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Got down to 4.5mg Suddenly started a flare. Advice please

Posted , 14 users are following.

wenhaz
wenhaz

It’s taken me 4 & half years to get down from 30 to 4.5mg. Now I’m suddenly having a dreadful flare. I’m in so much pain. Tried just increasing to 10mg but I’m still in pain. I’ve only just got rid of my moonface. I really don’t want to go back there again. HELP ME PLEASE 

0 likes, 34 replies

34 Replies

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  • Anhaga
    Anhaga wenhaz

    Posted

    How long did you stay at 10?  It might take a few days to really kick in.  But if it doesn't resolve please see your doctor.  All the best.

  • Mrs_Hobbles
    Mrs_Hobbles wenhaz

    Posted

    I'm so sorry that you're going through this, it is so disheartening! It's difficult to know what to increase to, that will get at the inflammation and get rid of it. If you don't go to a high enough dose to get rid of the inflammation, then it'll build up again and you'll have to increase again. You might be better to go to 15mgs, you can do this for five days to a week and go straight back to where you were without any side effects and hopefully that'll sort it out for you. However 4.5 could be your tippng point and you may need to go back to the last dose you felt fine at and just stay there. If you are below 10mgs there's every chance the moon face won't come back!!

    • wenhaz
      wenhaz Mrs_Hobbles

      Posted

      My body coped well at 5mg and I was thrilled. To me that felt like the magic number. Then after about a month I decided to decrease again, very slowly... 4.5 on alternate days was ok, but then the flare started, and silly me chose to ignore it for almost 3 weeks. By then I could hardly move without pain.
    • constance.de
      constance.de wenhaz

      Posted

      I was ‘stuck’ on 5 mg for 6 months (it could have been longer)!  I am now down to 3 mg, going very very carefully, no more than 1/2 mg every 4 weeks.

      You’ll cope!  Just don’t be afraid of pred, a plump face is better than a lot of pain.

    • EileenH
      EileenH wenhaz

      Posted

      It is possible that you will need more than 10mg to clear out the accumultated inflammation before you feel comfortable. You could try a few days at even higher to see if that helps - and then work from there.

      There is also the question as to whether this flare is JUST due to having reduced a bit far to manage the daily dose of inflammation or whether it is a full blown flare due to an increase in the activity of the underlying autoimmune disorder and in that case you are likely be back where you were at the start until the activity calms down. It is something that happens to some people - the disease activity appears to fall away and that allows a reduction in the dose - and then suddenly it ramps up again for no apparent reason. I've had 2 or 3 flares like that over the years.

      It isn't unusual for people to have such a flare and find it more difficult to get under control than it was originally. I had been at 5mg for some time when the flare before last appeared. I had managed to get back to about 7mg by last summer when the next poked its head above the parapet. It is always a flare of myofascial pain syndrome that really manifests and usually if that is dealt with separately I get away with a lower pred dose for the PMR. Not so easy this time it seems - it is being very stubborn and while I feel pretty good at 9mg the rheumy is less happy!

    • wenhaz
      wenhaz constance.de

      Posted

      You are so right Constance. I’d be so careful, so patient, until I got to 4.5 then thought I could rush things....

      When I finally get down to 5 again, I definitely won’t rush things again 

  • snapperblue
    snapperblue wenhaz

    Posted

    Your story is similar to mine.  I can tell you what I did, but I can't really suggest what you should do!  I can only empathize with your frustration.

    When I got to 4 mg recently, I had a recurrence of the typical (for me) PMR symptoms and these lasted until I increased the prednisone stepwise to 20 mg.  Talk about discouraging!

    When there is a flare, I never know whether to delay the increases to see whether the first increase will work or to increase until the symptoms are under control to hurry to get rid of the inflammation.  I rapidly decreased from 20 mg to 10 mg but then slowed the decrease out of fear of a flare, perhaps more than necessary.  I have not had any resumption of symptoms, but I am only down to 8 mg.

    I have proceeded on the theory that it was more important to control the inflamation than it was to get off the prednisone as soon as possible.  However, my patience is wearing thin and my concern for the cumulative dose of prednisone I have taken is increasing. 

    There does not seem to be a good way out of this!  When I get to 5 mg, maybe I will stay there longer and reduce very very very very slowly.

    I can only counsel patience to both of us. All the best!

     

     

    • wenhaz
      wenhaz snapperblue

      Posted

      Thank you. I’m going to have to bite the bullet and increase some more. I’m beginning to think I’ll never get off pred. But I know that you’re right. Being pain free is the important thing xxx
    • snapperblue
      snapperblue wenhaz

      Posted

      The pain is related to inflammation, and chronic inflammation is at least a contributing factor to many medical problems, including heart attacks,  diabetes, and Alzheimers. In my opinion, doctors worry too much about the effects of prednisone (which are real and can be serious) and too little about the effects of chronic vascular inflammation.

      But there is no right answer to balancing these ill-effects.  We are caught between the devil and the deep blue sea.

      Remember, as Eileen says, the goal is not getting off prednisone- it is taking as little as possible while controlling the PMR. Patience!

  • Michdonn
    Michdonn wenhaz

    Posted

    wenhaz, I believe you have to increase till you start to get relief, stay at that dosage, till PMR pain free. Do not reduce if you have any PMR pain. When you are stable start a quick series of steps back down to the dosage you were at before the flare. Then stay at that level for sometime before starting your tapering again. Any number of things could have started the flare, key thing is not to let the inflammation get to far ahead of you, because you will end up taking more Pred. Good luck getting it under control. Think positive. ☺️
    • wenhaz
      wenhaz Michdonn

      Posted

      I stupidly ignored the start of the flare because I thought I could work through it.  Now it really has taken hold. I’ll never ignore my body again.  I’m going to try the 10mg for a week to see if it settles, if not I’ll increase to 15.  I really hate this illness. 😟

    • pauline36422
      pauline36422 Michdonn

      Posted

      michdonn   my problem is   i cannot   define  which is pmr pain   or just the regular old age pain   lol,   as after 6 years     after starting  pred   and at 76.  i am a bit unsure,
    • Michdonn
      Michdonn pauline36422

      Posted

      Pauline, try to listen to your body, you have a pain, did you do something that could have caused that pain. Is there a stiffness and then pain. Unfortunately there always seems to be some residual inflammation or the affects of the inflammation in the part of the body effected inflammation. For me it is my hands, I now have a more difficult time buttoning my shirt, but at first I could not button them at all. My legs and shoulders are fine, but if I go for a long walk or bike ride, is it a flare or from the activity. You must think, is the pain like the PMR pain. The decision at the point NSAID, Prednisone or nothing. PMR will not respond to NSAIDs or doing nothing. We have to learn to listen to our bodies. Good luck I hope that helps. Think positive and make the correct decision. ☺️
    • Anhaga
      Anhaga wenhaz

      Posted

      I can't say I "hate" PMR.  It's kind of like dragging a ball and chain around at times.  Not something I can hate, but something I have to accept and work out ways of managing in spite of.

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