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am i losing my mind?

Posted , 13 users are following.

tuningup
tuningup

I was diagnosed with pmr 8 weeks ago...im on predisone 17.5 after decrease from 20... my sed rate started at 68 and is now 45.. here is my problem...i had every classic symtom before diagnosis and i have no idea how long ive had it ..since cordisone my pain is a lot better but i still get tired easy  to the point where i have to lay down...i still ache all over at times and just dont feel good...i have good days  and bad days...my appitite is back with an increase but i crave foods that i never cared for before like milk..eggs .. juice and ice cream..not my favorite foods at all...after a few hours of normal activity im beat...i was under the impression that i would feel better after predisone but for the most part i feel about the same except pain is better...am i normal or do i need to tell my dr..this is new to me and i dont know what to expect through this process..i am 68 and getting discouraged but my faith always helps..thank you for any advice or informaion...sharon

5 likes, 23 replies

23 Replies

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  • dianthusdoris
    dianthusdoris tuningup

    Posted

    Don't get disheartened.   I have been on Pred for a month now - 15mg - and my GP wanted to take me off them when I hadn't had a miraculous recovery after 7 days!   I persuaded him to let me carry on with them, and admit I am feeling a bit better now, and most of the stiffness has gone.   However, I am still very tired, I still have quite a lot of aches and pains, and I never know when I wake whether it is going to be a good or a bad day.   So you are no alone.   I am so thankful for this site.    I don't know what I would have done if I hadn't found it, and found all the helpful people and their helpful advice on it.
  • snapperblue
    snapperblue tuningup

    Posted

    My PMR started only 5 weeks ago, so I am also new at this.  I related immediately to your weird cravings.  For a week or so, I lost my appetite, then began having sudden "visions" of foods I almost never eat, like ice cream or doughnuts. Out of the blue, while driving or on the computer- bam!  ICE CREAM!!  NOW!  These were very specific intense cravings.  They seem to have gone away for now.  Weird.  

    In the first 2 weeks (before prednisone), I was very tired and easily overwhelmed.  I feel much better but am slowly recognizing just what the others on the forum have told you, that the fatigue is reduced but not gone.  It comes and goes unpredictably.  

    Like you I was lured into expecting that, once on 15 mg of prednisone, I'd basically be back to normal and just working on how fast I could reduce the dose.  Alas! Not so!  For some of us, it requires a higher dose and a longer time.  However, based on what others on the forum report, you should be able to manage with little pain and a good quality of life.

     

  • vawils
    vawils tuningup

    Posted

    No, you are not losing your mind as the responses you have already received attest.  I and others share these exact issues you mention.  Eileen as usual has given you a great response with great information.  From my experience I still have morning aches and pains some which continue to be around at a manageable level for the most part and something I have just gotten used to..kind of the new "normal". I do have new food cravings and some crazy appetitie swings and have gained weight but trying to manage that. Fatigue is also an issue that I work around and adapt to.   I can also relate to the euphoric feeling that prednisone provides that Eileen mentions - a good and bad feeling because I am aware of it and know it is a chemical driven phenomenom and not neccessarily me.  Over time I think you will feel better overall as your body adapts to the changes and the prednisone dosage (as long as you are at the right level) and you become more attuned to what you can and cannot do and adapt to the new normal.   Good luck and hang in there.
  • Porgi
    Porgi tuningup

    Posted

    I've just come off prednisolone given me for polymyalgia. I've only been on it for a year having been started on 25mg.l have had regular blood tests by GP but am in constant pain and have lost a great deal of weight. plus my muscles are all wasted however he isn't concerned even though I was very fit until may.i think I've been weaned off the prednisolone far too quickly. Any suggestions as to what I can do would be appreciated.

    • EileenH
      EileenH Porgi

      Posted

      Can I suggest you post this again as a new thread - this one is over 3 years old and won't be seen by a lot of current members of the forum.

      Yes, of course you have been weaned off pred too quickly - PMR lasts at least 2 years and only about a quarter get off pred in that time. Most take more like 4 to 6 years. But - was the doctor sure it was PMR? Tell me more about your symptoms and response to pred. What tests did your doctor do? At what stage did the muscle wasting start? 

      Did you get pain relief at the start on the 25mg? That is what you should have been aiming for as you reduced: you were looking for the lowest dose that gave you that level of relief. PMR is a chronic disorder, not one you give pred for a short time and then wean off. You will get off pred successfully only when the underlying cause of the symptoms we call PMR has burnt out and gone into remission. 

      Basically though - you need a better doctor. If this was a GP there must be another one in the practice you could speak to. If not - insist on a referral to a rheumatologist. If it was a rheumy - get a referral to another for a second opinion.

    • Porgi
      Porgi EileenH

      Posted

      Yes I got relief from the pain within a couple of days. I was then weaned off fairly slowly until about May of this year but then rapidly taken off it. It was my GP who has been looking after me.  I saw a consultant at first in hospital when I had been rushed in with reactive arthritis last summer and I was put on a very short dose of steroids till that eased. However the pain came back and the consultant saw me in outpatients and said he was sure it was the reactive arthritis that had returned but then wrote to me and said after discussion with the GP he had decided it was PMR. He then saw me once more and said he was passing my care back to the GP because in the UK its GPs who manage PMR.  The GP has kept takng regular blood tests for inflammation and kept saying I was fine and needed to reduce the steroid but I think he's been doing the test far too early - almost as soon as I'd reduced the dosage. Also I've had to press hard, as have my husband, my daughter - a very experienced ICU nurse, and my son in order for the GP to even refer me for tests- so now I've just had an endoscopy that showed nothing, I'm booked for an X-ray, and am waiting for an ultrasound of my stomachand am booked in to see a psychiatrist in January because the GP says I'm depressed. I am also waiting for an appointment with another consultant who I saw when tests done in hospital last year showed I also had microscopic colitis. As I live in Scotland c9onsultant can cross refer to each other so I'm hoping this consultant will refer me back to the Rheumatologist who first saw me last year

    • EileenH
      EileenH Porgi

      Posted

      Er- depressive mood is part of PMR so it is hardly surprising if you are depressed. 

      Of course the blood markers were fine - you were on enough pred to manage the daily dollop of new inflammation. However - microscopic colitis rings a bell somewhere. Plus "reactive arthritis". I wonder if a vasculitis specialist is what you want (a proper one, not just a rheumatologist).

      You know there is a Scottish PMRGCA charity? The link is in this post:

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

      Where are you? I know you can't choose your consultant except for certain cases - but I didn't know Scottish consultants can still cross-refer. 

       

  • Joydeck
    Joydeck tuningup

    Posted

    Perhaps I'm just lucky.  I am also 68 years-old and was diagnosed 9 weeks ago.  After 3 weeks of painful trial and error, I settled on a 17/7 split dose and have since tapered to 13/7 reducing a little slower than 1 mg a week.  I have full control of my tapering and at the first hint of PMR returning - usually in the outer shoulders - I instantly up the dose by 1 mg (weighing broken tablets myself).  I would dread following some tapering regime imposed by a GP.

    For the past month I have generally had very mild, residual, PMR symptoms in the outer shoulders but even these disappeared entirely a few days ago I'm pleased to say. 

    I eat healthily and heartily but I have only regained one of the 3 kg I lost before PMR diagnosis.  The only prednisolone symptom I have had is unsightly bleeding under the skin when I carelessly struck myself on the shin with a tennis racquet a fortnight ago.

    I lost much fitness in the month before PMR diagnosis but, since starting prednisolone, I have returned to strenuous exercise, 3+ hours a day, without ill-effect. I feel fine.

    I wish you well, Sharon.

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