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advice on dropping dosage

Posted , 7 users are following.

Amycakes
Amycakes

Hi All,

Just wondering , now I am on 21 mg preds, & thinking about dropping again soon, do you people drop every month/fortnight or more?

I know 1/2 would be sensible to drop everytime, but also do you wait till you have had a blood test on E.S.R. before considering dropping a dose.

My E.S.R. was 33 last time.

Just needed some clarification on this.

As if so I need to make an appointment with the doc.

I realise once you get below 20mg, it can become more difficult to drop.so any hints tips etc gratefully received.

Thanks for your time.

Amycakes.

0 likes, 30 replies

30 Replies

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  • BettyE
    BettyE

    Posted

    Mrs. G What a brilliant idea. Could we have a sticky thread on here for just that?. I have often felt a bit embarrassed to be repeating my own details but sometimes that's all you can do when a new sufferer joins. You can't expect them to trawl through months old posts but a thread with a title such as Contributors' Brief Histories might be a thought??[quote:0916568336][color=blue:0916568336]It would be nice if when someone posted you could just click on a very quick precis of their story !! [/color:0916568336][/quote:0916568336]

    [color=red:0916568336]Done it again. Forgot to put the quote at the start and it won't let me insert. Sorry.[/color:0916568336]

  • EmisModerator
    EmisModerator

    Posted

    Hi everyone,

    [quote:92ac4bc431]Could we have a sticky thread on here for just that?. ....... with a title such as Contributors' Brief Histories might be a thought[/quote:92ac4bc431]

    I have done this - please see http://experience.patient.co.uk/discussion_list.php?d=69 and PM me if any change required.

    As an afterthought I have also posted the PMR-GCA Northeast website as a sticky to direct users to rather than putting it in posts and these getting reported.

    Hope this helps.

    EMIS Moderator (1)

  • mrs_k
    mrs_k

    Posted

    EMIS Moderator 1

    Thank you for both of these innovations.

    One day I will get a round to writing the history of how we came about and guess what, quite a bit of it is down to this site. One day I might just meet up with the two Tyneside GPs.

  • BettyE
    BettyE

    Posted

    Many thanks Moderator 1. Will get busy with my precis.
  • Mrs_G
    Mrs_G

    Posted

    Thank you for that Moderator

    I cant have steroids brain still if Ive thought of a good idea !!

    Mrs G

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Mrs G - great idea!

    Moderator(1) - many thanks.!

    MrsO

  • Amycakes
    Amycakes

    Posted

    Well I have taken Eileen's advice & dropped from 21mg to 20, so far so good, though early days yet.

    Woke up this morning & felt ok, no treacle brain yet,eyes not so tired, , mood not bad, legs still the same , some backache when I do too much , but goes away when I rest, then I can do a bit more.

    Sun is shining & some ironing awaits, but what the heck it can wait a few more hours .

    Hope you are all having a better day.

    Spoke to my New Zealand family this morning & my granddaughter is getting excited ,\" only two more months Nana \" she said.Bless her , cant believe she was 3 when I last saw her & here she is coming up 11!!

    By the time she is here I hope to be on a much lower dosage, & looking & feeling a bit like my old self.

    Cheers Amycakes.

  • mrs_k
    mrs_k

    Posted

    It worked and I also used the password you sent me. Now I will try the Poly bit.

    Yippee.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Thank you for the e-mail notification, Alan(?). I have managed to enter the site earlier with ease and successfully (I believe) posted a reply to Snaggler. Looks like we're getting there.

    MrsO

  • Lee-Colorado
    Lee-Colorado Amycakes

    Posted

    Every person is differant. 

    1.  I recommend talking to your ruhmatoligist first.

    2.  If you are a visual person, the professional reference at the top of the page contains general recommendations for GCA or PMR and is a good place to look.

    3.  Follow Eileen's recommendations which are pasted in these notes file.

    4. Listen to your body, everybodys is differant.

    On a personal note, in my latest taper from 60 to 15mg, I never reduced faster than 2.5mg every 14 days with a 1 week rest after dropping 5mg.  I am now at 14 mg and reducing the meds 1 mg every 2 weeks. at the end of 6 weeks I take a CRP blood test.  If the CRP =< 5="" i will be="" prtmitted to="" drop to="" 10mgs,="" 1mg="" at="" a="" time.="" at="" the="" 10mg level="" the="" protocal="" changes. ="" gca="" and="" prm="" are="" never="" cured,="" they="" are="" just="" controlled.="" my="" dr="" from mayo="" clinic="" only="" uses="" crp="" and="" it="" must="" be="">< 5="" before i="" will="" be="" allowed="" to drop="" lower. ="" sed/esr="" should="" be="">< 11 so i believe that your are dropping too fast.  what is your body saying?

      11="" so="" i="" believe="" that="" your="" are="" dropping="" too="" fast. ="" what="" is="" your="" body="" saying?="">

     >

    • EileenH
      EileenH Lee-Colorado

      Posted

      cc - this discussion is way over a year old, many of the contributors have left the forum but if I remember rightly amycakes was well down on her pred dose. 
    • Amycakes
      Amycakes EileenH

      Posted

      Hi Eileen , Just caught this message.I am now off steroids for a few months now & feeling so much better.Havent been on here for sometime , my apologies.

      I dropped by 1 mg when ever I felt well enough .It took me 4 years to finally get off completely.

      I listened to my body as instructed & followed your advice .

      Thank you for all your help ,putting up with my moans .

      Thank you again .Cheers Amycakes.

       

    • EileenH
      EileenH Amycakes

      Posted

      Hi amycakes - lovely to hear from you and great news! 

      Given the messing about with this forum it is hardly surprising people got discouraged and don't visit! They had another go a few months ago - not as bad as the previous one though!

      In the nicest possible way - I hope you never need to drop in for advice again! ;-)

      Eileen

    • Amycakes
      Amycakes EileenH

      Posted

      Thank you Eileen & all the lovely friends I made on here.I hope I never have a relapse ,but if so I will only come back to this amazing site.Thank you all once again & I hope you all get off the steroids soon.xx Amycakes.

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