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Zero Prednisone Discussion

Posted , 53 users are following.

Emis_Moderator
Emis_Moderator

At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids. It can also be used for users still on pred to ask questions of users who have achieved zero pred. I have added information to the pinned discussion for PMR/GCA Resources https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 linking to this discussion.

11 likes, 216 replies

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  • pat38625
    pat38625 Emis_Moderator

    Posted

    Thank you - I think it's a brilliant idea and that some people are off steroids and some have gone into remission.  It gives me hope that some day it may be me possible and not just a dream.  
    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Me too Pat, I'm now on 8mgs, and hopefully I will one day get to zero too. How are you feeling today after a couple of days at the new dose? Regards, christina 
    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Hi Christina, thank you for asking how I am.  You being down to 8mgs is just fantastic.  I thought I was having a flare last night.  My thigh muscles were throbbing and I had to take 2 painkillers at 4.30am.  I really don't want to go back to 10mg, I am going with it but I have learned that I will not be reducing by 1mg next time, it will be .5 for 6 weeks.  How are you reducing?
    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Hi pat, hang on in there, this could simply be withdrawel, but if the pain etc, simply doesn't fade away over the course of 2 weeks and each day you get up the pain and discomfort is worse than the day before then just think that it might be a flare, but at least for the start of this reduction just clear the decks and take things that bit easier.

      yes, definately only reduce by .5 next reduction, you are now at the critical stage whereby I had a flare the first time I reduced from 9 to 8mgs. I went back up to 10and very slowly reduced down yo 8 which is where I am now.

      i sort of do Eileen's dead slow and almost stop method but only do 4 days old. So I do 1 day new, 4 days old

      1 day new, 3 days old,

      1 day new 2 days old then 2 weeks of 1 day new 1 day old, then I go onto all new there on in and I will stay on 8mgs for 6 weeks, then try 7.5. As you know I only  ever reduce by .5. I have noticed that now I have reached 8mgs I suffer from fatigue which is a symptom I never suffered from at the higher doses. My rheumatologist has said that as long as the fatigue remains sporadic then not to worry but if it becomes an issue to pop along to the GP.

      but you are doing really well, so listen to your body and don't rush things. All the best Pat, regards, christina 

    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Christina, thank you so much, it means a lot to me when someone takes the time to type and show me what to do or what they do.  I am in a place where nothing makes sense.  The DSAS method even when typed out I cannot get.  I have written it down in a wee book that I just keep for PMR dates and reductions.  Also my ESR and CRP results.  It will make sense some day.  At present I am in no pain, but even if I was I would still try to stay at 9mg and ride it out.  Thanks again Christina and Good Luck on your own journey.  
    • jacqui35798
      jacqui35798 pat38625

      Posted

      I am glad to know that I am not the only one out there with the reducing problem.

      I have made it down to 3 mg. and then rebounded by missing a dose. They only give me pred and nothing for pain.

      I deal with a lot of pain and know I should be on a higher dose, but I deal with it until it starts to dissipate a little and if it has been 4 weeks, I try to go down by 1/2 mg.

      I found out too many times the hard way that by reducing by more than 1/2 mg every 4 weeks will set me back and it will flare.

      I wish I knew if I stopped if the GCA would come on?

    • pat38625
      pat38625 jacqui35798

      Posted

      Hi Jacqui, just read your post. Pred should be reducing the pain, that is it's job. Maybe you have lowered your dose down too much too soon. There really is no need to be in so much pain. Would you not be better upping the dose a bit and then staying on that for a while, even over the Christmas period where there is always added stress, which does not help at all. Painkillers don't do a thing for PMR/GCA it's the steroids. I am no expert on this but it sounds to me that you are on too low of a dose. I have been on 2 mg from October 2017 and am hoping, just maybe trying to reduce after the New Year. If it doesn't work then I'll stay at my 2 mg.

      I hope that helps, I just know there is no need to be in so much pain. You need to stay on a dose that will manage the pain and that you are for the most part comfortable.

      I don't think anyone would know if GCA is going to come back. It's the luck of the draw, just take it day by day.

      Regards Pat

    • EileenH
      EileenH jacqui35798

      Posted

      I agree with pat - the pred is your painkiller, you need enough to manage it. The pain you are in is the signs of the inflammation that could become the GCA again if you force yourself to a lower dose. You are doing yourself no favours putting up with the pain - 3mg is a very low dose, if 5mg is enough to manage your pain then you are still at a very low dose, one with fewer risks than most painkillers, and you are more likely to have the inflammation (which has the potential to cause more damage to your arteries) under control.

    • RD_Swede
      RD_Swede EileenH

      Posted

      I took timeout a year when coming to 5 mg and could then easily continue with a slow method. I think it is no idea to hurry and be in pain

  • lodgerUK_NE
    lodgerUK_NE Emis_Moderator

    Posted

    GCA went into remission after 5 years.  Now into 4th year - I took my last steroid on 31 December.

    5 of us met on this site and were so pleased we met each other.  The end result was a National Charity (formed by 25 people)  which covers the England, Wales and NI.   Scottish Charity (the first in UK) and one which operates in the North East of England and which has overseas email members.  Links to these charities can all be found on this website and then you can find it a Support Group is near you.

    Why do I still contribute, because a lady in Scotland helped me through my first horrific six months.  Club Zero patients can help others on this journey that no-one every undertakes willingly.

    Thank You Moderator for all your help and assistance over the past 10 years.  

     

    • margaret22251
      margaret22251 lodgerUK_NE

      Posted

      thank you lodger/moderatoe/Eileen for all your valuable help, Any information can only benifit all us newbies , and it has been a tremendous help to me as i panic a lot, but have learned.

      I have reduced to 9mg from 10mg, stayed at 9 while on holiday, had a good 4 days but Friday has been up and dow, so i am going to wait another week before reducing to 8, as on holiday i came of my strict eating plan, so maybe i over idi it, walked everyday and felt ok, but friday did about 5 miles (with stops along the way).

      I have to have some bloods done this week as the hospital has requested them, and i have to tell my doctor that i have to have blood tested every 2 weeks, due to the aches and pains in my right temple.

      Once again thanks to all three of you for your help. Mags biggrin

    • linda17563
      linda17563 margaret22251

      Posted

      Glad your holiday went well.  Read the stories below, please don`t be too hasty in reducing....half a mg...every 6 weeks is plenty....you don`t want a flare...I have learned the hard way!
    • kathy67492
      kathy67492 lodgerUK_NE

      Posted

      It means so much to hear from people like you who struggled, continue to struggle and maybe went into remission! There are so many ups and downs that it is hard to imagine there being a light at the end f the tunnel!

      Thank you!

    • dea13
      dea13 lodgerUK_NE

      Posted

      Hi, I am happy to hear you are in remission after 5 years. I do have a few questions if I can. I have had PMR and GCA for 3 months, at 1st they just picked up the PMR but about 5 weeks into it I noticed myself the temple headaches, scalp and jaw aches, told my Dr so I went from 20mg Pred to 40 mg a day, going into my 5 week now on 40mg which have stopped the headaches etc so far. I have blood dne next week.

      What I wanted to know is do you have any eye change or problems from the GCA over those 5 years? And does the higher dose of Pred help get rid of it so you could go into remission? I know a lot depends on inflammation levels, and mine just don't seem to settle even on the 40mg at the moment. So we are looking for any infections I may have that is causing the infammation spikes. I had a breast scan and have been called back today for more testing as they found some calcifacation, so maybe that is causing inflammation>

      The thought of having eye problems is very scary for us all. I can handle the PMR but the GCA scares me...

      Many Thanks Dea

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