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Lesson for the unwary!

Posted , 12 users are following.

FlipDover_Aust
FlipDover_Aust

Don't forget to take your pred!

I forgot to take mine yesterday morning, and by lunchtime I could barely walk. By tea time I couldn't get out of the chair or lift my arms.  It certainly reminded me why I have to take it!

3 likes, 57 replies

57 Replies

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  • erika59785
    erika59785 FlipDover_Aust

    Posted

    Yes, prednisone does not last and last.....often only 18 hours.  The pain appears without taking it at a regular time.

     

  • EileenH
    EileenH FlipDover_Aust

    Posted

    Something most people don't do more than once! When it comes back that fast you know the PMR is still very much there sad
  • ptolemy
    ptolemy FlipDover_Aust

    Posted

    When I did it I swore I would never do it again, stupidly I did! Never again though!
  • christine_fay
    christine_fay FlipDover_Aust

    Posted

    Having got down to 7 tablets (7mg) I became so miserable with the brain fug, eyes feeling like a Picasso painting and the awful head sweat drowning me at even the slightest thought of housework making me look as if I had just emerged from the shower...I just stopped. I had one week of heaven and began to truly believe I had recovered...cracked it... after two long years of purgatory. I had tried to reduce and have been reducing slowly for the last 9 months but as soon as I got to 5 all the above symtoms just got worse. As they were side effects of Pred I thought I would try and find out if I really needed this stuff. The side effects stopped after one day and I really felt good..I could enjoy a conversation on the phone again and became far more animated than heve been for two years. Two days ago I began to feel the pain...in my arms and shoulders and mainly in my back around the waist... then my knees started to give way and pain in calves and thighs got bad. I had to go back to five which did not do much...then ten at three thirty this morning...the body and leg pains have gone and I just have a pin point pain in my right shoulder just where my arm joins. I am reluctant to go to a higher dose but realise I am a prisoner to this for some time longer. However dont get me wrong...the few days of getting my brain back and not sweating were worth all the bloody pain and I would do it again if that situation repeated itself.

    I do wish more study and information could be available for this condition.... it isnt fair to just say Prednisolone proves it and controls it when there are so many awful side effects ...often worse than the pain and disability.

    • Anhaga
      Anhaga christine_fay

      Posted

      Christine, have you found any other things that help improve your overall health?  It sounds like you were really close to a breakthrough in your taper down.
    • christine_fay
      christine_fay Anhaga

      Posted

      I have been taking six grmms a day of Taurine to help my muscle strength and heart.. not sure if it does much but it sure didn't stop the pains that came after the week off Pred.. I took ten at 3.30 am this morning and seem to have got through the day with no problems..havent started sweating again yet and my brain is still feeling bright and happy... I wonder if one needs to have a short break to clear the side effects...I am going to taper by 1 in a few days to try and se how low i can go again...I know its wrong to yo yo but I could not stand the side effects I have had for the past six months... I would have just ended it all.
    • Anhaga
      Anhaga christine_fay

      Posted

      Christine, I find it really interesting that you felt so much better (although only for a few days) when you went off pred, when the others posting here felt much worse within hours.  What can that mean?  Does anyone know?
    • christine_fay
      christine_fay Anhaga

      Posted

      I tried something similar a year ago after getting down to 2 MM. however I did not feel as good and it lasted longer before the tiredness and then the pain rendered me useless. This time it was only pain and joints giving way. However the brain clarity was the most impressive and welcome. Two weeks ago I had to sleep for three hours after lunch. I have not done that again yet so something has definitely changed. I still get tired after effort but pick up again much quicker than before. If I could bear the pain and the inability to move my arms and take the risk of my knees collapsing on going Downstairs I would not take the prednisolone again but I am a 24 hour cater to a husband with MS the worst type. I am forced to take this medicine but am determined to get off it someday. I feel renewed that I am still there the same as normal underneath it's influence
    • EileenH
      EileenH christine_fay

      Posted

      Can I just plead one point: however much you detest pred - and I do appreciate that for some people the side-effects are as bad as or worse than the disease - please do not ever stop taking pred altogether overnight. If you are at a regular dose of 2mg it probably wouldn't lead to anything dangerous but to stop at 7mg is risking having an adrenal crisis which can kill you if it isn't recognised or you have a shock/trauma of any sort in the meantime. It may not happen overnight if you have some adrenal function but it can also have a chronic effect over a week or two.

