Thursday, 28 May 2009

I'm Coming Down

This week I have been mostly tapering down my steroids and considering the influence of this on their side-effects. For the last two weeks - up until monday 25th - I have been taking 15mgs a day, so that'd be a 5mg taper from the previous levels of 20mg. My consultant wanted me to take this level for one week only and then taper down to 10mgs. However, as is my wont, I have chosen to ignore my consultant and devise my own tapering method. Actually to claim to be devising my own tapering method is a complete load of balls. What I have been doing is heeding advice given to me by my rhuemotology consultant sometime last year. It's nice to be able to still use his advice: I somehow feel he is unlikely to ever want to see me again having redecorated his waiting room, sluice room and one of his examination rooms in a beguiling new colour I call 'Hematemesis' on my last visit.

The gist of his steroid tapering advice is thus: lowering by one tablet, i.e. 5mgs, a week is too much, especially as you get to the lower doses. For instance, 20mgs down to 15mgs is a 25% reduction in dose, 15 down to 10 is 33% and then 10 down to 5 is a 50% reduction. His argument, which resonated with me, was that, just as you are reaching the lower levels of the steroid tapering by one tablet a week massively cuts the levels of steroid in your system. And therefore may upset the bodies levels as it replaces the artificial steroid with its own (or something like that). Now this could be a load of old cobblers but it sounds reasonable to me.

So, this week I am taking alternating doses of 10mgs one day and 15mgs the next, therefore achieving a steroid dose of 12.5mgs overall - a reduction of only about 15% (forgive the shoddy maths). This I will continue for another week after this and then reduce to 10mgs. This will involve seeing my GP in the meantime because to make this slow tapering work I need more preds than I've been given.

Interestingly, this week as the dose has been lowered I have seen an increase of:
  • Spots. Curses. Shaved the blinkin beard off too, so I've got nothing to hide them under... Strangely they seem focused on my nose, which is rubbish (and, one has to note, would not be hidden by a beard. Unless I was some sort of wierdo. Which I'm not. Well, not in that sense anyway), and continue their dominance of my scalp. Honestly, it feels like braille up there...
  • Roid rage. Yesterday in particular I spent the day with a knotted ball of fury growing in my stomach. Unfortunately, as usual, it manifested itself in me being snappy at the family, and nearly erupted in the cinema (took boy 2 to see Coraline in 3D) due mainly to a huge number of imbecilic adults talking/walking about/reacting to a film for kids as though they were children themselves... grrrrrr

Which leaves me wondering; is it the steroids themselves that create these side-effects or the changing levels of prednisolone and my own bodies steroids, i.e. it doesn't matter much about the size of the dose, more influential are the periods when the dose changes. (there needs to be a ? somewhere in that sentence, but I can't work out where, sorry. I'm going to stop thinking about it before I get angry with punctuation...)


msmachine said...

Good question. My partner has definitely noticed that I am very difficult to be around while I am tapering. I think the change in levels has a big effect. I am trying to get off Prednisone. I want a new drug!

aliwalidoodah said...

I get annoyed with imbeciles in the cinema too, which is why I don't go. But this has no relation to my steroids (when I was on them), I am just a grumpy old woman. Meh.
I totally agree with that tapering advice, makes a whole lot of sense to me. Hubby has just started tapering (as the infliximab has worked wonders over the last four days, tocuh wood) and is using the same principle. But good lord is he grumpy.

Rich said...

Hi MS, you're right: prednisolone is bloddy rubbish. Unfortunately, every time I try an alternative I end up back in hospital... Bugger.

Hi Ali, glad to hear the infliximab is working for your husband. This tapering method seems pretty plausible doesn't it? To be honest it doesn't really take steroids to make me annoyed in the cinema either - in actual fact I do believe I am becoming fully misanthropic.