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Reducing Prednisone

Posted , 6 users are following.

janice01811
janice01811

am on 2 mg and 3 mg every other day my GP wants me off of pred by Febuary . My problem is that I have a acky body everyday, it  goes away in the late afternoon. If I tell my GP about it she said you will have pain and to take some Tylenol. Now she wants me to take an antidepressant she feels that would help with a lot of my problems high blood pressure, diabetes, and PMR. I am always anxious and worry about everything. It is strange but where I was on the higher numbers of prednisone. I lost weight, My sugar numbers were down in the  morning, and my blood pressure was down too. Now everything has gone crazy very high sugar numbers in the morning 150 which before was 83 don't understand why when I'm finally withdrawing from prednisone everything has gone the opposite of what it should be. I've gained 10 pounds since I went down to 7 mg and lower. I don't know what's happening to my body. Is this normal from withdrawing from prednisone ?

0 likes, 15 replies

15 Replies

  • pauline36422
    pauline36422 janice01811

    Posted

    i too am on 2 mg   with some niggly gilly pain, on and off.  nothing too bad though,

    but i am so worrid  when i start reducing again in feb.  it will get   worse. and return,

           or will it just  get better as time goes on.    does thgis mean my  body is slowly

    making its own  cortisol.    also another question.   how long  after finishing pred altogether  will the pain go.

  • EileenH
    EileenH janice01811

    Posted

    I haven't met anyone for whom Tylenol has dealt with PMR pain - and I'm not sure it has helped with steroid withdrawal pain either. However - if it is steroid withdrawal pain then it WILL fade with time. A better way of dealing with it is to spread your reduction over a few weeks rather than doing it from one day to the next. This link

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

    will take you to a thread where there is a slow reduction programme in posts 4 and 5. That may help with the pain you are having.

    I think you need your GP to explain her logic about using antidepressants to combat your problems - or have you misunderstood her? 

    And no - I haven't come across anyone before whose blood sugars have gone through the roof as pred comes down! That is something new. However, if you LOST weight on pred then it is likely that you will put some back on as you reduce - some people do lose weight on pred although it is less likely than putting weight on. 

    I think your GP maybe wants to have you pred-free to investigate the other things without complications. 

    For both of you - if you are going to have problems because your body isn't making its own cortisol it will happen before you finally stop pred, below about 5mg usually, so you are both below that and aren't complaining of those sort of problems.

    Generally it is felt that it takes a year for your body to get back to normal after stopping pred and a few ladies who have stopped pred say much the same. However - do not expect to be totally pain-free when you stop taking pred. If you have osteoarthritis, for example, pred does help with that pain to some extent so without pred that may become a problem. I don't know how long you have had PMR but remember you are older than you were before going onto pred - there are going to be some changes just because you are older.

     

    • pauline36422
      pauline36422 EileenH

      Posted

      i eileen re getting older  ,  started with pmr  nearly 3   years ago  but on pred around 2 years.  and i thought the  same as you  at 72,  i most likely wil have  aches and pains. as the norm.   so i keep telling myself  this is what the niggly pains are  and  not the pmr coming back.   i love your feed back to questions it puts my mind at rest.
    • EileenH
      EileenH pauline36422

      Posted

      There is likely to be some discomfort as you reduce - but the slower you go about the last few mgs the better. At this level the side-effects are minimal and no-one should nag you to go too fast. Allowing 2 or 3 months at each dose before having a go at the next reduction is a good idea - it can only help and will do no harm.

      I'm at 4mg, had a few niggles at 3mg so went back up. I have NO intention of rushing it - and if anything my GP is even more wary of a fast reduction than I am. She is an angel - definitely should be cloned.  I am a (mere) 62, have had PMR for 10 years and been on pred for 5. I really can't imagine I'll feel 52 when I stop pred. It's a nice thought though!!!!

    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      If sugars are high might that cause weight loss. I have a friend who is a brittle diabetic and struggles with weight loss because he runs high so often. Just a thought

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      I hadn't thought of that - you're right enough, it is one of the symptoms of severe diabetes too isn't it.
    • susan07411
      susan07411 EileenH

      Posted

      I agree with you whole heartily Eileen. Only you know what you feel. Take the reducing according to how you feel, take your time not anyone else's
  • pauline36422
    pauline36422 janice01811

    Posted

    eillen i ment i was put on pred 18 monthafter  the pain started  anbd  still on it
  • susan07411
    susan07411 janice01811

    Posted

    I have been off prednisone for 5 weeks. I still get some pain especially when something stresses me. It is not as bad as the original pmr I do find that my mind is clearer. I was in my fifties when I was diagnosed with PMR. I am now in my early sixties. I found that taking vitamine D3 and B12 seems to help me. I also have lichen sclerosus which is why I take D3 for skin disease. The withdrawal symptoms are scary I am not sure if I am doing the right thing, but my quality of life is better without the medication. I withdrew from prednisone over a one year period. There are many ups and downs but I felt determined this time. I also use qi gung and tai chi to help me manage the pain. Sometimes the exercise may only be deep meditatatve breathing, with no movement. For me this seems to work.

  • pauline36422
    pauline36422 janice01811

    Posted

    susano  i hope  when i start to reduce again in mid jan all goes well.  i am really worrid it will  return   but keeping fingers crossed all goes well.i am thinking of  2 to

    1.3/4  alternat for 1 week then stay at 1 3/4  for 2 weeks then reuce the same  way again.  hopeing this will work   glad you have achieved a good result

    • susan07411
      susan07411 pauline36422

      Posted

      Pauline, I sincerely hope that it goes well for you it is not an easy task...... I found at first that I could not tell the difference between polymyalgia pain and withdraw pain. I persevered anyway and found that the withdraw pain did not last as long and was not as severe as the polymyalgia pain although similar. The pain gets less as the weeks go on. These are only my experiences and I think that all our bodies are programmed differently. My biggest breakthrough was not identifying myself with pain. 'My pain, my polymyalgia, became the pain, and the polymyalgia'. It became something that was not mine. I disowned it as it is not ME. That is when I could start to control it. I wish you all the good thoughts possible, be positive, get your life back.
    • EileenH
      EileenH susan07411

      Posted

      We have often suggested that steroid withdrawal pain starts immediately you try the lower dose and then improves over the next couple of weeks. Pain signifying the PMR symptoms are returning is delayed as it takes time for the inflammation in the body to build up to the stage of causing pain and stiffness but then increases steadily rather than improving. 

      If you make each drop as small as possible, even spreading it over a few weeks as described in the reduction plans circulating the forums, then any return of pain is more likely to be PMR resurfacing than the body objecting to the pred being removed. And, of course, if you have had pain for some time then you are that bit older - however much we wish it were not so! Pred does help with osteoarthritis pain as well and that often reappears as the pred dose reduces.

  • pauline36422
    pauline36422 janice01811

    Posted

    i really love eileens comments,   she makes so easy to understand, but i bet she gets a bit  fed up of us all asking similar  questions.   she would be a millionare

    if she had her own surgery for pmr   lol

     

    • tavidu
      tavidu EileenH

      Posted

      And be up against 3 other doctors with medium medical knowledge of the immune system. Might as well give you the trophy now Eileen.
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