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💥 PMR, prednisone, relaps

Posted , 5 users are following.

kathy67492
kathy67492

Have had PMR for almost 18 mos. Gone from 10 mg down to 7 mg using the Bristol regimen. A few weeks ago I had a bad taper down to 6 mg...lasted 2-1/2 weeks..went back up to 7 mg on the advice of this forum (Thank you!). This past week has been stressful and I am more than fatigued. Sore in all the PMR spots, weight of my body too heavy to sleep at night, night sweats. Could I have flu, complicated by PMR?  Or could I possibly relapse back to the beginning? I have been eating properly.  Any suggestions are appreciated.

2 likes, 14 replies

14 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey kathy67492

    Posted

    Kathy, it is always possible for some sort of virus or infection to be the culprit rather than a relapse in PMR.  If you are someone who had raised blood test markers of inflammation at diagnosis (ESR and CRP), then having these tests repeated might provide an answer.  As it's now the weekend it will be a couple of days before you can arrange such a test, so why not increase your steroid dose to 10mg for the next few days - if you feel a swift and marked improvement in your pain/sweats/fatigue then you will have your answer.  From your previous experience of having to increase from 6 to 7mg, it sounds as though somewhere between 10 and 7mg is your maintenance dose for now, and once you have found that dose and remained there for a good month, then perhaps you will find it easier to reduce in just half mg decrements in the future.
    • kathy67492
      kathy67492 MrsO-UK_Surrey

      Posted

      I did have very high numbers, ESR and C-Reactive Protein, in the beginning. Those numbers have come down, but I have not have those tests in a while. You are right...I am definitely in the 1/2 mg tapering arena!

      Thank you!

  • EileenH
    EileenH kathy67492

    Posted

    It may be you need more than just going back to 7mg to manage the flare you caused by going down too far. Most doctors suggest adding 5mg for a week to get the inflammation under control so MrsO's suggestion of going back to 10mg is a very good one.

    To some extent it depends how fast you were reducing, how long you remained at each dose having reduced. You aren't reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms as well as they were managed at higher doses. The starting dose is enough to deal with the inflammation in most cases - higher than you really need. Once the existing inflammation is dealt with you have to find the lower "maintenance" dose. If you were going down 1mg a month it may be that you really need 8mg but in the time you were reducing to 7mg and then 6mg the inflammation has been creeping back up and now it is enough to notice. 7mg is a common sticking point - not least because that is about the dose where your body has to start producing cortisol itself again. Add in stress and the effect is to really prod the PMR awake again.

    • kathy67492
      kathy67492 EileenH

      Posted

      Thank you. Took 8 mg a couple weeks f hours ago (6 a.m. here)...no change. Will now take 2 mg more and see how I feel. What would I do without the forum!😊
    • EileenH
      EileenH kathy67492

      Posted

      It might take a few days - flares that have set in can be resistant. REST!!!!!!!
    • kathy67492
      kathy67492 EileenH

      Posted

      Ended up taking 10 mg. How many days should I take the 10 mg?....then go right back to 7 mg? The major brain fog makes it difficult to remember the "rules" of getting in trouble while tapering....and I didnt know it could get so bad. I will rest. Thank you!
    • kathy67492
      kathy67492 EileenH

      Posted

      Forgot to mention...after taking the full 10 mg, felt better within the hour, but still have a sore, sore neck...
    • MrsO-UK_Surrey
      MrsO-UK_Surrey kathy67492

      Posted

      Kathy, as Eileen has said, the increase to 10mg could take a few days to really get things under control, especially if the inflammation has really taken hold.  If you experience further improvement in the next few days, then you need to remain there for a couple of weeks before attempting any reduction.  Meanwhile apply some heat to your neck - I found an electric heat pad very comforting when my neck pain was bad, and on some occasions had to resort to a surgical collar for a couple of days.
    • kathy67492
      kathy67492 MrsO-UK_Surrey

      Posted

      so if I stay on 10 mg for a couple of weeks,  do I then drop to 9....or go right back to 7 where I had been stable?  Thank you!
    • EileenH
      EileenH kathy67492

      Posted

      How long had you been on 7mg? As I said, if you reduced from 8 to 7 and jsut spent maybe a month at 7 before trying the 6 it could be 8mg or 7.5mg that is the dose you would really be stable at - if the 7mg was borderline it would take some time to get to a level of inflammation that registered as symptoms.

      I would go via 8mg and spend a week or so at each dose to minimise the possibility of withdrawal pain.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Kathy, because of the extent of your inflammation/severity of your symptoms, and also because around the 7.5mg is the dose that equates to your normal levels of cortisol when well (pre-PMR) - often a sticking point for many whilst the body catches up - if it was me I would just reduce by 1mg to 9mg in the first instance.  Slowly but surely - better to ensure that any inflammation is under control, if only to reduce the chance of GCA getting in the back door.   
    • kathy67492
      kathy67492 EileenH

      Posted

      I had been at 7 mg for 6 weeks, all fine. Went to 6 mg (too soon!) and lasted 2-1/2 weeks, but wasnt totally miserable, just achy and fatigued. Went back to 7 mg and here I am 2-1/2 weeks later with a major, major flare. Today is my second day on 10 mg...feeling a lot better already. Going from 10 to 7 seemed pretty smooth; I had been on 10 mg for so long...so I just co ti ued tapering according to the calendar, as if the PMR would play along!
    • kathy67492
      kathy67492 MrsO-UK_Surrey

      Posted

      For some reason I did not remember that GCA can occur at any time. That is reason enough to be cautious. I am so anxious to get off the prednisone, so when I am doing well I want to taper...forgetting that the inflammation is bad for you too!  Believe it or not, I save the great advice from this forum...but when I have brain fog I cant find anything! Appreciate the patience of everyone on the forum.
    • EileenH
      EileenH kathy67492

      Posted

      Yes - I think I would go back to 7mg very gently because it must be absolutely your borderline at the moment. Make sure you get it all cleared out before you start back down though - or you run the risk of it happening again and you really don't want that. And as I have said somewhere else today, it is possible that there has been a bit of increase in the autoimmune part of PMR. It isn't known whether it comes and goes, wavers up and down in waves or just stays about the same. If it is a case of it goes up and down like waves there will be times where you are reducing and it coincides with a down phase. Then when it goes up again the dose you are on isn't quite enough and you get achy again. I also find the weather makes a major difference. I felt pretty good last week in hot dry conditions. Then a thunder front came along and I could feel the difference. It's rubbish again today - but I had a Bowen session yesterday so I'm feeling not too bad!
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