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Decreasing prednisone and now my buttocks and thighs ache

Posted , 6 users are following.

rrobinson75
rrobinson75

I have had pmr for two years and have been doing well. I have had a few flairs during that time which have effected my shoulders only.  I am in the process (dead slow) of reducing from 6 mg to 5.5mg.  Out of the blue, my groin and buttock area are aching.  I have tried to ignore it but it is constant for the last week.  I am wondering if I should increase my prednisone and by how much and for how long before I start to decrease again.  Any suggestions would be appreciated. 

0 likes, 12 replies

12 Replies

  • mark9992
    mark9992 rrobinson75

    Posted

    I may not have anything helpful to add except to note that you and I are EXACTLY in the same place.  I've had PMR for just over 1.5 years.  I'm also using DSNS to reduce from 6.0 to 5.5mg.  I'm just about half way through the schedule.  I also have shoulder pain, but it seems to be unrelated to PMR.  Apparently some spurs or something have formed giving me quite a bit of pain in them.  I also find I'm aching a bit more when I get up in the AM...just my whole body, but it seems to disappear once I get going.

    Maybe this will help actually;  This is my third attempt to get from 6 to 5.5.  The first time was an obvious fail.  The second time I was going to be traveling for quite awhile and decided to stop since I'd be under stress, and that's not a good time to reduce.   This third time is working okay except for the aches noted above.

    Sooo...my best advice according to DSNS would be to go back to 6mg, and consider this effort a fail.  Give it a week...maybe two.  If the pain is gone you know you went too low.  BTW, that wouldn't stop me from starting again in about 2 weeks and here is why:  One of the cool things about DSNS in my opinion is that even if you fail to get through it and go the next level down, at least for the period you were doing it you took just a bit less prednisone.  What's bad about that?  Also, if I CAN take less prednisone, I want to know as soon as possible.  Past the year and a half mark I'm starting to see more side effects.  Very thin skin for starters.

    So for me right now, I consider the morning aches tolerable, and just as likely to be just part of being past my "sell by" date as a flare.  If it gets any worse I'll call it a fail and go back to 6 yet again.

    Mark

    • rrobinson75
      rrobinson75 mark9992

      Posted

      Thank you , Mark! I am going to go back to 6mg and try again at a later date. I'm wanting so badly to get over this!

  • EileenH
    EileenH rrobinson75

    Posted

    I would certainly stop the reduction for now and stick at 6mg for a bit before trying again once it has stopped. If it is just buttocks and thighs it COULD be due to piriformis syndrome and if so a targetted approach to that helps a lot. If you have access to a physiotherapist they can diagnose it and help improve it.
  • Guest
    Guest rrobinson75

    Posted

    Hi. I'm at same stage as you. I am afraid I ignore my thigh muscle aches. initially I thought i was having a flair but as it was tolerable (though not insignificant) & importantly not getting worse. I have just accepted it and continued dead slow 1mg at a time (as take enteric coated.) I've split the dose 5/1mg am/pm which helps a bit.

    I do wonder if perhaps we are a little too cautious sometimes though I totally respect Eileen and everyones opinions. interestingly my esr remains in normal limits, if it goes up I'll know to slow down. I'm 64 am a fairly energetic gardener !   Goodluck

    • EileenH
      EileenH Guest

      Posted

      Your ESR will remain in normal limits as long as you take enough pred to manage the inflammation anyway. For some people it will remain suppressed even if inflammation starts up as long as they are on pred. 

      As for being too cautious - we have always said, if you think that, TRY going faster and see what happens. Some people CAN reduce faster - especially when they are a long way from their longer term dose. But once you are below 7mg you need to go slower for another reason - to allow your adrenal function a staged return to work. The screams you hear here are generally after a doctor has suggested 2.5mg steps - which even the top experts say is too much in a taper below 15mg.

    • Guest
      Guest EileenH

      Posted

      thanks Eileen. am on the case with Adrenals and going slow, not attempting to rush. just curious as I have seem comments for people reducing by 1/2 mg above 10mgs!  I've had back of thigh & arm aches for ages...initially I presumed it was a flair but have decided to ignore it now unless it really halts me in my tracks. Am I alone here?  On 6mgs now and so far no fatigue etc..hope I'm not tempting fate, will sit a 5mgs for a while I think too...

      I'm finding my joints/arthritis are getting worse, funny how PMR seems to seek out and rattle your underlying 'weaknesses' !

      On the magic potion front...good old Food Program on R4 about 3/52 ago talked about inflamatory qualities of Tumeric, really interesting,  So its a nightly drink of Tumeric and Ginger for me tempered with that dark chilli choc...what say you Eileen?

    • EileenH
      EileenH Guest

      Posted

      One top guy likes to keep patients at 5mg for up to 9 months - he finds it makes the rest of the taper easier.

      The chili chocolate and the ginger sound good. Not so sure about the turmeric though its properties are legendary...

    • Guest
      Guest EileenH

      Posted

      oh dear, patience is not a quality I pocess...maybe 6 !
    • Anhaga
      Anhaga Guest

      Posted

      We are all different.  I didn't need to stay at 5 forever.  On the other hand I've been slow since achieving 3.  But I'd rather be slow at this lower level than stuck at 5 if I don't need to be.  Patience has never been my strong point either, but PMR has certainly changed that.  It's with some amazement that I look back and realize that it took one year to get from 15 to 3.5, and then another year to get from 3.5 to 1.5!  

    • EileenH
      EileenH Guest

      Posted

      Something a lot of people learn as a result of PMR. Rushing to get off almost always results in having to go back - so it wasn't faster in the end.

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