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Can y anyone tell me please I feel his I see common plac

Posted , 8 users are following.

george82764
george82764

im now 51, diagnosed 18 months ago was of for Orkney hens diagnosed for 3 months maintained a dose of pred at 15mg.  Also had chest pains and was tested for angina fortunately clear, still get chest pains.

went to dr this January as I was very tired and sore, he is reducing my dose intially every week no way very second week now at 7mg still just as tired and sore and signed off work so far for another 3 months. 

Is is this common ? Do others feel like me in that I'm wondering if this is in my head and I'm being lazy and not trying hard enough to get back to work ?

0 likes, 15 replies

15 Replies

  • penelope10875
    penelope10875 george82764

    Posted

    You are reducing too fast. You need to stabalise and feel better on each dose level before you reduce again.

    7mg is a difficult stage, I am there at the moment and finding it really hard. I's when your own body should start producing cortisteroids itself and sometimes it just takes time.

    Can you just manage it yourself or is the Doctor watching closely. If so refer him to this site. He might learn something!

    You are not being lazy, I am just off for my afternoon rest! Fatigue is part of the disease.

  • tavidu
    tavidu george82764

    Posted

    Hi George

    Do not know your circumstances but reducing weekly is not a very good idea, you are reducing far to quickly.

    Once you get below 10mg a day reducing by 0.5mg a month would be more beneficial to you, thats if your body allows it. I have had PMR for 20 plus months now and have only just reduced to 12mg (in stages of 0.5mg at monthly intervals). Take it slowly and ignore your doctor unless he has other reasons to reduce you quickly. Good luck. Dave (tavidu)

  • noninoni
    noninoni george82764

    Posted

    Orkney hens?  I remember that in Britain the word hen means woman-I think in a friendly way??  But what does Orkney have to do with it?
    • Oregonjohn-UK
      Oregonjohn-UK noninoni

      Posted

      Do love the predictive text it comes up with some strange things sometimes!rolleyes
  • maid_mariane
    maid_mariane george82764

    Posted

    I have been off work since April 2015 diagnosis September 2015 at 20mg. I reduced to 17.5 over 7 weeks in November and now dropping .5mg to 17 mg over 7 weeks.

    Due to my intolerance to dropping even slower than the dead slow I will only drop by 1mg until 10 mg. then maybe by. 5mg.

    As for work there is no way for a multitude of reasons, let's see; brain fog, exhaustion, stress is a kill for pmr and it's a high stress job.

    Never feel guilty for not working while living with pmr, I truly don't know how some do it.

    Mariane

  • george82764
    george82764

    Posted

    My apologies I was not quite with it when I wrote the original post,

    the he heading should say "Can anyone tell me please if how I feel is common place" 

    The end of line one should also read "was off work for three months when diagnosed. I hate predictive text.

    • Anhaga
      Anhaga george82764

      Posted

      So now whenever anyone wants to say they are off work, the code is orkney hens! 

       

  • EileenH
    EileenH george82764

    Posted

    You need to see a doctor who knows what they are doing as if you have PMR this one definitely doesn't. If there isn't another GP you can see who will allow you to reduce at a much slower pace - 1mg a MONTH is still too much for some people -  then you need to tell them you need/want to be referred to a rheumatologist.

    What other medication are you on? And were you reasonably OK at 15mg?

    As the others have said - with PMR working is VERY hard work and while a few of us managed desk jobs anything heavier is often just not possible. If you do manage to work it often means a higher dose to be able to cope.

     

    • george82764
      george82764 EileenH

      Posted

      Thanks Eileen, the doctor referred me to the rheumatologist but all he did was confirm the diagnosis and that was October 2014.

      im on adcal (no idea what it is or does) and lansoprazole again don't know what it does and also sleeping tablets.

      mostly I was okay at 15 but  y the end of December I was shattered completely exhausted so went back to doctor who signed me off and has started the reduction for 15 initially by 1mg per week and now by 1mg every two weeks. I have no idea why, he did say that sustained doses can cause steroid induced diabetes.

      i was also on stuff for angina but they stopped that after tests and doctor thinks the chest pains are from the PMR 

    • EileenH
      EileenH george82764

      Posted

      Adcal is a calcium and vit D supplement to help your bones stay healthy. The chest pains COULD be due to the lansoprazole - it gets some people like that and is a sign to speak to your doctor about it according to the data sheet. Maybe your doctor would let you try using Zantac/ranitidine? Does the same thing but with fewer side effects.

      Yes, you CAN develop steroid induced diabetes with long term use of pred - but I don't have it after 6 years of pred and neither do many others. You can help there by cutting out all processed carbohydrates - things made with white flour and, of course, sugar.

      Pred is the only thing that will manage your PMR and you have a diagnosis so you need it - and at the right dose, that is enough to manage the symptoms. If the doctor stops the pred or puts you to too low a dose then you will be back where you started and will not get better until the underlying cause burns out, then you are said to be in remission. In the meantime - pred manages the symptoms to allow you a better quality of life.

      Your current doctor definitely has no idea how to manage PMR - you will need some pred for anything up to 4 to 6 years though some people do get off pred much sooner. There is no way of knowing. Have you a different doctor you can see? 

    • george82764
      george82764 EileenH

      Posted

      I could ask to see a different doctor in the practise but my work have also referred me to a doctor via their occupational health whom I am seeing next week so will mention this to her.

      Thanks for the pointers I will do as you say but not sure how much luck / dedication I will have to changing my diet. 😀

    • EileenH
      EileenH george82764

      Posted

      If you are seeing Occy Health that may be very helpful for a start - often their doctors are more familiar with it. Make notes before you go so you can tell her what has happened and when.

      If you develop diabetes you will need to change your diet then if it is very based on packaged carbs - you have a bit more leeway at present wink

      It'll help the pain some too probably - many of us find sugary things make it worse - so there is some incentive!  And it will help the weight gain with pred.

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