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New patient, seeking answers

Posted , 13 users are following.

wilma80366
wilma80366

I was diagnosed with PMR 6 weeks ago and am on 30 mg prednisone.  I take it in the morning with breakfast and can't do very much of anything for several hours as my arms, hips and legs are so achy and sore.  After lunch, I feel much better and that lasts until evening.  Is this going to be my life?

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  • kitsalley
    kitsalley wilma80366

    Posted

    I was diagnosed with PMR about one year ago.  Have tapered to 7 1/2 mg a day but am having difficulty with hip girdle.  I now waddle or toddle and balance is a problem. The hip girdle pain can be very severe.  I am now seeing a rheumatologist who may switch me to methodrexate.  I have found swimming in the morning and doing Tai Chi exercises in the pool to be the most helpful.  I can actually feel almost normal after I exercise.  
  • jeannae68307
    jeannae68307 wilma80366

    Posted

    I have had PMR for 22 months. For the first 18 months I really struggled with the pain.  It took all day for the prednisone to work.  Then they switched me to prednisolone. It worked much quicker on me because it was a metabolite of prednisone and got into my system much faster.  

    Have had had a difficult time getting dose down and now I have adrenal insufficiency from being on the pred so long so I am exhausted all the time.  Hoping that when I get down to 5 mg that maybe my adrenals will start slowly to begin functioning again.  They say that is why I am exhausted.

  • jeannae68307
    jeannae68307 wilma80366

    Posted

    I also have found over last 22 months that eating frozen dark red cherries daily helps with the inflammation.  My husband can always tell if I run out because I am stiffer and in more pain.  I also now have a small piece of candied ginger each day for pain.  I am currently on 9 mg and heading down by .6 mg every week till I get to 6 mg them I will drop by .5 mg each month.  I am in the US and of Irish descent.
    • donna60512
      donna60512 jeannae68307

      Posted

      The way you are going down in your dose sounds more like in the UK.  I like they way their doctors go down in small increments.  I shall try the cherries and ginger.  Thanks!!  I appreciate hearing of natural things to take.  Donna
    • Anniecurd
      Anniecurd donna60512

      Posted

      I'll try the cherries in my smoothie. I make one every day with with every anti-inflammatory fruit and veg I can think of, plus turmeric, coconut oil, flaxseed and ground pepper. The unexpected benefit is, I've become very regular.

    • jeannae68307
      jeannae68307 Anniecurd

      Posted

      Annie,

      what does the pepper do and how much turmeric and does it help?  Thanks.

    • Anniecurd
      Anniecurd jeannae68307

      Posted

      I add 1tsp of turmeric, and a pinch of pepper. The pepper helps the body use the turmeric.
    • Anniecurd
      Anniecurd jeannae68307

      Posted

      I forgot. I started on 15mg of pred in August 2015, I am now on 3mg. In July I will reduce to 2mg per the rheum. I usually reduce by one half every two weeks instead of one every month. I think the smaller increments works better for me. I haven't had a flare doing it this way and of course eating outs of anti-inflammatory foods.

    • Anniecurd
      Anniecurd

      Posted

      I meant 'lots', not 'outs'.

    • jeannae68307
      jeannae68307 Anniecurd

      Posted

      And you haven't experienced any adrenal insufficiency,problems after being on pred this long?

    • Anhaga
      Anhaga donna60512

      Posted

      If you can stand the feeling of "hotness" in your mouth try making a tea out of grated fresh ginger rather than using candied ginger.  I have a cup of this every evening, just about a teaspoon of grated fresh gingerroot steeped for at least fifteen minutes, no sweetener.  Although I have heard some people like to add a squeeze of fresh lemon juice.  Like turmeric ginger has anti-inflammatory properties, they are members of the same family.

  • Nancy_O
    Nancy_O wilma80366

    Posted

    Hi Wilma,

    I am one year into this journey and I am finally starting to feel better. My pain was pretty well managed after the first week on prednisone, but the fatigue was overwhelming. Any time I tried to do too much, I would be reminded pretty quickly by feeling so tired and useless. I have figured out my pace now

    I'm good between 10-3, but can't expect much more than that. I'm 59, work part-time and have a large family, so it was difficult to "dial back" my expectations of myself. I'm feeling much better after a year of trial and error to sort out how to live with this. Good luck.

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