Today I took my first step onto the new drugs regime, moving from 30mg of steroids (Prednisolone) up to 60mg. I’ve been taking the 30mg for 2 weeks and all that dose seems to do is keep me in a holding pattern, so I’m hoping this double the dose will actually start to do things to help. In a month it gets reduced to 55mg and then reviewed in clinic.
I also started taking the Mycophenolate Mofetil (MMF) of 500mg once per day initially. This is an immunosuppressant that is normally given to transplant patients so that their bodies don’t reject the transplanted organ. It works by suppressing the immune system, and at the moment that’s what needs to happen to me to get my skin back to normal again instead of the angry red sheet of patchy flaky open wound horribleness that it is.
Next Friday I up the dose of MMF to twice daily, then the week after to 2 in the morning and 1 in the evening, and then finally and thereafter – 2 morning and 2 evening at a total daily dose of 2000mg.
It then takes around another 3 months after that (4 months altogether from today) to reach full efficiency. While that’s all going on I’ll still be taking (hopefully) reduced doses of steroids and hoping that the MMF takes over and can stop my immune system from attacking my skin. Everybody is different and it’s a case of “suck it and see” to find out what works for them, and that’s where I am for the next few months.
Once my immune system is being well and truly suppressed then apart from my skin clearing up, then of course I’ll also be very susceptible to infection. I have to avoid the bad stuff like hepatitis, TB, and all the nasties that small children get such as chicken pox and so on. Normally my system is immune to those things now, but not if it’s turned off.
I’ve talked to my wife about handling this if her or the kids bring stuff home (all at 4 different places, school, college, work) and how I can live here at home without being put at risk. “Man cave!” she said. That means maybe us doing some work in the garage and turning it into a room for me where I can be away from any possible risk. I’m good with that apart from the cost. I guess I could do it myself although me and DIY don’t mix. And I guess I need to do it sooner rather than later while I can at least be okay (happy) with going to DIY stores and mixing with the great unwashed public. It’s all normal commonplace stuff like going out and handling money that I have to be concerned about now.
And at this moment in time, I’m not sure what will happen if I do catch something silly like a cold. Would it be enough to finish me off? Will I end up hospitalised in ICU? It’s possible I guess. Another question to be asked at my next appointment.
At any rate, I also have to have my annual flu jab, which I’ve been doing routinely for a few years now as I always seemed to get flu every single year and I don’t know why I didn’t start doing it earlier. It’s dead virus so it’s safe for me to have. Anyone can go get a flu jab from their local pharmacy now, and it’s cheap – under a tenner in the UK – so you just should and save yourself from some misery later. It works!
Also I found out that there’s a pneumonia jab, which I didn’t even know existed. When you’re weakened by something else, good old pneumonia will step in and quickly finish you off. So yeah, dead virus again and I’ll take some of that if it’s available to me. Maybe it’s not available to the general public and only given to cases like mine? I’ll find out.
And of course both of these jabs then raise another question I’ll need answering. If your immune system produces antibodies to the dead virus to protect you… and your immune system is off or greatly reduced… then does it actually produce the antibodies? Have I missed something here? Maybe my suppressed system will just be that. Suppressed and not actually off altogether. I need to ask.
