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.
Peter
ReplyDeleteYou would do well to visit, www.pmr-gca-northeast.org.uk and also www.pmrgcauk.com
You are in for a long haul. You have already found the forum and I do so hope it was not just a fleeting visit. There is also a Support Group in Wales and that information can be found on both sites.
A question, why Alendronic Acid, have you had a Dexa scan and is your bone density low?
Hi Peter - I have thought a few times recently a blog would be a great addition to resources but I wouldn't have the faintest idea where to start and I'm also a few years into this :-( However - welcome to the world of PMR, the club noone intheir right mind would want to join!
ReplyDeleteMrsK got to you first! Follow her links and we'll see you and welcome you gladly over there too. You will get a load of info and experiences to help you on this new journey and you will also boost the small group of guys we have on board. And in case you are worried - we aren't all over 70 (PMR strikes people in their 50s too) and whilst we are mostly slightly mad we don't bite! Well - we have been accused of being a bit harsh occasionally but it's usually about people offering wild promises of a cure for PMR. Without steroids, that is! (Not that they are a cure, but let's save that for later. They make life worth living again.)
Another question - why did she start you on 40mg pred? That is the starting dose for someone with GCA (PMR's big brother which can threaten your sight) and the recommended daily starting dose for PMR is 15mg, 20mg if necessary (British Association of Rheumatologists guidelines, on the site MrsK gave). The latest research by a group in Italy shows 75% of patients respond adequately to 12.5mg/day.
all the best - I look forward to following your posts so don't go and disappear ;-)
Eileen
mrsK - sorry for delay in getting back and thank's for bothering to comment. It's appreciated. I'll visit the sites you mention directly. I have no idea why Alendronic Acid and I havn't yet had a bone scan. But I'll ask.
ReplyDeleteEileen - glad to hear that age isn't the only qualification for getting this thing. Why was I started on 40mg? Apparently that's what they do at my GP's, because that dose works. I thought it sounded high too. But I am currently down to 20mg and holding my own, so things are moving in the right direction.
I'll post about this in due course.
Peter