110/365 – Adapting to a lower steroid dose

I’m now down to less than half the steroid dose I was on at the start of the year. My consultant is keen for me to come off the steroids completely and at present I’m working my way down by 1mg a week. By the end of May I’ll be steroid-less at this rate, however around the same time I’ll also be walking the Camino. I’ve been told to adjust accordingly so it may be June before I’m completely free of them.

Right from the start, the steroids have been a challenge. First of all there was the preconception of what they would do to my body that made them really hard to swallow. I was determined not to bloat or have the ‘moon face’ look associated with the drug and so made it clear I did not want a high dose. When I started taking them, I was even more religious about my exercise regime for fear of waking up one morning bigger than when I went to bed. Although there was a appetitie increase on them, I thankfully didn’t bloat. What I did find is suddenly I had a surge of energy that made it hard to sit still. I wanted to do it all now and wasn’t particularly fussed about rest or sleeping. Elaine used to jokingly ask for a dose when she felt that she couldn’t keep up with me. After feeling low and fatigued for a long time, it felt incredible to have energy to spare. After a few months that levelled out, and the effects became less noticeable. 

A long goodbye

I’ve been gradually reducing my steroids since last summer, but when my speech symptoms or muscle fatigue flare up my consultant has encouraged me to step up the mgs. I think that’s partly why I’m not feeling too smug about being on a low dose – I know my MG could turn and I will be right back where I started. Or will I? If my symptoms do flare up before I’ve come off them completely I’ll try stepping up just a few mgs and see how I get on. 

Doctors are keen to get you off steroids because of the risk to your bones, the increased risk of high blood pressure and diabetes – who am I to argue. 

The first time I take another one 1mg pill away, I start to think about all the what ifs. But this is part of the master plan – first stepping down my steroids, then being completely off them, then gradually reducing the aziathioprine and mestinon. Finally, a drug free existence. While I know it won’t be today or tomorrow, it’s a step in the right direction. When I think about a day when taking tablets is not my first priority, coming off one drug actually feels like a significant step forward.

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