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Prednisone reduction

Posted , 8 users are following.

Anhaga
Anhaga

I have an appointment with my GP next week so want to go armed with lots of info.  Started with pred 9th June 15 mg.  Stayed on this dose for 4 weeks (miracle cure after at least a year of suffering).  Started reduction by 1 mg every week.  Fine until I went to 9 mg.  Symptoms returned although not as severe as before.  Stayed on for 10 days, got worse, so upped to 10 and have been there since ((21st Aug), much better but not as well as I was at the beginning of the treatment. Obviously would like to get down at least to 7 as soon as safely can.  Have found in the forum that idea of taking current dose for 6 days, then reduce for one, take old dose for 5, reduce for one day, old dose 4 days and so forth until the new dose becomes the old dose. Are there aother options?   Would I be better advised to try dropping by 1/2 mg but maybe more frequently?  Should I be considering upping the dosage again (with GP blessing) in order to clear symptoms completely again before trying to wean off again, or is this as good as it gets (which is not bad, I have to say, and I don't seem, so far, to have any major side effects).

1 like, 32 replies

32 Replies

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  • Silver49
    Silver49 Anhaga

    Posted

    I agree with you, Anhaga. An information sheet from the GP would have been so helpful especially after the initial diagnosis. I think the follow-up visit would have been a good time to have some info as one is then left thinking all will be well, having been told to just follow the sheet with the reduction advice! I did the same as many on this site and went mad cleaning etc as I was in so much pain and exhausted prior to diagnosis that I was doing the minimum. Any thoughts on this idea EileenH?
    • EileenH
      EileenH Silver49

      Posted

      As I have said, we provide information on the forums and there are support groups in some areas of the UK and there is a particularly good website from the northeast of England group. 

      Dissemination of information by heathcare providers is only as good as the doctor or nurse - and many disagree with things we say. Why I have no idea since we've all had the darn disease!

      We are working to educate everyone - not just patients but doctors as well. But it needs funding - I spend probably 2 or 3 hours a day on the forums every day almost, even on holiday when I have internet access. No charge. But the booklet we have written cost money to print and we are almost at an end of those copies and it was only printed in May! Without funding we can't do more - we are almost all retired, not wealthy CEOs of companies!

      If anyone has any ideas there - feel free to throw them in the pot!

    • ptolemy
      ptolemy EileenH

      Posted

      What sort of cost are we talking about for a run of 500 hard copies? How much would it cost to make it an e-book? I am not really into publishing costs. 
    • lodgerUK_NE
      lodgerUK_NE ptolemy

      Posted

      Ideas are good and I will be talking to our Trustees about this item and the others on a different thread. .
    • Anhaga
      Anhaga EileenH

      Posted

      I think there is a way to set up a website to accept donations in exchange for the booklet.  A young woman of my acquaintance is, unfortunately, very ill with cancer.  Her family has trouble handling associated costs, child care, for example, although her health care is coverd (yay Canada).  They set up a site where every once in a while you can order a button or a magnet designed by the woman herself, and make a donation of whatever amount desired.  It is done using PayPal, but credit cards also accepted.  I assume this is all done by her extended family, so it seems like once they got it up and running it doesn't require a whole lot to keep it going.  So there are probably similar systems used by other small organizations.
    • lodgerUK_NE
      lodgerUK_NE Anhaga

      Posted

      We are looking into it, but have found a way of dealing with payments in the meantime time.

      It just take an email to us first of all.

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