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Second week if steriod reduction

Posted , 14 users are following.

julia85224
julia85224

Hi, all,

Last week reduced steroids from 12.5-10mg,

and many of you kindly answered my questions as I was feeling quite ill.

Second week now and have had a bad headache, my Consultant doesn't think it is Gca, relief, but I explained the symptoms I had last week and he isn't convinced I have

Pmr.

He said reducing steroids from 12.5-10 should not make feel ill, and as my bloods are normal, he is going to take me off steroids quickly.

Totally confused.

I see him Thursday and I am not happy.

Please advise if you can, does anyone have similar symptoms to me when reducing, ie fatigue, aching, and unwell.

0 likes, 33 replies

33 Replies

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  • chrisforever
    chrisforever julia85224

    Posted

    Julia, I contacted my gastroenterologist about the fact that, following coming off steroids, I always had a sudden hit of abdominal pain and diarrea followed by several days of headaches.   He said it most certainly could be to do with the steroids.  Even if I wean myself off, I still get these withdrawal symptoms.  First I mentioned it to my chemist and he said I'd probably got diverticulitis.  I won't be asking him for advice again!

  • maid_mariane
    maid_mariane julia85224

    Posted

    Hi Julia

    I started on 20mg September 2015 and my first drop was to 17.5mg over a 8 week and had a hell of a time but after 1 month i started to level off.

    I am not a fan of my rumi but she does know her stuff when it comes to pain management and reduction. (Terrible bedside manor ) I now reduce only by 0.5mg and she thinks that's great, i was willing to try 1mg but she insisted.0.5mg. She feels better something than nothing, now at 16.5mg with long tapper.

    I get headaches sometimes but mainly at the beginning of first on prednisone.

    Each time I've reduced l get some of my initial pmr symptoms back but not as drastic thank god but once at the new dose it takes me about 2 months to stabalize.

    I hope this helps, good luck.

    Mariane Canada

  • nick67069
    nick67069 julia85224

    Posted

    Julia, why don't you try to go back to 12.5 for a few days? If your symptoms are from reduction, then they should go away. If that is the case, then you should reduce in smaller steps, maybe 1mg at the time.  In any case, you will know the answer before you see your consultant and have more productive appointment.

    • chrisforever
      chrisforever nick67069

      Posted

      If I take 5 mg for five days, then stop, I sometimes get the same nasty symptoms.  It must depend on our own stomach sensitivity. 
    • Sheilamac_Fife
      Sheilamac_Fife nick67069

      Posted

      Sounds great advice to me! 

      never forget this is YOUR body your symptoms are King! You and your Rheumie have to be guided by them.

       

    • Tastyron
      Tastyron chrisforever

      Posted

      Why would you take 5mg for 5 days and then stop? It goes against all advice I've heard.

    • chrisforever
      chrisforever Tastyron

      Posted

      My GP prescribed it as I had breathing problems with my bronchiectasis.  He said that, even after three days of 25mg (which he sometimes puts me on) they don't believe it necessary to reduce.

    • ptolemy
      ptolemy chrisforever

      Posted

      That is correct, you can just stop taking pred if you have only been taking it for a week or two. I assume you do not have PMR if you only took pred for such a short time.
    • chrisforever
      chrisforever ptolemy

      Posted

      No, I'm sorry I thought this was a site dedicated to prednisilone withdrawal. That's how I got onto it.  I feel a bit of a fraud.  I have lung disease and take pred when I have trouble breathing (through a virus or something).  So, sometimes, short doses are all I need. 

    • Anhaga
      Anhaga chrisforever

      Posted

      In a way it is a site dedicated to pred withdrawal - but for PMR sufferers who have all been on pred for long enough that the adrenal glands have gone on holiday! 

  • diana21296
    diana21296 julia85224

    Posted

    I agree with Nick here.  Go back to 12.5mg for a bit and see if you are feeling much better, then reduce  much more slowly per month with far less bad syptoms.  Good luck.
  • Tastyron
    Tastyron julia85224

    Posted

    So you are getting pain and fatigue when you reduce your dose and your "expert"  tells you to reduce quicker. The more I read on these forums the more I'm tending to just ignore what the professionals say and carry on with my own program for managing this illness. I know how I feel and can adjust accordingly. Nobody wants to be on steroids but they are being used to help us with managing the pain and stiffness and therefor are an important measure in our recovery. 

    Personally I have just reduced from 12.5mg to 11.25mg slowly. (Alternating daily from12.5mg to10mg as I haven't got 1mg pills yet). I'm feeling stiffer than usual so will see how this week goes before staying here or going up a bit.

    My Rheumy tried to put me on Alendronic acid (spelling?) to help with my bones. I mentioned that I hadn't had a Dexascan scan and she told me that they don't do them! She wanted me to take MTX because I was having trouble reducing my Pred. At that time I had gone down from 25mg to 15mg in 4 months and thought it was going fairly quickly so I tend to just do my own thing.

    Good luck with your journey and read everything on here as you'll get more pertinent advise here than anywhere else.

    Ron.

    • nick67069
      nick67069 Tastyron

      Posted

      I am not sure if it will work for you, but what worked for me is splitting the dose in 2 - late night and early morning. I was at 15mg level, then I reduced to 12.5 with no problem and withing a week rheumatoligists wanted me to go to 10. So afer about 10 days beiing at 12.5, I went to 10 but at the same time I split my dose in morning/evening. I took 5mg very late (1-1:30AM ) and another dose of 5mg about 8AM. Transition from 12.5 to 10 was gradual usingDSNS menthod ( short version that starts with 1new-3old; 1new 2old, etc). I had no problem at all.
    • Tastyron
      Tastyron nick67069

      Posted

      Cheers Nick. I already split my dose am and pm when I got to 15 mg and I tend to go 1 new, 5 old,1 new, 4 old etc.  

      I've been staining the wood on a couple of stables over the last three days so I'm pretty sure that it could be the main reason for the stiffness this morning but will monitor it. One tends to be very body aware these days.

      Ron.

    • nick67069
      nick67069 Tastyron

      Posted

      Hi Ron. I try to be very careful during the transition time, to distinguish between steroid induced symptoms and the rest of the stuff ( like home projects or new exercise ). Try to keep it steady at least during the first half of the transition, which for me was always more difficult.
    • Tastyron
      Tastyron nick67069

      Posted

      I keep a diary which I find to be a great tool for me. I jot down my dose and the time I took it, anything that can affect me, long drive, DIY, gardening etc.i also write downing aches or pains that I have. This is all done in very few words, only takes a couple of minutes.

      Reading back over it shows me what patterns there are between exercise, 

      tapering, diet and general life problems. What it shows me is that I start to reduce only when I feel well, good practice. Unfortunately, because I feel well, I do the jobs that I can't manage on the off days. It just means that I'm learning to pace myself and have plenty of breaks rather than my normal bull in a china shop approach.

       

    • nick67069
      nick67069 Tastyron

      Posted

      I also keep a log of time and dose and any anusual symptoms. I have separate detailed log of my activities, so I can go back and do analysis, if needed.  In the begining I kept the records for rheumatologists to help me explain things better. I also bring list of questions with me, so I dont miss somehting. On the other hand, he prints the test results, marks any items he wants to talk about and at the end gives me a copy to take home. All this  makes my appointments more productive.
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