Today was my appointment with my dermatology consultant Dr H at 12:30. This appointment was all about the way ahead and I’d been doing some thinking so I sort of knew where it was going before we started. First she examined me and there was no real change. The 30mg Prednosolone steroids were doing the same thing as they did when I had this dose in April, issued by my GP before I was diagnosed with Pemphigus Foliaceous (PF) – they were just keeping me in a holding pattern with maybe a little improvement but not much, and I knew something had to change dramatically if I was going to stand a chance of getting back to “normal.”
She went through the letter I’d written and confirmed everything I’d put down as my understanding of my condition and the way ahead. She said she’d never had a patient do that before and she was impressed (I thanked her) and I think I piqued her curiosity as I know I look quite unassuming and unremarkable.
But it’s what goes on inside your head isn’t it? And what you’re actually capable of that people don’t know when they first meet you, and long experience has told me that people nearly always underestimate me based on my appearance. I’m short at 5′ 4″ (possibly less now I’m older – we all shrink a bit) and you will typically find me in shorts and a t-shirt at home all the year round, and when I’m out and about I’m never more comfortable than in a pair of jeans and a criss-cross tablecloth patterned shirt of some kind with some comfy thick socks and soft suede shoes or boots. And I’m about 20kg overweight with a BMI (Body Mass Index) of fat bastard. I’m working on that.
If you need to read more about me and what I’m capable of, you can do so here.
Back to the appointment. I was keen to get off the steroids ASAP and I let her know this. It’s having these discussions is when you start learning the real important stuff, and go away with a whole pile of questions spinning around in your head to go and research. You might have realised by my description of part of my working life on the link above, I’m GOOD at research, it’s one of the things I do really well.
Something we’d discussed in the previous appointment two weeks earlier was the use of “steroid sparing agents” such as Mycophenolate Mofetil which is an immunosuppressant drug given to transplant patients to stop their own immune system from rejecting the donor organ. Another scary drug as long term use can cause cancer, but not as scary as steroids in my opinion. I was told there are others less severe such as antibiotics and vitamin B3 but it depends on how well I respond to them. (I’m thinking about that and have some things I want to try, more at a later date.)
Because this is the crux of it all. My own autoimmune system is broken or imbalanced and is attacking my own skin. This is supposed to be chronic and incurable, but I have yet to be convinced of that and I’m not the kind of person to give up just like that.
First line of treatment in cases like mine are steroids. They’re the most effective in the shortest amount of time. So even though they scare the crap out of me at what they’re doing to future Frank’s body (and future Frank NEEDS that body in good working order), I know that right now it’s what I need, so I at first suggested I start on the MMF (Mycophenolate Mofetil) and drop the steroids.
Can’t do that. It turns out that MMF can take 4 months to reach full effectiveness. I have to take the steroids while they kick in and then hope I can stop the steroids. Crap.
Me being me, logical and always thinking one step ahead (like a carpenter), I decided there and then that what I needed was to double my dose of steroids. I’d already researched and found that up to 100mg / day was sometimes prescribed, but even to me that seemed a little high so I suggested 60mg. That scared Dr H and she said she’d be willing to go as high as 40mg but she’d need another Doctor to hold her hand on any higher and so she went off to fetch Dr Hegarty (?) – I hope I’ve got his name right, there was a lot swirling round my mind at this point. I’ll correct this later when I can confirm.
He took a look at my notes and recent blood test results, then looked at me and appraised me. He said words along the lines of “I think you’re right Mr Haywood. I’ve seen PF before and found the best way to treat it to normalise the patient is to hit it hard with steroids to begin with and then gradually dial it all back until we find the right balance. Let’s go for 60mg of Prednisolone while we build up the MMF into your system. You’re overweight but otherwise in good condition with no previous medical issues at all and apart from the PF you’re normal. It looks good to do it and we’ll monitor your bloods weekly to keep an eye on you.”
Dr H was already sorting out the blood test forms and writing the dosages out for me and writing the prescriptions. They’re THAT good and I’m so glad they have my back.
Then I went through the urine sample, weight and blood pressure. Weight was down from last time as I already knew, and so was my blood pressure, something like 128/82 which is perfectly normal. Thanks to exercise and porridge mainly (I’ve got it down like that before), and beans on wholemeal toast. In other words, just doing the right things.
So I think I’m okay with this. As far as I’m concerned the high doses of steroids are temporary. A few weeks, 3-4 months while the MMF takes over. That’s my hope and plan. In the meantime, I’m eating better food (on the whole) and consuming less calories, exercising, and losing weight when both doctors told me I wouldn’t be able to as the steroids would prevent me, keeping me hungry and making me want to eat.
But I have willpower. I want to get well. I want to be rid of this incurable disease. I will attempt to do it through medical science with drugs and massive changes to my lifestyle.
I firmly believe that fat is one of the contributing factors because… guess what? Fat is one of the things that intereferes with the normal function of the autoimmune system and can cause it to break as in my case. Studies in 2016 found a biochemical link that I need to do more research on to understand properly, but at first reading it looks like researchers have discovered there’s a mechanism that turns OFF the immune system at the correct and appropriate time (biochemistry) and an imbalance can be caused in some circumstances that prevent this normal inhibiting factor. It’s believed there’s a relationship that means that this is true not just of PF, but could also be true of ALL autoimmune problems from arthritis to Multiple Sclerosis.
There’s hope for a lot of people if their conclusions are correct.
I could be barking up the wrong tree, but right now I believe (I HAVE to believe) that I can put my body into a state where my immune system can regain its balance and correct itself. So I’m working at that with a double pronged attack. Drugs to begin with. While they’re having their way with my system, I will lose weight and become fit. And while that’s happening I’ll be researching a possible therapy which I will then have to sell to my Doctors and possibly the local NHS Trust if I think it sounds viable.
I will post it all here.
