable 120/80.
I continued on the 200mg/day until my next appointment (probably four months into the treatment). My bouts of feeling ill had stopped, but my eczema had deteriorated. It was still much better than it was before I started on the Ciclosporin (face and arms still clear), but my legs and torso were becoming sore and red again. I had had a couple more skin infections, and one episode of what I’m pretty sure was cellulitis on my ankle, which resulted in an early finish to a night shift and a visit to A&E, where the doctor agreed with my provisional diagnosis and prescribed Fucibet cream and, you guessed it, Flucloxacillin.
I had still not suffered any chest infections (touch wood), and my blood results were still coming back OK – no nasties appearing and no indication that my kidneys or liver were suffering any ill effects from the medication, so my dose was increased to 300mg/day (150mg BD).
This brings me up to now. I haven’t had any headaches for months, my skin’s still much better than it was before I started Ciclosporin, but it’s not perfect. I still get the occasional attack of nausea and abdominal cramps (most notably on Christmas day, making me miss my dinner!) but they still pass after an hour or two curled up in bed. I still haven’t had any chest infections, but seem to have a constant niggling skin infection, usually on my lower legs. I think the Dermol is keeping that under control, if not getting rid of it completely. I’m using about 10% as much topical steroid as I did pre-Ciclosporin. I’m not yet at the maximum dose of Ciclosporin for my weight, and my next appointment at the clinic is scheduled for the 1st March 2011. I’ve got a couple more blood tests between now and then.
My conclusion? Ciclosporin has improved my eczema quite considerably. It’s not a magic bullet, and my skin’s still far from perfect, but it’s a lot better than it was before the treatment. I think the side effects I have experienced are a relatively small price to pay for the improvement to my skin, but my wife doesn’t share my opinion. She doesn’t like me being on the Ciclosporin (ever read the list of possible side effects? Then again, ever read the list of possible side effects for virtually every medicine going?), but then she doesn’t know how my skin felt before I was on it, and how distressing it could be. It’s still an ongoing process, and it remains to be seen how things work out in the longer term, but I hope I can carry on with it.
My advice for anyone who’s had their eczema treated by no-one but their GP for a few years? Ask for a referral to a dermatologist, and don’t take no for an answer. You have a specialised condition that needs to be assessed and treated by a specialist, and you’re entitled to that treatment.
Topic(s): NSGCCE, Posts from Huw, Referral Issues, Stories