      That is the reason we should carry a card saying we are on long term pred - if you don't recognise the problem or you are unconscious you can't tell the medics. 

    • christine_fay
      christine_fay EileenH

      Posted

      At the point I stopped two weeks ago Eileen, I would have welcomed a deadly crisis willingly. That is how badly reducing below 7 effects my brain and my thinking. I have been unable to write, think talk or plan anything for months... The week long break from pred has given all that back, even if only temporarily at least I know I am still me.... I am now on ten again and will be seeing the doc for review next week. He will insist I reduce to five and then the real side effects will kick in again. I do not want to live like this anymore. It is only because my husband needs constant care that I carry on.
    • EileenH
      EileenH christine_fay

      Posted

      You mean it is LOW pred that causes the problem? You're OK above 7mg?

      Anything else besides that - salt craving, dizzyness, is the fatigue worse, muscle weakness and so on?

    • christine_fay
      christine_fay EileenH

      Posted

      Yes low pred makes me feel awful. I am on ten today but dont feel as good as yesterday..feeling shakey and weak, no get up and go, but my pains have subsided. I am afraid I can feel the fug returning and I really dont want that...it is too much for mje to deal with. I have to be alert in my head.
    • christine_fay
      christine_fay

      Posted

      I am also getting bad water retention again suddenly and have to take water pills...and potassium to counteract the consequences of those...its never ending

       

    • EileenH
      EileenH christine_fay

      Posted

      I asked about the other things because I wondered if you may be suffering from Addison's, lack of adrenal function. That would account for the illness on lower pred. Is there any chance of getting a GP to check with a synacthen test? Or seeing another doctor?
    • EileenH
      EileenH

      Posted

      And I trust they are checking your blood potassium level? Not just assuming that you will be hypokalaemic if they don't give you it. Do watch out for hyperkalaemic signs - except you already have some. 
    • christine_fay
      christine_fay EileenH

      Posted

      I dont think they check me for anything ? I will have to check up on hypokalaemic symptoms not heard of that. The trouble is my husband is so needy and consuming of care I tend to get neglected..

       

    • EileenH
      EileenH christine_fay

      Posted

      All you need is a blood test for urea and electrolytes, a bog standard monitoring test. But I'd be requesting one - your husband may need more than average care, that is no justification for you to be given less than average. I've been there - mine at least was limited because David recovered from his cancer but the repercussions of me being ignored lasted for several years. Hypo/hyperkalaemia can kill. And then they'd have to look after your husband themselves if you weren't there, wouldn't they?
    • christine_fay
      christine_fay EileenH

      Posted

      Takind a potassium tablet does make me feel a little better. I have just had a cataract operation and have lost three good teeth recently..my hair has thinned a lot and I get a feeling in my fingers that I am wearing a too tight ring...although I am not. I am getting palpitations again but not as bad as last year when I went down to 2 pred.
    • christine_fay
      christine_fay EileenH

      Posted

      To be honest Eileen I am past caring...I have had enough. Life is no longer something I really care about any more...I have fought this and so many auto immune conditions that have been devastating plus caring for my husband for the past ten years without any help... I just want to dissapear altogether.
    • EileenH
      EileenH christine_fay

      Posted

      Time to insist on a synacthen test/referral to an endocrinologist. Or you do what you implied to start with - go down the dose again and take yourself off to A&E in a state of collapse. Then they'd have a look.
    • EileenH
      EileenH christine_fay

      Posted

      Yet another carer slipped through the cracks. I'm sorry - I'm too far away to help. But you DO need help - you know that as well as I do.
    • Anhaga
      Anhaga christine_fay

      Posted

      Christine, I too wish I could help you.  Please reach out to someone near you, if not your family there must be a friend, an agency, a church.  By asking for help you will be giving someone a gift - the gift of helping to ease your burden which will be good for their soul.  Never feel that you are imposing.
    • Silver49
      Silver49 christine_fay

      Posted

      I'm not sure where you live but if it's the UK you are entitled to a carer's assessment and they need to look at what help you need for your husband. Please ask your GP to refer you for this urgently. You need 'me time' and they have to organise someone to come in and let you out to do something you enjoy doing. You can contact your local social work department. They have a statutory duty to assess you. Please seek the help you need to support you. I have been a long term carer so understand a bit of what you may be going through but some of mine has eased. We cannot deal with this alone and need to recognise it and seek help. This not an admission of weakness but takes strength to ask before we collapse.
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