Depressed at having to increase dose of prednisolone

Posted , 9 users are following.

Hi everyone. I was diagnosed with PMR in April 2016 and started in a dose of ring which worked immediately. I'm the whole I have done pretty well, getting down to 4mg in May this year. However, since then I have felt increasingly tired and achey, by achey I mean that my whole body aches, almost as if I've just completed a 10 mile hike or something. I mentioned this to my GP when I saw him last week for my 2 month review and he said that my inflamation level had risen from 4 to 9 since my previous review and suggested going back to 10mg pred for a month and then slowly reduce again which he felt sure would do the trick.This I found depressing anyway as it's almost like starting again BUT so far the increased dose hasn't made the slightest bit of difference, which makes me think that it's not the PMR causing the symptoms. What does anyone else think? I don't want to continue with the increased dose if it's not the PMR and would it be ok to drop back to 4mg straight away as I've only been taking 10mg for just under a week?

0 likes, 10 replies

10 Replies

  • Posted

    fran2498, I was down to 7 mg and had a bad flare had to go to 30 mg to get any relief. Now down to 20 mg working my way down. But I will get there and will do so with a smile. 🙂 Hang in there it can be a bumpy road. Smile think of what it would be like without Predinisone. 🙂

  • Posted

    Hi Fran, if you have only been on 10mg for a week you can go back to your lower dose pretty quickly. My GP trebled my dose recently to 15mg which I found really depressing, it was because my CRP had risen from 12 to 132, I did not actually have any PMR symptoms as such so goodness knows what had caused it, but my GP was certain it was the PMR. 
  • Posted

    What is a dose of ring? A usual starting dose is 15 which is ok for some; others need a bit more. I was started on 30 whem I had PMR the first time, stayed there for 4 weeks, then 25 for 2 weeks, 20 for 11 days, 15 for 10 days, 12.5 ( by taking 15 and 10 alternate days )Then at 10 the pain came back so after that we juggled a bit but  got to zero three years later. This is not an untypical history. Once below 10 many find that to maintain a half normal life the dose does have to be adjusted and the reduction times vary considerably. I had to saty on 5 for three months.

     PMR is not like an infectious disease or a cold where you feel rotten for a time and then climb back to health in an smooth line so try not to feel depressed.

    What was your starting dose? It may be that you need to go back nearer to that to control the pain. I'm not qualified except by experience and reading that of others, but I don't think I'd be happy dropping from 10 to 4 in one go and would think best to sak your doctor first.

    • Posted

      Sorry, that should be ASK your doctor, not sak. Heaven forbid
  • Posted

    Hi, Fran.  I sympathize with your depression!  Even when we seem to be doing well, it is good to remember that PMR is not a walk in the park... unless it is a park with nasty things that  jump out of the bushes at you.

    You reduced to 3 mg very quickly, compared to most people. After reducing for over 2 years, I got stuck at 7.5 mg for several months.  In the past week, I have had a major flare- not just an increase in the lingering symptoms, but a return of really painful symptoms that had been gone since I started prednisone.  10 mg did not help much, and I am now trying 15 mg. I hope to go up for a short time then be able to reduce quickly. But I will do what needs to be done to control the inflammation. 

    I am not happy about this but, it turns out, PMR does not care if I am happy about it.

    If the return of your symptoms at 4 mg lasted very long, the inflammation may have become established and 10 mg may not be enough to clear it up. Are your new symptoms similar to the aches you had before?  I think I can distinguish PMR from other problems by the type of pain (of course, I may be wrong!)   

    If you decide to reduce to 4 mg again, I would not suggest doing it in one fell swoop!  Though you can reduce quickly if you have only been on 10 mg a week, I'd still do it in steps. There is no sense in asking for trouble. You could trigger a major flare that would take much longer to get under control. 

    Personally, in your situation (unless I had severe problems with prednisone or had a reason to believe the symptoms were not PMR-related), I'd take as much prednisone as necessary until the inflammation cleared, then reduce as fast as I could without symptoms getting worse.

    Much as we would like to bludgeon PMR into a pulp, its presence is not in our control.

    It is a frustrating disorder that hangs around as long as it wants. You are not alone- nobody likes this!  Patience and a rational use of prednisone seem to be the best policy.  All the best!

    • Posted

      Hi snapperblue, any idea what caused your flare, I contribute mine to a sore throat and head cold. My Rheumy disagrees, but we disagree, infact I would say we agreed to just disagree. Good luck reducing, try and keep a smile on your face!
    • Posted

      Hi, Michdonn- Thanks for the good wishes.  I have no idea what happened.  No stress, no extra activity, no travel, no colds, nothing. However, the morning soreness has been gradually increasing over a month or more, which should have been a clue!  In retrospect, I realize that I chose to ignore this and I tried to bluff my way through, thinking it would go away. 

      I had tried a slow reduction a couple of times a few months ago without success, so I'd decided to stay at 7.5 for a good long time to let things stabilize.

      Ha!  This is the thanks I get for my kind and sympatheitc approach to the gods of PMR. They are mysterious, if not vengeful gods!

      I have only been on 15 mg for 2 days and the pain is greatly reduced. So I hope this will be a passing, barely noticeable blip in my journey through and out of The Land of PMR.  I can't complain because I have been almost free of symptoms most of the time I have spent wandering in this hostile land.  Like you, I am enormously grateful for prednisone. 

      Cheerio!  Snap

       

    • Posted

      snapperblue, I will not reduce if I have any PMR pain at all. That is why I was on 30 mg for about 6 weeks, reducing slowly now and will be conservative on my way down.

      Good luck on your journey! Predisone allows us to live almost normal life! 🙂

  • Posted

    You should be ok to drop back to 4mgs if it's been 5 days or less, generally after that you'd feel withdrawals. I do think tho that you should go up to 15 to see if it makes a difference to your achiness, again you can drop to your previous dose in 5 days with out withdrawal symptoms! Hope this helps.

  • Posted

    Give it a chance - unfortunately when you overshoot the "right" lowest dose it can be more difficult to get the pain and stiffness under control again. You may even need a bit more - as the others have described.

    In the end though - it is your decision whether you stay where you are, go up or go back to where you were but allowing PMR to flare up to the state you were in originally isn't a good way to go in the long term. It was the best part of 4 years before I was able to get below 9mg. I have had PMR for 13 years, probably without any total remission in that time, certainly not in the first 5 years, but in the last 8 years I have had 3 major flares of the symptoms. Never because I overshot the "right" dose except accidentally because i had a bad batch of tablets.

    It is suspected the activity of the underlying cause of the symptoms we call PMR waxes and wanes - it does in many autoimmune disorders leading to short lived flares where a short period of pred is usually used to get the inflammation under control again until an adjustment of the usual medication is enough. But for us, pred IS our usual medication so we are always at one level or another of it.

    Basically though there is no virtue on being on too little pred to manage the symptoms - there are no benefits to outweigh the downsides. 

    But if you really want to - there is no reason not to drop back to 4mg rather than tapering. If it were me though - I might try a couple of days of 15mg first to see if the flare is due to the underlying disease activity being higher than 10mg can deal with. It is your choice.

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