Prednisolone and Ajax - Conquering the World

I’ve taken just one tablet today.  A single white milligram pill of prednisolone, swallowed for old time’s sake, to keep the eczema off my skin or as a bulwark against pain.  I don’t know.  I used to take forty of these things daily.  It’s gone on for so long.

I’m heading for UHW (University Hospital Wales) for what is euphemistically called a procedure.  This one is to insert a small camera on the end of long flexible rod and look inside my bladder.  Guess where they insert it.  I’ve had it done  before but the anticipation remains icy and deadening.    The joy of cystoscopy.  Someone should write the book.

Ambulatory Care, which is what it was when I began attending a decade ago, is now known as The Short Stay Surgical Unit.  This, presumably, because attendees had no idea what the word ambulatory meant.   At reception a woman asks me which of the two addresses shown on the admission form is correct.  I tell her the latter and she looks at me blankly.  The second one, I explain, pointing.  Another word lost to English forever.

Reception was new at the start of the nineties.  Back then hospital management were really keen on making  clinical areas look homely and welcoming.  The place was done out with wallpaper, carpet, ashtrays, wooden-armed armchairs and a forest of potted plants.  Filing cabinets were hidden .  You were supposed to feel comfortable here much in the way you were in rooms where funerals were arranged or rapes reported.  But twenty years on things have changed.

To start with there are the notices which ban things: food and drink, smoking, verbal abuse.   There’s also a new one that also bans electronic cigarettes.  This was rushed into place to forestall arguments at the desk made by those who insist this sort of smoking to be totally different from the other sort and therefore okay.  The notice they had showing a drawing of a phone with a line through it, however, has disappeared.  Around me the elderly (almost everyone here is over sixty) fumble with their mobiles.  They carry them, they imagine, to fend off emergencies.    Today they are  explaining to relatives, friends, and mis-sold financial product compensation fixers that yes, it is a nice day but no, not now, they’re in hospital. 

The framed art works have also been added to.  Ambulatory Care always went for prints of flowers which are still largely in place.  Giant reproductions of ivy and maple leaves, huge red poppies in two varieties.  To them have been added Christmas decorations, strings of tinsel stuck in place with cellotape, plus an artificial tree.  The sound system which in the past has always played stuff by Manfred Mann and Gerry & The Pacemakers is loudly knocking out Christmas songs from Bing Crosby.  Deck the Halls, Jingle Bells, Let it Snow, Let It Snow and the inevitable White Christmas which as far as I’m concerned he can dream about for as much as he likes, I’m not joining him.  The music has a nineteen-fifties austerity  saccharine slush to it that gets inside your ears and won’t leave.  I’d put my iPod on but then I wouldn’t be able to hear my name being called.  

I’m there for 40 minutes.  The tape rounds on itself and begins to repeat.  The receptionists all hum along as they shift files from one stack to another and then forget where they’ve put their pens.  Eventually I get inside.  This is after two further sessions of sitting in line in different rooms, a blood pressure measure, an arm labelling, a questionnaire completed, an authority to proceed signed, clothes into a plastic bag and special pants put on. 

They find something.  There’s a dull sinking in my stomach.  With my agreement they then decide to remove it there and then.  I’m strapped up and the growth is sliced and cauterised, both sides.  It takes around five minutes although this feels like fifty.  It's not without discomfort.  By way of diversion the Muslim nurse tells me she’s finished her Christmas shopping which is reassuring to hear.  I haven’t even started mine.   I then get my glasses returned to me and I’m helped back to the post-op area.  Seats, trolleys, dumper bins.  I get handed a cup of tea. “You can go home once you’ve passed water”,  the receptionist tells me.  “Have a biscuit, they usually make you feel better”.  It's hard to resist but I manage it.

At the desk a cluster of  ancillary staff and nurses are discussing household cleaners and how you can’t get Ajax anymore.  This is true.   Ajax, the wonder product, used to be able to see off just about anything.  If you had a tin at home you were ready for the world.  Just like prednisolone.

I’m allowed to leave.  Taxi home, handful of discharge leaflets, anti-biotics and a letter for the GP in my hand.    Back again in the spring by which time Bing Crosby will have been boxed and we’ll be back to The Searchers and The Fourmost.  Clean and clear.    Something to look forward to.

Flare

This is a word I’d barely considered in the past. A flare was something that temporarily lit the sky, that burned bright and long and cast shadows in strange colour over all it touched. Flares came out of guns and flew into the air. I’d never fired one. Never been near anyone who had. A flare in the night, a brief and fleeting streak of light that was there and then gone.

