Prednisalone alert

stickywicket
stickywicket Member Posts: 26,104
edited 22. Nov 2018, 17:41 in Living with Arthritis archive
For everyone, not just those with autoimmune types of arthritis.

Some will have read that I was prescribed 25mgs daily of pred for an ear problem. (Glue ear, as it happens which pleased me as I had thought that a problem for young people.) Mine was probably the remains of a bad chest infection I had this time last year.

I had thought that just stopping it after two weeks was a bad idea and I said as much to the doc. I know it can be stopped suddenly for very short courses but this didn't seem like a very short course or a small dose.

But the ENT doc assured me all would be well

Yesterday I fetched up at A & E and the doc who saw me there did a double take. He said you could get away with it for a week. maybe even ten days. Not a fortnight.

I'd taken my last dose on Thursday. On Friday I felt very tired. Possibly par for the course. On Saturday I felt very tired, my arms felt oddly heavy and hard to raise, I'd no appetite and started, as the day went on, to feel nauseous. It was all I could do to stay awake(ish) until my final painkiller at 10pm but I managed to take it, with a little water and half a ginger biscuit. Then I hit the hay.

Between 10pm and 9am I was in and out of the loo, retching but having nothing to bring up, about eight times. At 9am I dialled the out of hours people.

So that's how I ended up in A & E and left with an anti-sickness injection in my thigh, more anti-sickness pills to dissolve in my mouth, doubled up omeprazole for two days and a list of count down pred ie 20 mgs yesterday and today, fifteen for the next two days etc etc. Plus a light, high-calorie diet instructions - basically custard and yoghourt until everything remained down. By late afternoon things started to ease up. By suppertime my arms worked again so I could manage to feed myself and not have to have Mr SW sloppng custard all over me. Last night I slept and today I feel fine.

So, please be careful. If it sounds wrong, by all you've been told previously, it might well be wrong. I should have checked with either my GP or a pharmacist. I didn't and paid the price.
“There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oh dear, oh Sticky how horrid. One would hope that a doc would know better but evidently not. You were right to trust your gut reaction, it's a reflection of his professionalism that he did not listen properly or react appropriately to your concerns. I suppose that one problem docs have now is they regularly face patients who are 'experts' in their conditions because they read the net so it has become harder to distinguish them from those who have genuine knowledge and understanding due to breadth and depth of experience. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Not so much a slow descent as falling off a cliff edge Sticky. What a horrid experience. One hopes that the necessary internal workings have communicated between A&E and ENT(I'm assuming same hospital but perhaps wrongly?),to check procedure and raise a training point but I would be inclined to write a letter (perhaps Mr SW could do it for you while you recover) to ensure that the person concerned doesn't make that mistake again. After all you did your bit by querying it at the time; someone who was not familiar with pred wouldn't have even known to do that and might have delayed getting the bad reaction checked out.
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    How horrendous Sticky, I do hope you are on the mend now, you really are going through the mill at the moment.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Thank you everyone and, daffy, that's something I keep thinking about. I really (a)don't want to get anyone into trouble and (b)don't want anyone else to go through this. My problem is that, for the first time in my very many years of docs and hospitals I did report a doctor when I was in in September. She wanted to kick me out although my pain was still completely uncontrolled between 3am and 10am. The problem was that they had tried oromorph four times. It did absolutely nothing and I refused the fifth because I saw no point in it. She said (with my lunch going cold and without even drawing the curtains for privacy) that there was no point in my staying as I was refusing treatment. I had to plead to stay. My son, who was there at the time, said it was the first time he'd ever seen me cry. I didn't actually report her but, when a head honcho came round a day or two later doing a 'random'(?) sort of quality control thing, I did mention it as, apparently, she was notorious.

    So I really don't fancy acquiring a reputation for getting staff into trouble. But.....
    I will see the consultant again but not until December / January. I don't know whether or not the doc I saw in A&E will say anything. It's difficult.

    Currently, I'm doing fine on my pred-tapering regime. No problems at all.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Sticky I fully understand your reluctance to 'make waves', but the implications of the mistake are serious - not least for the future of the doctor concerned if it happens again with a less successful outcome. Staff may have their own misgivings but be reluctant to act on them due to(understandable) lack of faith in the whistleblower procedure. However:-
    1. The person concerned seems insufficiently au fait with the drug involved; was that a one off or is there a training issue, and are there other drugs it may apply to?
    2 When you queried it, the professional response would have been to check, and show you the reason for the decision - which of course might have prevented the mistake.
    3 You came out of this OK(ish!), not least because of your insight which made you quicker to act than might otherwise have been the case - someone else might not be so lucky.
    4 Everything comes down to money these days, so how much did that one person's totally unnecessary and completely preventable mistake cost the hospital A&E department?
    You are not making allegations of the kind which cause immense problems both in the investigating and the fallout(such as sexual abuse, racism, discrimination), and neither is this a case of clash of personalities. It is a black and white, factual, mistake, the consequences of which are there in the hospital records, and the causes of which need investigating.
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    It is hard but I think you need to report it to PALS at least. We all know Drs can make mistakes, like us they're only human but their errors can have huge repercussions.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    Hope things have vastly improved. X
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, how's life on the pred bouncy castle? I guess it's deflated a little: as the tapering begins the capering ends. (I'm rather proud of that one! :D ) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    OOh a cracker there, DD :D Well done!

