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The Game of Steroids

Posted , 6 users are following.

davidmelville
davidmelville

Don't misunderstand my title . . . it's no joke. It's life-changing, challenging and one big, often misunderstood battle.

My story is recorded in various posts over the last couple of years. Yes, I'm two and a half years in. Started at 30mg and worked down to 7.5mg. 

I saw the 'Rhummy' a few weeks ago and my blood test showed 3 (whatever's) so it is pronounced that the Polymyalgia rheumatica [PMR] has probably gone and I'm signed off and returned to my GP. I'm also told I seem to know what am doing with managing the Prednisolone and unless I go over 10mg the 'Rhummy' was happy to leave me to my own devices.

But having had to increase to 10mg in the lead up to a very traumatic Chrustmas and onslaught of personal pressure I got down again to 8.5mg. But the old symptoms are returning, so worked on the principle that it was most likely steroid withdrawal I perseved, covering myself with pain killers. But now some 14 days on thise symptoms still stay and I want to go back to 10mg and get some 'peace'. But if I do I know I have to come down again.

The ' Rhummy' has said he is not bothered if I stay on 10 (I assume forever!) but that's not the best answer unless he knows something I dont.

i suppose my question is "Do people stay on 10mg for really long periods"?

Thanks everyone for being so great!

2 likes, 20 replies

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  • EileenH
    EileenH davidmelville

    Posted

    What do you call really long periods?

    First of all - if you were still taking 7.5mg of pred there is no way in hell the rheumy could say the PMR has "gone" on the basis of the blood test, probably the ESR, being low. The ESR being low signifies merely there is no inflammation present and since you are taking 7.5mg the pred is no doubt achieving that. I can only imagine that the rheumy is of the persuasion that 7.5mg is a physiological dose and isn't actually doing anything - but that isn't true either.

    I spent a good 3 years on doses of above 10mg, I never succeeded in getting below 9mg for whatever reason. I eventually developed the "dead slow and nearly stop" (DSANS) reduction based on the idea used by a Swedish gentleman to get below 3mg but I used it from the start when I was switched to a new version of prednisone after totally hellish experiences on medrol. Using it I got to 3mg but decided 3mg was just a ted too far just yet and have returned to 4mg - I feel even better on 5mg, I know that.

    If you use the DSANS approach the chances of it being steroid withdrawal are negligible, any return of pain is almost certainly PMR flaring. It has worked for a lot of people, enabling them to get lower than ever before.

    I've had PMR for well over 10 years - it is still there. Or maybe it has been away and come back without me knowing. Whatever - a lower pred dose than where I am now makes my right deltoid muscle ache so, whatever is causing it, I'm happy here. So I had PMR for 5 years with no pred. Then had a good 4 years above 9mg, quite a bit around 15mg - I haven't disintegrated, imploded, or anything else. I put on a lot of weight with Medrol, I have lost it all and a bit more while on the current version of prednisone.

    There are doctors who suspect that it is a bit more than just inflammation, that there is a degree of adrenal malfunction underlying PMR. I don't know of any proof of that and it is an older concept. But the way to manage it is a low dose of pred as one dose a day. Maybe he thinks that?

    But 2 1/2 years of pred, having managed to get under 10mg during that, is not really horrendous. You have a rheumy that is happy with you at 10mg and isn't telling you to get off pred NOW. Go back to 10mg, get things properly under control, and then try the DSANS method of reduction and see what happens.

    • davidmelville
      davidmelville EileenH

      Posted

      Bless you, I was hoping you saw this as over my time I have watched and learnt.

      i shall go back to 10mg and watch with interest what it does? I'll give myself a month to really balance and start 'living' again and then try DSANS . . . it would be interesting to see what format you used  to better understand things..

      Thank you you so much.

       

    • Karyjo
      Karyjo EileenH

      Posted

      Hi Eileen,  about new version of prednisone, could you give me the name of this medication ?  Thank you and have a nice day
    • EileenH
      EileenH Karyjo

      Posted

      In the UK and Europe it is called Lodotra and in the US it is called Rayos. It is approved for RA in the UK and RA and PMR in Europe and the US. It is a delayed or modified release formulation which you take at 10pm either within 3 hours of your evening meal or with a snack if you eat earlier. I think it is brilliant - but most doctors say "what????". It is far more expensive than ordinary forms of corticosteroid which is another problem.
    • lodgerUK_NE
      lodgerUK_NE davidmelville

      Posted

      Semd a pm with your email address for t'other version.

      Anyone else can do the same.

  • erika59785
    erika59785 davidmelville

    Posted

    Hi David,

    I am 6 months into my PMR diagnosis by my GP.  Luckily he is leaving it up to me to reduce sufficiently after flare ups.  He gave me a schedule of 30 mg for 5 days and lowering by 5 mg after that until I reach 15 and then much more slowly until I reach 10 mg and STAY THERE FOR LIFE.

    It sounds good, but I know it will be dificult to ever reach 10 mg.....because I have tried and would have flare ups on 15 mg.  Sadly, I still have a LONG WAY to go....

