Data Sheets

The was a time when the best you could expect from your packet of aspirin was an instruction printed on the outside that told you to take two when you had a headache. Half dose for children and the elderly. Just who the elderly were it did not say. It’s nothing like that now.

When I finally get round to it and unpack the Package Leaflet: Information for the User sheets that lie, folded and fierce at the bottom of my various packets of dope I know I’m in for the long haul. Set aside a few hours for consideration of the instructions it should warn on the packets’ outsides. I reach for my glasses and settle down.

The drug manufacturers, naturally, are trying here to protect themselves. They get into things in depth, as if this were some sort of EU regulatory obligation and this was the discussion appendix attached to an order in council or the support data for ministerial decision or, better, the scientific justification for a conclusion come to in thermodynamics, super string theory or cosmology. The clauses, sub-clauses and numbered and bulleted points proliferate before my eyes.

I learn vital things. Omeprazole can be administered by breaking open the capsule and pouring the content into a pot of yoghurt. The stuff is good for Helicobacter Pylori and Zollinger-Ellison syndrome as well as something described as the inhibition of the proton pump. There are a few E numbers in the capsule shell and then Oxide E172 along with Propylene Glycol in the ink used to print the manufacture’s name. Dr Reddy. Good man. Comes from Hull.

Most of the sheets are single pieces of paper but not those that come with Prednisolone. These go on for ages. They include warnings against just about every eventuality from falling down the stairs to having your face inflate the size of a Belisha Beacon and have a list of possible side effects long enough to unsettle even the most unconcerned of users. Are these things going to happen? And how many of them? Will they all occur at once? What will it be like going down the road sweating, with brittle bones, thinning of the eye tissue, painfully itchy skin nodules, weak arms and a humped back?

The more I read the more concerned I become. As a device to cover legal backs the sheets may be fine but in terms of patient care and support they are hopeless. You need a course in tranquilisers just to overcome the anxiety caused by the warnings.

I look a few things up on the internet. The results are worse. Everything is the end of the world. The dreadful always happens. It’s worse in America than here. Where NHS direct is circumspect and considered the US equivalent hits you hard between the see your physician immediately eyes.

I trail down to the GP’s to ask. Is all this bound to occur, I stutter? Will I turn into a slow-moving blimp constantly looking over my shoulders? She smiles. She has an excellent pull you down from walls manner. Of course not. But there may be some side-effects. We’ll have to see how it goes. Maybe they won’t affect you, they don’t affect everyone. Not everyone is the same. And anyway you need to consider all this against the background of the PMR itself. That condition is far worse. And you won’t be on the Prednisolone forever. No? No.

I get an appointment to come back in a week. Let’s see how you are then.

Taking the Tablets

When I get the bag of drugs home and lay them all out on the table I am overwhelmed. There are so many of the things. The brown tubs of Calcichew, the smart bright white boxes of Dr Reddy’s Omeprazole, and the small pink and orange op art boxes of Alendronic Acid, marked for ‘oral use’ in case you thought you might have to rub them in. But by far the largest in number are the toppling piles of Prednisolone, box after box. These are white splashed with green and blue, Damian Hurst could have designed them, maybe he did.

Inside are the detailed instructions. Package Leaflet: Information for the User. The small print. And just like that on an insurance policy, it covers every eventuality in the fullest of detail employing the smallest of print. No one is going to sue these drug companies for not giving out comprehensive and magnificently detailed information on just about every aspect of their product bar none. The leaflets even show where the drugs are made. The Prednisolone come from Eastbourne, where the Nazis would have landed had they come.

I have to take Prednisolone at the rate of 40 mgs daily, in the morning, and after eating. This means eight tablets. I push them out of the bubble wrap and swallow the first set immediately, just as I’d been instructed. It’s 10.50 am. Am I going to feel elated, nauseous, faint, spin headed, or pain free? It’s that latter thing I need so badly. Something, anything, to get these pulsing PMR spasms from out of my arms and out of my legs.

But there’s nothing. Not immediately anyway. But by the end of the evening, touch wood, throw salt over my shoulder, whisper it, the pains do seem be lessening. But they can’t be. Not that swiftly. Yet they are. I get my first night’s sleep in ages that doesn’t depend on big bomber pain killers and have in attendance inside my head the swirling fog.

