possible polymyalgia rheumatica

bridesmum
bridesmum Member Posts: 181
edited 1. Apr 2015, 18:38 in Living with Arthritis archive
I had a variety of blood test last week as I was querying if I could possibly have PMR (polymyalgia rhumatica) as before I was diagnosed with fibromyalgia 13
Years ago my gp queried pmr. She referred me to a rheumatologist who said I was too young. (I was 42). Anyway as I have had raised esr for 13 years he is trying me with prednisolone for one week to see if it has any effect. If it does take away the pain it confirms the diagnosis, if it doesn't he said that he will start investigating possible rheumatoid arthritis, I have been diagnosed with osteoarthritis in my knees and hip, but have widespread pain and fatigue which is usually put down to my fibromyalgia. At the moment I can't really lift my left arm properly and certainly couldn't pick something up.

Comments

  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    bridesmum wrote:
    he is trying me with prednisolone for one week to see if it has any effect. If it does take away the pain it confirms the diagnosis, if it doesn't he said that he will start investigating possible rheumatoid arthritis,

    :? Really? But pred eases RA too. How will he know the difference?
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    bridesmum wrote:
    he is trying me with prednisolone for one week to see if it has any effect. If it does take away the pain it confirms the diagnosis, if it doesn't he said that he will start investigating possible rheumatoid arthritis,

    :? Really? But pred eases RA too. How will he know the difference?



    My question too!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Pred eases my PsA, in fact pred eases many conditions but (if I have read it correctly) at least you are under the care of a rheumatologist and I hope he can get to the bottom of this sooner rather than later. As for that nonsense of being too young for something - ye gods. If some professionals hold onto that archaic viewpoint what hope is there for their patients? DD
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    I'm not under a rheumatologist at the moment just my new GP. I have to go back after a week to discuss where to go from here.I would think that either way he will refer me to a rheumatologist. I don't know if it's wishful thinking but I think I feel less stiff and not in as much pain. So watch this space
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    If you are taking pred then of course you feel better - it is the ultimate in con merchants. :wink: It's not addressing any symptoms, just masking them, but it's a pleasant feeling. DD
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    I know it's a bit of a conundrum isn't it? On the PMR website it says that people with pmr on taking prednisolone find relief usually within hours and it seems almost miraculous suddenly being able to walk up and down stairs after going on hands and knees! That isn't the case for me...I took mine at 6pm last night and had one of my worst nights ever horrible pain in my groin radiating into my buttock and down my thigh to my knee, I hardly slept at all. On waking up I didn't feel any different than usual but decided to try another dose at 11am, after that I did seem to improve but certainly not pain free, in fact my hip is really quite painful now :cry:
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    My most dramatic experience with pred ( I have RA) came many years ago. I literally couldn't get out of bed. My GP came, prescribed pred and 2 hours later I was running round happily. What dose are you on?
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    20mg daily. Today I made an apple crumble and a fish curry. I even hoovered up the sugar I spilt all over the floor. Last week I couldn't have done this without tears!
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Oh that does sound like an improvement. I think, unless it would interact with another drug you take, it's usually best to take steroids in the morning because that is when we would naturally synthesise our own cortisoids, or when production is at a peak. Hope you enjoyed your own cooking!
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    Please take the pred exactly as prescribed by your GP. Don't just take a pill here and there as you feel like it. This is very important. It's a powerful med
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    Day 3 of prednisolone, definitely feel less fatigued and slightly less pain but not the " throw down your crutches and walk!" as described by people with PMR on taking prednisolone so I don't think I've got pmr after all. As a couple of you have said it helps with RA so possibly that then.
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I'm not sure it necessarily always works like that. Sticky said far more eloquently than I managed that it is important to always take the dose as prescribed rather than at different times of the day.

    Prednisolone tablets typically have a 36 hour effectiveness in your body. That you aren't responding exactly as quickly as others have doesn't mean you can diagnose one way or the other really. That's for your rheumatologist to do. I think you should enjoy the clear improvement you have experienced - fish curry and apple crumble making - don't over do things and discuss those changes with your rheumatologist. It's quite a significant improvement that you can manage such activities where you couldn't prior to steroids.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Pred should be taken first thing in the morning, to mimic the body's own production of the natural version. The sooner you see a rheumatologist the better because pred can help everything improve, no matter what the disease. I reckon this little 'experiment' by your GP will prove that pred has made you feel better but not much else. DD
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    On Stickys advice I've been taking the pred with breakfast all 4 tablets at once. I am really enjoying feeling more alert and not falling asleep mid afternoon and halfway through midsummer murders... I never see the end of a program! The pain is a bit better but the shoulder pain and neck pain isn't really any better. I don't think that I a have PMR and as you say DD I think it's just the pred giving me a little boost. I will take the weeks course of pred the doctor gave me but once it's finished I don't want to continue with it.
  • stickywicket
    stickywicket Member Posts: 27,098
    edited 30. Nov -1, 00:00
    bridesmum wrote:
    On Stickys advice I've been taking the pred with breakfast all 4 tablets at once.
    Please take the pred exactly as prescribed by your GP.

    That was, and remains, my advice.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    With respect you are in no position to judge what you may or may not have. As patients we don't have the knowledge or experience of diagnosis unlike those who treat us. Your GP may not be as clued-up as they would like to think so I hope you will soon be referred to those who deal with these conditions day in and day out.

    There's no doubt that pred is seductive, that feeling of being brighter and more able is a wonderful thing and I loved it. I was given it by my rheumatologist on the basis of need because I was off all other meds at the time and struggling badly. I couldn't believe the difference I felt within four hours of taking my first dose. With regard to taking it I would do it first thing, then after fifteen minutes or so eat some food, then thirty minutes after that do the rest of my pills. DD
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    My doctor gave me 7 days worth of pred and said to go back after a week and then will decide where to go to from here. He did say that if pred doesn't have the result he'd expect for PMR he will start investigation into why I have consistently high esr's. I am planning to ask him to refer me to a rheumatologist as either way I nead the correct treatment.
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
    Went back to see my gp today, since finishing the weeks supply of prednisolone on sunday I have felt rotten. Lots of pain and dreadful fatigue I hadn't realised how much the pred was helping until I stopped taking it. My esr was 55 and due to the improvement I felt he thinks it could well be PMR. He has given me 4 weeks worth of 15mg prednisolone, I am to go for blood tests in 3 weeks and see him again in 4 weeks so we will see what happens next! I'm still not sure and really worry about taking steroids but will enjoy at least 4 weeks of energy and being more or less pain free (except for my oa knees and hip)

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