    Erika

    • davidmelville
      davidmelville erika59785

      Posted

      Amazing that stay on 10 for life is advocated by your GP, but not much different to the 'Rhummy ' saying I'm happy as long as you don't go over 10.

      i just want be happy whatever the dose . . . I've a life to live and I wish to enjoy it, NOW. Tomorrow is in God's hands anyway.

    • EileenH
      EileenH davidmelville

      Posted

      Quite - why worry about a side effect like a broken hip in 10 years if not taking pred means being in a wheelchair now? If you are in pain and immobile that is an even greater risk factor for osteoporosis and a broken hip, especially when you are so unsteady on your feet because your muscles have deteriorated from being unable to exercise that you fall. 

      It's all swings and roundabouts...

    • erika59785
      erika59785 davidmelville

      Posted

      You are right, tomorrow is in God's hands.....for now we need to take the right amount of prednisone which makes us as pain free as possible,  and give us a comfortable existence in our life.
  • Karyjo
    Karyjo davidmelville

    Posted

    Weaning from prednisone is not easy at all and withdrawal must be individualized Each person will react differently. I lived one week from hell when my endo would not understand that from 15 mg, I could not cut 2.5 mg / month. I was afraid of having to go to the emergency because physically and psychologically it was not going at all. I decide to take my initial dose and everything is back in order. I understood the need to respect me in my withdrawal. My GP told me recently that it is obvious to avoid prednisone, but in some situations, it was necessary to take. He also told me that some people with polymyalgia need a dose of 5 mg for the rest of their life. I am very agree with Eileen that weaning should be done very slowly and especially to respect what our bodies can take.  For me it is the only way to tapper prednisone.  
    • davidmelville
      davidmelville Karyjo

      Posted

      It certainly something not be messed with BUT I don't and never did agree with reduction for the sack of it. I personally can't see the point in topping up on pain killers just to save 1mg of Prednisolone.
    • EileenH
      EileenH Karyjo

      Posted

      Have you seen the slow reduction scheme in posts 5 and 6 of this thread?

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

      It smooths the drop even more - and some people have used it to be able to reduce in 2.5mg drops when they have a form of pred that cannot be cut. It has helped even the people whose bodies protest at 1mg drops from one day to the next at higher doses. I started to use it from 15mg - I was very sensitive to reducing pred.

  • carol16456
    carol16456 davidmelville

    Posted

    I was so pleased with myself the other day ,when I came to an agreement with my doctor to reduce .5 mg of pred at a time as 1mg at time was causing relapse but three mornings in 12.5 I feel as though I have done a round with Mike Tyson and carrying a yoke arround my neck full of milk on each side (how those maids a milking in the old did it  ,I can only imagine there's must have been a good farmer boy set in their sites ) but do wonder how long a withdrawal from a drop in pred lasts before you drop again ? I don't like milk or unfortunately have any farmer boys in my sites .is there an average time of withdrawal ? 
    • EileenH
      EileenH carol16456

      Posted

      Is this pain that started overnight practically as soon as you dropped the dose? If so, it is probably steroid withdrawal and that should improve over the next several days. If it steadily gets worse then it is possibly a flare because the dose is simply too low.

      The slow reduction tackles this by just using one day of the new lower dose at a time and then returning to the old dose where you know you are OK. Then you reduce the time between each attempt at the new lower dose. I find for the first 3 individual days of lower dose I feel peculiar - that's the only way I can express it. But the next day I am back where I know it was fine for the next few days and I feel fine. After those 3 single days of feeling strange my body admits it is a fair enough deal and stops protesting!

      You'll find it all written out here in posts 5 and 6 of this thread.

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

    • davidmelville
      davidmelville carol16456

      Posted

      Hi carol16456 nobody has ever asked me a question before, quite taken me aback! As I understand it the withdrawal symptoms kick in straight away but flare up takes a few days to start showing itself and dies so slowly.

      my own experience is that I 'sort' of agree but the 'sort' part is that above 10mg a day I never waited to see and if I felt stiff and in pain I went back up immediately. It is only as I get below 10mg a day that i 'have' tried to ride it out or cover it with pain killers.

      Now, to be honest having tried it I'm not going to bother again . . I can see no sense in living on the edge of Polymyalgia rheumatica [PMR]. For me I see no point in pain and stiffness if another my will give me a better quality of life. Today's wobble was about allowing doubt to creep in . . . But I'm re targeted, quality, comfort, peace and a life come first!

      but on a cheeky level, a milkmaid or two would put a spring in my step!

      i know there is a much better technical answer and I'm sure it's being typed even now . . . . . .

    • carol16456
      carol16456 EileenH

      Posted

      It started lunch time yesterday when I dropped the dose first thing in the morning .Today took again at breakfast same dose as yesterday then pain starts up again ,although did have stiffness in neck when I awoke ,once up it appears to ease of after moving round but early pm ish I am back to square 1 again .Thanks for your input 
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