Polymyalgia flares don’t quite do this. They are something else.

My steady reduction of the Prednisolone dosage had been going well. 20 mgs down to 15 mgs daily with no perceptible change in how the condition felt. Then, on the advice of the GP, I made an attempt at talking 15 mgs one day and 10 mgs the next. See how you get on with that, she’d advised. Don’t go any lower over the Christmas period, we want to avoid problems then. We do. But then problems at Christmas come with the territory, do they not?

So what did I do? Followed her advice to the letter, set about the new 10/15 fluctuating dose the week before the festivities, followed the regime through the days of joy and holly, pudding and cake, drink and dancing, carol singing and wishing you could find a quiet room to lie down in. And then, unaccountably, and in a rush of I can do this thing bravado I knocked the dose down again. A week ago. Reduced to 10 mgs daily. I’m getting away from you, Prednisolone, I jeered. I will subdue your power. I will overcome you. I will win.

Days one to three at this new lower level went well enough. The nose bleeds lessened, the sleeping patterns began to steady, the depressions held back. And then I started to feel it. That polymyalgia echo up the backs of my legs, that steady pain of the proximate muscles that nothing seems able to shift. First one leg then both. Throb throb. Throb throb. Pain again for the New Year weekend. Just what I had been warned to avoid.

To fix it I’ve put the dose back to where it was several weeks ago. 15 mgs daily. And it has taken at least three days at this older level for the flare, because this, it seems, it what I have been suffering from, to subside.

It’s a setback, a depressing reminder of what lurks beneath. Polymyalgia is not cured by prednisolone, just held down. It’s like a carpet that covers a ugly floor. The sight of it may be gone but down below the floor is still there.

I’ve turned my SAD lamp on again. This is a my Lumie Mediterranean light wonder, a certain cure for winter depressions. Sitting in front of it is a joy, even with prednisolone coursing my system and PMR mumbling underneath. I’m playing Roy Orbison records and allowing the great man’s voice to soar upwards and take my spirit with it. It’s over. It’s over. Problem is it’s not. Not yet.

Weight

On the list of side effects contained in the Package Leaflet: Information for the User in my many boxes of Prednisolone is a warning that taking the steroid can lead to weight retention. There’s reference to the developing of what the notes indemonstrably call a rounder face. There’s a note on salt and water retention. There’s another that suggests users will have increased appetite leading to weight gain. When you look into these Prednisolone characteristics they emerge as something you really don’t want to happen. Moon face, humped back, weight inflating your belly. Just how you want to be over Christmas.

I asked the GP what she thought. It doesn’t happen to everyone, she told me. I started checking the mirror daily. Could I see fat accumulating around my neck? Was my face like the moon? Not yet. I’d never been really heavy but was slightly overweight when the PMR first stuck. Slightly overweight in my terms, that is. Friends and loved ones said I looked fine. But I didn’t feel at my best. I needed to lose half a stone. I couldn’t allow the Prednisolone to get in the way. What could I do?

Further reading revealed a number of contradictory theories:

1. That the weight gain came from an increase in appetite
2. That the steroid led to salt and water retention
3. That the moon face was the result of body fat moving around from some other part of the body
4. That you could fight it and win
5. That you’d never succeed so why not just keep your head down and suffer

Internet. Hell on a bike, it’s never definitive. It’s ever changing. Looking for a complete answer is like searching for a piece of the true cross.

I visited the chat rooms and read what had happened to others. There were stories of people putting on stone after stone, of developing camel backs and faces so round they could go bowling. There were tales of people who had taken to their beds. Stories of some who’d just accepted it all and carried on. There were also tales of people who’d managed to keep their weight level by dint of healthy eating and hadn’t gained an ounce. The problem was that you never knew where the respondents had started from. Were they unfit elderly and overweight anyway? Or were they super-fit runners without any spare fat at all? Did they have the will power to avoid chocolate and cheeseburger? Or did they eat these things daily just to get through life? You couldn’t tell. You didn’t know. You had to make it all up yourself.

I decided that it was time for me to take my eating and drinking in hand. There would be things I’d need to avoid and substitutes I’d need to learn to love. I already owned a set of Wi-Fi scales (made by Withings, a brilliant invention). These would transmit my weight to a special web site where I could keep a recorded track. Stand on the glass top in the morning (recommendation: do this at the same time daily and, preferably, naked), check the resulting graph on the computer later. I’ll beat you weight. That’s three battles I’m now engaged in. PMR, Prednisolone and heaviness. Nothing like fighting the world on all fronts.