    All good here, thanks.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Well, the deed is done and thanks for the nudge, daffy. Without it I might never have managed to write to them.

    I made it clear I didn't want it regarded as a formal complaint but I did want it taken seriously to ensure that all their consultants knew how to prescribe corticosteroids and how not to.

    For the record, I took my last one yesterday and all is well.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    For what it's worth I think you have done the right thing. I often wonder if we expect too much of doctors and their knowledge, they deal with so much for so many that I don't think it surprising there's a slip every now and again: the difference with medical slips is the distress they can cause.

    An ABC of pred: astonishing, beautiful, controversial, delicious, evil, fantastic, gorgeous, horrifying, incredible, joyous, keen, lovely, marvellous, naughty, oppressive, poisonous, questionable, random, superb, terrifying, unpleasant, vivacious, wonderful, eXhausting, yummy, ummmmmm . . . . DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    I'm all for accepting that everyone makes mistakes but I don't think docs should make a mistake over what may be safely prescribed and what may not. I prefer errors on the side of caution.

    Now then....I'll definitely go along with. astonishing, controversial, evil, fantastic, horrifying, incredible, marvellous, poisonous, questionable, terrifying and wonderful. Thus, illustrating, at the very least, 'controversial' :lol:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    I'm glad you did write Sticky. I hope the hospital now takes the opportunity to take the person concerned to one side to establish why the mistake happened, and breathe a sigh of relief - and gratitude to you - that it hasn't been splashed across the front page of the local paper, nor been made a formal complaint. Both of the latter could, and in many cases would, have happened, so I hope they respond quickly and appropriately to your letter.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I hope the hospital will take the opportunity to learn more about the dangers of incorrect prescribing and to appreciate that patients can be seemingly 'negative' without an agenda, purely for the greater good. The devil is in the detail but the detail is often easily lost. Familiarity does breed carelessness, the first step towards contempt. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Thank you both. They did reply very quickly, to their credit.

    Unfortunately, it seems that either I officially complain or nothing happens. This is not what I wanted, as I explained - again :roll: But, with it being either that or nothing I told them to treat it as a complaint.

    I feel really uncomfortable about this. Talk about a rock and a hard place! I now wish I'd taken the trouble to find out the name of the consultant. I could just have written to him directly and cut out the higher echelons of patient care. But I didn't and now the ball is in motion. C'est la vie.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    That's not the result you wanted really was it? I can understand your reluctance, but if that's the way they want it done then so be it. If you had written personally to the consultant then the outcome could well have been the same with respect to making a formal complaint.
    To me it does raise a couple of questions though. If you were not willing to go down the formal complaint route would the matter just be quietly sidelined/ignored and, following on from that and more generally, how many people are reluctant/deterred from taking matters further and so again things are not investigated? The fear of some form of negative outcome in terms of future care is a common one and does lead to patients keeping quiet rather than speaking out. It's unfortunate because as good businesses recognise negative feedback is the opportunity to improve, and can bring to light things which would not otherwise have been picked up by the business itself.
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    I don't know why. At a guess, maybe it's to deter 'frivolous' complaints and make people think seriously about what they're complaining about. who knows? Anyway, 'tis done. We'll see what happens next.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Well, that wasn't great. I got a reply yesterday from the head of ENT. He's spoken to my consultant but it seems to be within guidelines to stop pred suddenly unless you've been on 40mgs for over three weeks. Their pharmacist confirmed this and it's true when I looked it up online.

    But I can't believe I'm the only one though, he says, I'm the first to complain. If these are the guidelines I think they're wrong.But short of writing to every firm who manufactures them..........
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    As you say Sticky, not great, and it raises questions about why some medics are saying one thing and others(in effect) the opposite, and whether/what data exists(patient outcomes) to inform or evaluate the difference.
    You may be the only complaint they've had but that doesn't mean you are the only one to have been affected. However there's not anything to be done now - they are satisfied that they are doing things correctly - but I think it was still worth you raising the issue. If nothing else you(and those of us who've been following this) are better informed - and possibly forewarned!
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