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Is it ok to drop 5mg of pred was on 20mg for 10 weeks

Posted , 9 users are following.

pat38625
pat38625

Hi everyone, I had my first appointment today since diagnosis of PMR  in November and am currently on 20mg pred.  Was at endocrinology today and after taking some details and examination I have been referred to Reumatologist (which should have been in the first place).  Consultant I seen today suggested I go down from 20mg to 15mg but to work it out with my gp (who I have an appointment tomorrow afternoon) to tweak it up or down just to see how things go until I see Reumy.  Is reduction of 5mg too much at start.  I know everyone is different.  I shall just have to wait and see how I fair but am going to ask my gp tomorrow to prescribe me 1mgs of pred, so I can manage not to drastically.  Also gound out today that ESR rates also goes by age it does not have to be below 10.  Apparantly 19 is fine for my age, only turned 60.  Any enlightment will be welcome.  Also a thanks in advance.

2 likes, 30 replies

30 Replies

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  • shawn99
    shawn99 pat38625

    Posted

    Hello Pat,

    I am the same age, and like you I was on 20 mg of prednisone and wanted to reduce ASAP. I tried to drop 5 mg in one shot and it "didn't" work. I had a flare up and had to start over again.

    I then went to a 1 mg reduction in every two weeks down to 15 mg and was successful.

    Getting a further reduction from 15 mg at that rate did not work, and another flare up occurred. So I then used the posted reduction plan that I believe Eileen had submitted on this blog and things are going much better. Saying all that, everyone is different, so what works for me might not work for you.

    I am continually having bloodwork done (once a month) which helps to some degree in determining the amount of prednisone I need and the success of the reduction program.

    My specialist is very understanding and suggests new ideas along with listening to my queries and proposals for reducing medications.

    I hope your Doctor listens and you are able to move forward.

    Shawn

    • pat38625
      pat38625 shawn99

      Posted

      Shawn thank you so much for sharing all your information with me.  It makes me feel so much better.  I haven't even had my first Reumy appointment yet and God only know when that will be.  It was Consultant in Endo that suggested the reduction and she also said work with your gp until you find a balance.

      I know everyone is different but as Mrs O says to drop by 5mgs is a big drop and you have also said it didn't work for you.  I am too long in the tooth now to be messing with meds up and down, I think the people on this forum are better when giving advice/support and I would listen to them first but also take control myself and see what works for me.  Thanks again much appreciated.

    • EileenH
      EileenH pat38625

      Posted

      Everything the endo would use pred for would use a 5mg drop, often 10mg is used! The first time I was on pred it was 2 weeks each of 15/10/5 - and it was OK at the time, I was fine at 10mg, not bad at 5mg but 24 hours after stopping I was in agony (further proof it was PMR!). I then had a few months at 15mg and then tried 2.5mg drops which were ok, but I repeatedly got stopped at 10mg and even 1mg drops overnight were too much. It is the nature of the PMR and the length of time we are on pred. When I used the slow reductions for the last couple of years I have got to 4mg with no problems at all.

      The whole thing, explaining the background to the plan MrsO has posted is in posts 5 or 6 of the thread this link will take you to.

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    • pat38625
      pat38625 EileenH

      Posted

      It was a Registrar I seen yesterday at Endo, she took down all my details, did an examination and then went to the see the Consultant and she came in, I know her from my time at Endo (was discharged last June) then she came into the room to speak with me and suggested to drop by 5mg but work with my gp and not to be in pain.  

      I know we are all different but I would prefer to listen to yourself and others because you all have the experience below your belt and drs differ all the time which doesn't help,  It just becomes more confusing.  That's the last thing I need is more confusion.  

  • ann57025
    ann57025 pat38625

    Posted

    Please can I have a copy of the slow reduction plan that you are talking about, something else to go armed with to the GP

    cheers 

    Ann G

    • MrsO-UK_Surrey
      MrsO-UK_Surrey ann57025

      Posted

      Ann

      A few of us have tried/are trying very very slow reduction methods.  I didn't have need of such a slow method.....until I reached 5mg!  I had to increase back from 3mg to 10mg and by the time I reached back down to 5mg I had read of a Swedish gentleman's (Ragnar) slow tapering regime from 5mg when he had also found it impossible to reduce below 5mg.  I followed his regime but at even more of a snail's pace.  IT WORKED!  I came off steroids just over 2 years ago.

      Eileen is having success following a similar pattern and her plan can be found on the home page of this discussion group, under the pinned threads.  For ease, I copy it below:

      1 day new dose, 6 days old dose

      1 day new dose, 5 days old dose

      1 day new dose, 4 days old dose

      1 day new dose, 3 days old dose

      1 day new dose, 2 days old dose

      1 day new dose, 1 day old dose

      1 day old dose, 2 days new dose

      1 day old dose, 3 days new dose

      1 day old dose, 4 days new dose

      1 day old dose, 5 days new dose

      1 day old dose, 6 days new dose

      By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old"

    • pat38625
      pat38625 ann57025

      Posted

      Ann I think Mrs. O has put it on line in this forum.  It's great that we can help and support each other.  Without this forum I don't know where I would be, probably listening to drs and believing what they are saying.  
    • erika59785
      erika59785 pat38625

      Posted

      Right on.....don't believe everything the drs. are saying.....they don't FEEL your pain, and sometimes do not have full knowledge of PMR, especially unfortunately Rheumatologists  They want you to lower too drastically.  This forum has lots of fellow sufferers and they have valuable advise.  I would be lost without them.
    • pat38625
      pat38625 erika59785

      Posted

      Thank you Erika, was at my drs yesterday and I am only reducing by 2.5 mg so have started 17.5mg today instead of reducing 5mg which would be 15mg too big of a reduction.  So here's hoping.  I agree I would also be lost without this forum, so much valuable information more so than gps and consultants.

      Pat

    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Hello pat, sorry I didn't post you the details of the reduction method but I was out of the house all day yesterday and when I returned and logged on I saw that other members had posted all the details. 

      Also, I'm so glad that the more experienced members warned you off such a large reduction after I had said that it probably would be fine if you did! I can't believe I could have been so irresponsible. I'm so pleased you didn't take my advise because if you had of had a flare up I could never have forgiven myself. So good luck with all your future reductions, I on the other hand will stick to what I am good at which is knitting mittens and baking cup cakes! Regards, christina

       

    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Hello Christina, don't be too hard on yourself.  We all make mistakes so don't you be worrying.  I am only starting my reduction today, 17.5mg so fingers crossed.  Thank you for your input.  I value all comments and at the end of the day I make up my own mind, so it would never be your responsibilty or in fact anyone elses.  

      I like knitting and have so many unfinished projects but will get back to it sometime.  You have a good day.

      Pat

    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Thanks pat. We'll have to compare knitting patterns etc, when you're feeling better. All the best, christina
    • pat38625
      pat38625 tina-uk_cwall

      Posted

      No problem Christina, I cannot knit without a pattern lol  I have to follow everything a pattern says, I do want to learn to crochet though.  You have a good day.

      Pat

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