By day three I guess the PMR has reduced from 100% active to something less than 10%. There are still trickles of pain, now and again. But nothing constant. And sleep comes so easy, it’s wonderful. Can this be the cure? Am I imagining it? I keep sending my mind down my legs and round my arms to check. Anything happening? Has it gone? Will it come back?

But it doesn’t return. In fact the trickles of PMR discomfort themselves start to retreat. As the days pass a certainty grows that PMR is fading. Everything is weak still, I find it hard to lift things and to crouch and squat. But the pain has gone or just about. Prednisolone, right now I love you. What else can I say? But steroids and especially this one are two-edged swords. As I’ll find.

Maybe I should check the detailed package leaflets next.

How It Begins

In the pharmacy they ask me the question. Are you expecting three hundred Prednisolone tablets? It sounds huge number. I don’t know. Am I? To be safe I nod and, after checking that I am who I claim to be, they hand me the bag. It’s a huge thing like the sort the old used to get when I was younger. Prednisolone tabs by the packet load. Tubs of Calichew. Boxes of Omeprazole. And my favourite, the one you take weekly, standing up, Alendronic Acid.

I set off up the road. There’s late autumn sun shining on me but I don’t notice. Am I gripped by fear and apprehension? Not yet. The polymyalgia is still riddling my proximate muscle group, wrapping itself round my neck and making everything feel appalling. It feels like it’s time to give up.

There had been arguments at the doctors. I’d visited my local GP who has a surgery a ten minute walk down the road. I was convinced that this was some sort of reaction to statins, just like it says in the statin small print that comes inside the box. May affect some people. Me. All I had to do was give up my Simvastatin, wait a bit for the stuff to clear the system and everything would settle down. Only it had been eight weeks so far and things were now worse than they had been. Hard to get out of bed in the morning. Impossible to sit in a car for longer than ten minutes. Pains when squatting. No, couldn’t squat. Aches now starting in my upper arms. Hell on earth when I tried to sleep.

So it clears once you are up and about? It does. And returns when you sit still for a time? Yes. Getting worse? Certainly. On a scale of 1 to 10 how bad is it? With 10 being dreadful and 1 being clear. 7. Mmm. I think it’s this. She turns her screen to face me and there’s a description of Polymyalgia Rheumatica. I’ve never heard of it. It sounds like something you are born with, a disease of the nerves, something that creeps up out of the genes. A thing others develop. It usually affects older women, especially those over 70, the GP gently tells me. But I think it’s what you’ve got. She looks concerned.

I agree to two blood tests a fortnight apart. If my ESR and CRP rates show elevation then that indicates inflammation of the muscles, a PMR pointer. I see the nurse and take the first one. I don’t look as the blood enters the syringe. I’ve passed out before while casually gazing. Had to be brought round by nurses applying cold compresses. Once while having an ingrowing toenail excised fainted and had to be revived with oxygen. I have learned simply not to stare. Usually does the trick.

When the results come in they show elevation. The first test throws up an ESR of 19 and the second of 40. The CRP shows first 28 and then 30. On my return to the surgery the GP tells me that she’s pretty sure this is Polymyalgia but that luckily there is a treatment. And one that works every time. She doesn’t actually say there’s a miracle cure available but I can hear the words hovering somewhere above her head. I am given a prescription for prednisolone and then warnings about how prednisolone is a steroid and that steroids have side-effects. But remember that the condition, the PMR, is far worse than any possible side-effect and the steroid will see that off, says the GP. She sounds like she means what she says but I am unconvinced.

Can I have some more pain killers to get me through the night, I ask? I’ve been taking everything from Naproxen, a sort of super ibuprofen, to heavy dose Co-codamol. These knock you out, get you through the dark hours but during the day leave you in a permanent fog. You won’t need them, she says, smiling. Hard to believe, that answer. In fact I simply don’t.

So here I am, crossing Newport Road with my drugs bag. And my PMR description print-outs and my instruction leaflets and the notes I took during the consultation. And a load of fear getting in the way of everything. Putting the things down my throat comes next.