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Flare up?

Posted , 5 users are following.

DebbieHurts
DebbieHurts

Hi all, I've been trying to follow the dr's orders to reduce my prednisone.  In Aug. I went from 10 to 9 and after a few days got used to it.  But in Sept when I tried 8, I started having pain flare-ups.  I tried to keep at it to see if I got used to it, but everything got worse and worse.  So in desperation I went back to 10.  Now I've been a week on 10 and the flare up won't subside.  I'm in so much pain in my legs, hips, arms, shoulders.  Could it be something else?  Isn't there anything that helps beside pred.?

0 likes, 11 replies

11 Replies

  • steve_1
    steve_1 DebbieHurts

    Posted

    The same thing happened to me going from 10 to 9 and I had to go back to 12 1/2 and start again from there. Then I went 11, 10, 9 one day 10 the next for 2 weeks then 9 for another 2 weeks now I,m doing 8 and 9 the same way, Seems to work for me.
  • EileenH
    EileenH DebbieHurts

    Posted

    The usual recommendation from good PMR doctors is to take a dose 5mg above where the problem started for several days - the inflammation is there are needs to be cleared out. It is also quite common for people to find that the pred isn't as effective if you start yoyo-ing the dose. The doctors' desperation for patients to reduce the pred often causes this - reducing too far or too fast is the most common cause of a flare and often leads to having to go back to a higher dose to control it so you lose all the benefit of the reduction. 

    We've been saying for ages that pain that starts immediately you reduce the dose and then improves after a few days is probably steroid withdrawal whereas pain that starts after some days and then gets worse is more likely to be the inflammation flaring up. If say 12.5mg works you could probably take that for a week and then reduce quite quickly back to 10. 

    What sort of reduction do you use? Did you go from 10 to 9 overnight so to speak? Have you seen this reduction scheme that spreads the 1mg reduction over about 4 weeks and has worked for a lot of people?

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

    it is in posts 4 and 5 of the thread.

    However - if the underlying autoimmune cause of the PMR symptoms is still active you will reach a point where you have found the lowest dose that controls the inflammation it causes. If that is still active no reduction will let you relentlessly reduce to zero. 

    If trying a higher dose doesn't control the flare fairly quickly then your doctor needs a rethink - sometimes going to 15 or 20 will do the trick and then you can reduce again, in reasonably quick steps probably down to 12.5mg. But in some people it turns out not to have been plain pred-responsive PMR after all. For that sort of PMR there is nothing else that works, no. If on the other hand it turns out to be late onset rheumatoid arthritis there are others options.

  • jenny_sussex
    jenny_sussex DebbieHurts

    Posted

    Hi Debbie

    Just to write in support of what else is said, I also went on a silly reduction at consultant instruction - from 10 to 2mg in a very few weeks. I imploded at 2, went back to 5 but had to go back up to 10 to get any effect. I stayed there for 6 weeks and then reduced to 9, but after 7 days I had a major flare and was in bed for 2 days.

    My pain levels are not as bad as many report but I don't feel as well since the ill advised reductions - very tired and lots of hot flushes.

    I read most of the posts but was daft enough to not take the advice!

    My rheumatology consultant didn't think I had pmr - I'll be interested to know what he thinks next time I see him (my appt is 9 months after the last time).

    Please Debbie - take the advice of Eileen and the others with experience and don't make my mistakes.

    All the best

    Jen

    • EileenH
      EileenH jenny_sussex

      Posted

      What is VERY interesting is that on one of the other forums we have had a post from a former GP - who now has PMR herself. She was asking the question: Is it so much worse to be at 9mg that works than 8mg that doesn't really stop the pain? Finding out what it is like for us has brought about a complete reversal of the "you must get off pred asap and at all costs" concept.

      I've asked her to come back out of retirement...

  • DebbieHurts
    DebbieHurts

    Posted

    Thanks all for your support.  I will try the reduction plan you have.  What do drs think of it, if any of you have shown it to them?  It is early am here, and I took my pred and some pain pill about an hour ago, went back to bed, and woke up aching like the dickens in every part of me.  Maybe I will take 2 more ml of the pred to bring it up to 12?
    • EileenH
      EileenH DebbieHurts

      Posted

      Another reduction scheme is also available in the form of an excel spreadsheet (I think) so  you can mark off the days on it but there is really no difference in the principle. This other one is been used by a consultant in the north of England for his patients and he has already said in a tone of surprise "It works!". My own GP here in Italy who worked in rheumatology before becoming a GP seems to think even the rate I go at may be too fast! We've discussed it with various doctors involved in research and they all see the concept and are waiting to see how it goes.

      Are you sure you haven't got something else going on? A cold, urinary tract or chest infection? I had got down to 3mg with no apparent problems over a few weeks but a really bad cold a few weeks ago seems to be having an effect and I have had to go back up a bit to prevent bicep cramp when typing. It's a bit difficult to tell at the moment - I also carried a few heavy bags that week too as we went away on holiday and spent 4 days at 2000m where I was walking up and down 3 flights of stairs a few times a day. That didn't bother me at all and I was really pleased - it's my upper arms and nothing else! Strange...

  • Oregonjohn-UK
    Oregonjohn-UK DebbieHurts

    Posted

    Just hang in there  - it may be wise to stay at 10 for a week or two and then follow the much spread out reduction plan as lised on this forum - drop on one day a week to the lower and the rest of the week at higher and then second week two days (say Monday and Wednesday) at the lower the other higher and so on until you are completely on lower - Hope this makes sense
  • DebbieHurts
    DebbieHurts

    Posted

    Thanks again.  Eileen, I was hurting before, but I do believe Wed. I sat wrong in my work with the children at school.  If I sit leaing forward, for some reason, the next day my hips are in great pain and my arms, too, from resting on the table.  I usually hurt a day afterwards, but this time it has been much worse,lasting forever.  OregonJ, I took 12 today, but you are probably right. 

    Say, do any you know hw to tturn off the ads

    • EileenH
      EileenH DebbieHurts

      Posted

      You've probably insulted your back muscles a bit much! I ended up in hospital with all my back muscles in spasm after leaning forwards to do my toenails! It took a day or two to really cook it but I finally got out of bed in the early morning to go to the bathroom, got back into bed and then realised I couldn't move! After a big dose of ibuprofen and waiting for a couple of hours I managed to creep to the car and my husband took me into A&E while he went to get a blood test. The first option for dealing with it stopped the pain in the short term but triggered an atrial fibrillation episode (rare drug reaction) but it was then handed over to the slow but steady techniques! Cortisone shots and a lot of manual mobilisation has done the trick - took a while but it is looking good now :-)

      The ads - get a good security package with a good adblocker. This computer has Adblockplus with Chrome. Ads? What ads!!!!!!

    • DebbieHurts
      DebbieHurts EileenH

      Posted

      Oo, ow, that sounds painful.  I can see that happening to me, too, but I'm still able to get my foot up onto my thigh to cut nails.  I'm not sure, but I think constipation might be another problem that causes the hip pain.  
    • EileenH
      EileenH DebbieHurts

      Posted

      If you ar so constipated it is causing pain - it needs sorting out! Are you taking any codeine-containing painkillers? That will cause constipation and probably won't help a lot with PMR pain. Codeine should always be handed along with advice on preventing constipation. Is it? Is it heck!
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