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PMR Flare

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holly28923
holly28923

I have been in treatment for PMR for about a year, undiagnosed for 20 months prior to treatment.  I really overdid it and feel that I'm experiencing a flare.  A friend invited us on a hiking trip.  I had no idea that we would be hiking all day at altitude.  On my way home I was hit with a wave of fatigue followed by a 101.6 fever.  Then came the muscle spasms and pain. The fever is back to low grade after 3 days, but I continue with severe fatigue and a bad case of vertigo.  I was on 8 mg of prednisone prior to the flare.  Went back up to 10mg for a couple days.  Now back at 8mg.  Feeling pretty darn miserable.  Should I go back to a higher dose of prednisone?  Any other suggestions?

0 likes, 14 replies

14 Replies

  • EileenH
    EileenH holly28923

    Posted

    You could try staying at 10mg for a bit longer but if the 10mg doesn't do a lot I think you may have to just ride it out - it really sounds as if your muscles are just protesting at being over-used. It's as if you have run a marathon without having done the training - and now you have the sore stiff muscles as pay-back.

    The pred only manages the inflammation to allow a better quality of life until the underlying cause of the symptoms we call PMR burns out and goes into remission. This is an autoimmune disorder that makes your immune system unable to recognise your body tissues as "self" so that it attacks them as if they were invading virus or bacteria. This damages the cells and leads to the inflammation that is then the cause of the pain and stiffness. Pred has no effect on this part of PMR - it chugs away in the background and turns round to bite if you overdo it. Your muscles are unable to tolerate acute exercise - if you build up VERY slowly and carefully you can get to a stage of being able to do much more but to go from a normal day to a long hike - and especially at altitude - is expecting a bit much. 

    How high were you? I know I can walk a lot further at sea-level than I can here where I live at 820m/2,800 ft. which isn't particularly high but still makes a big difference. I know exactly what you mean by the wave of fatigue - I get them occasionally when I've been doing more than usual (not hiking though) and all I can do is retreat to bed whatever time of day it is. But not having physically overdone it I'm usually fine by next day.

    You might fine that using an NSAID gel on the sore muscles helps a bit as a painkiller - this isn't just PMR, this is sore muscles due to over-use.

    Hope you feel better soon.

    • holly28923
      holly28923 EileenH

      Posted

      I am accustomed to a hiking/walking routine of 3-5 miles per day, 4- 5 times per week, but not at altitude.   The vacation hikes were 8-9 miles spread out through the entire day, but at 6,000-8,3000 altitude.  Much of the hiking was up and down cliffs.  I was surprised that I was able to do it, but I sure paid the price. I feel that you are right about increasing the dose to 10mg.  I also ran by my Rheumie.  She has been very open to my regulating the dose based upon symptoms.  Just wondering if I will need even more than the 10mg to get things under control.  Thank you for your insight Eileen.   
    • EileenH
      EileenH holly28923

      Posted

      At above 2000m/6000ft-ish the oxygen levels are lower - and part of the problem in PMR is a reduced oxygen/nutrient supply to the muscles. And up and down really does go for the muscles. I did a similar walk, not quite as long but the same altitude, the autumn after the PMR first struck (I didn't know I had it) and it took me 4 or 5 days to be able to walk without severe leg discomfort. It didn't occur to me at the time because the friend I was with also had a few days of "ouch"! It was only looking back years later that I realised what had happened.

  • linfran
    linfran holly28923

    Posted

    I hope you're feeling better now Holly.

    You mentioned you went 20 months before your PMR was diagnosed.May I ask what symptoms you had and what were any previous diagnoses?

    • holly28923
      holly28923 linfran

      Posted

      I had been treated for late stage Lyme disease for quite some time.  It was resistant to IV antibiotics.  The symptoms changed dramatically when I became very ill with a high fever and painful muscle spasms and joints.  This lasted for about 1 week.  I then had more typical PMR/GCA symptoms of muscle and joint pain.  Doctors first thought that a spinal fusion in my neck had failed, Then they thought MS or another neurological disorder. Then the tests shifted to neuromuscular disorders.  Went through about $50,000 of tests and treatment.Trying to figure out the puzzle, I went through notes for all of the physicians I had seen.  The first infectious disease doctor I had seen for late stage Lyme had said it could be PMR/GCA.  Lyme could have opened the door for autoimmune disease.  Found a new Rheumie who ran Sed rate and CRP to confirm with symptoms.  What a saga.    
  • linfran
    linfran holly28923

    Posted

    Thanks for sharing, Holly. So did you actually have Lymes, which led to your immune system being suppressed and thus in came PMR.? Or was it never Lymes? Sorry, I wasn't quite sure.

    • holly28923
      holly28923 linfran

      Posted

      Yes, I did have Lyme disease.  The doctors missed it, but I tested positive about 1 year later.  I even had the bull's eye rashes all over my trunk, so it was a bad case of Lyme.  I did take a picture of the rashes.  My infectious disease doctor who made the diagnosis said my urgent care and emergency room doctors were idiots to not be able to diagnose  an obvious case of lyme disease.  By the time it was diagnosed it was late stage neurologic lyme.  It definitely did a number on my immune system.

    • linfran
      linfran holly28923

      Posted

      Yes, that is interesting. I'm thinking my PMR started on the coat tails of a bout of pneumonia.

  • dboza
    dboza holly28923

    Posted

    Wow, undiagnosed Lyme's ! Where I live Lyme's is very prevalent, our dog tested negative for it, but presented the symptoms. Vet treated her anyway because of that. Our dog picked it up either in our yard or our park,because those are only 2 places we walk. My biggest fear is strep, because I had it and then had a PMR

    flare up.

    • holly28923
      holly28923 dboza

      Posted

      I wish that they had the strip blood test they use for dogs available for humans.  It seems odd that it's okay for dogs, but not humans.  Much easier to diagnose on the spot.  All of our dogs have had Lyme.  We live in an endemic area - hot bed for Lyme.

    • dboza
      dboza holly28923

      Posted

      The vet gave our dog the meds and it was like a miracle. I knew the feeling after I took my first prednisone dose. Where do you live? I live in Minnesota.
  • dboza
    dboza holly28923

    Posted

    Ha! Ha! I am a Bear's fan. I grew up in Chicago. Now, I get so tense with the Cubbies, my joints really hurt. We have a cabin in WI, so I always worried about the kids and ticks, now it is the dog and me. Didn't worry so much about my backyard, but we live in a wooded area. Have you gone on the pmrusa group in yahoo? This one is more informative. I had what we now believe was my first flare up 24 years ago. No one, including my rheumatologist knew what it was. I just had my second flare up last November.

    • holly28923
      holly28923 dboza

      Posted

      I haven't tried the yahoo group, but I do find this group very informative.  Congrats on your Cubbies!

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