1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Reducing my Pred. I've been on 30 mg.of pred. and have so many side effiects. I'm going to call m

Posted , 12 users are following.

Elijo
Elijo

Can you suiggest what might be a feasable reduction?  I took 40 mg. in Nov. when I started, reduced to 30 mg. after a month and have been on 30 since Dec. 1; my MD wanted me to be on 30 until the end of March.  I'm hoping to reduce sooner.  Any feasable suggestion from all of you experienced guys?  I've actually had no paid or stiffness since I started, only some painful cramping in my hands, and a little upper back discomfort.  Your help is greatliy appreciated!

0 likes, 13 replies

13 Replies

  • Elijo
    Elijo

    Posted

    Addit'l note to above:  I'm going to call my MD tomorrow to request a reduction.  I've had no pain or stiffness. (sorry for errors above)
  • nick67069
    nick67069 Elijo

    Posted

    everything I read on this site suggests 10% reduction at the time... My rheumatologist uses blood test in addition to my condition ( no pain or stiffness) to decide when to reduce the dose. I also would use slow transitional method during reduction...

    Here is the sample:

    0      day old dose

    1    day new dose

    2       day old dose

    3        day old dose

    4        day old dose

    5        day new dose

    6       day old dose

    7        day old dose

    8        day new dose

    9        day old dose

    10        day new dose

    11        day new dose 

    12        day old dose

    13        day new dose

    14       day new dose

    15        day new dose

    16        day old dose

    17        day new dose ....

    • Elijo
      Elijo nick67069

      Posted

      Thanks, Nick.  I've seen something similar to that before on the site.  I appreciate you help!  Glad you are doing well!
  • ptolemy
    ptolemy Elijo

    Posted

    Hi Elijo, do you have PMR only? If so you are on a quite high dose. People normally start at 15-20 mg of pred. I can imagine you will have side effects. If you have no pain there is no reason not to reduce your dose. I wonder why your MD wants to keep you on such a high dose for so long. Four months on 30mg is quite a long time. They are normally hell bent on getting us all to reduce as quickly as possible!
    • Elijo
      Elijo ptolemy

      Posted

      As far as I know I don't have GCA but I did discusss it with MD earlier on and I suspect that is why he has the dose so high, to avoid it?  I did have horrible stiffness and pain before I started the pred. Thanks for your response.  Hope you are doing OK..
    • EileenH
      EileenH Elijo

      Posted

      Starting with a high dose won't avoid developing GCA - the idea is to keep the patient at as low a dose as possible so if there isn't any sign of GCA then it is better to use the lower starting dose and then go up if signs of GCA appear later. They don't always.

      If what you have is "just" PMR then you could try 2.5mg at a time - it is as you get lower that the problems arise and the "Dead slow and nearly stop" approach we've suggested on here for years and which is quite similar to what nick describes, just a bit slower, is to make it simpler to reduce without having to cut fiddly tablets to get the 10% change in dose.

      Down to 20mg, reducing 2mg or 2.5mg at a time works for most people, even down to 15/16mg. Then 1mg drops are probably better. 1mg every couple of weeks is the same as 2mg a month and less of a shock to the system.

      It's usually below 10mg you need to creep down the doses but it all depends on you. Some people struggle with 1mg at a time at 20mg but that is quite unusual.

  • old_nanna
    old_nanna Elijo

    Posted

     havent answered any for a long while ,but i too had so bad side affects i reduced like 1 ml a week or twobweeks but do it slow and gradually , and keep up with what the dr says , allthough im afraid i didnt , lol i was so determined to get off the stuff , keep up your healthy eating as well as the vitamins , im over it all now so there is a light at the end of the tunnel lol good luck just wondering again after reading your note , how long have you been on the prednisone , i was on it for 2 years , maybe check with your doc hey 

     

  • christine_fay
    christine_fay Elijo

    Posted

    It is now 1 month since I stopped taking Prednisolone. I reduced dawn to 1 twicw in the past two and half years. the first time I stoped at 1 all symptoms returned after two weeks. This time although I also have pain from arthritis which thePrednisolone also helped, I have not had a relaps, even though I fell rather badly last week and tore my rib muscles and bruised my reight arm and hip I did not revert to taking Pred again. The effects of the fall mimicked a serious flare but I stuck it out and am recovering well. My right arm had become useless again just like in PMR but it improved daily and apart from a big bruise its more or less back to normal. My left boob is still quite sore but improving daily. If the improvement was not there I would believ I had gone back to square one. I am now excercising each day on a fixed bicycle and improving all the lost muscle tone. Hopefully this summer I will be walking with the dogs once again after nearly 3 years. My energy was improving a lot until the fall which had me in bed for 2 days especially as I was hiving difficulty breathing...however it was only bruising and torn muscle. I feel I am somewhat immune to pain now...just carry on as if its not there...even if it makes me cry! But I will never go back on Prednisolone...I think I would rather die. After losing teath, having cataracts and lastly being told I was diabetic because of it. Plus all the weight gain and the horrid hump, which has now gone. Let alone those nasty blisters and spots which have also now gone. My face is almost back to normal and I have lost two kilos. I no longer have sugar or starch in my diet although I probably will introduce certain types of bread again once my blood sugar has proven to be reduced. I feel quite good for a change. I do realise what benefit Prednisolone gave me after the fall as it truly mimicked the early PMR but as it improved I knew it was not the same. Without Pred I would never have been able to get out of bed most days let alone work! It has been a costly experience though.
    • Elijo
      Elijo christine_fay

      Posted

      With all of the side effects that are bothersome, pred. did give me back my life, I couln't get in the car, off the loo, out of bed, in bed, get dressed, pain and stiffness to the point of not wanting to live any more.  Many of my side effects differ from yours and in reality I woould have to choose the side effects in order to function.  However, I believe theiy can be greatly moderated with decreasing doses.  Thanks so much for your reply, and take care of yourself.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada christine_fay

      Posted

      Hello Christine,

      i am so sorry to hear about your fall but so very happy for you to be off the pred.  With all the side affects it must have been a toss up whether to take the pred or tough it out. Hopefully your journey with PMR is over for good.

      Healthy body, happy life👏👏

      Hugs,

      Diana🌸

      Diana🌸

    • Anhaga
      Anhaga christine_fay

      Posted

      I am so sorry to hear about your accident and hope that you are healing up nicely.  Glad, however, to learn that your PMR appears to have taken a permanent (we hope) holiday.  My feeling is that we can't go back to our lives even after getting better, as that will just set us up for relapses.  So it is terrific that you've found some lifestyle changes have made a difference (like reducing those pesky but delicious simple carbs!).  All the best!
  • ann18814
    ann18814 Elijo

    Posted

    Hi Elijo,

    I too think your 30mg pred is very high.  I started on 20 and went down

    2 wks later to 12.5mg for 2 days then 10mg.  After that reduction 1 mg

    per month until I got to 6mg in Jan 2015 so here I am in February 2016

    recently down to 4mg and pretty well controlled on that.   I am going to

    try and reduce again at the end of Feb.   I have listened to my body and

    used my own judgement to reduce, as  I have always wanted to reduce this horrible drug as soon as I can.

    Ann

  • Elijo
    Elijo

    Posted

    Thanks, Ann.  I do have an appt. w/ my MD tomorrow, and I have already started a reduction myself.  So far no negative signs or problems.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.