Steroid reduction/withdrawal

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hi,

i am currently trying to reduce prednisolone by 1mg every two weeks, I am experiencing severe tiredness and lethargy and a general sense un-wellness. I am also experiencing shortness of breath( I don't fell like my lungs will open up enough). 

Does anyone else experience the shortness of breath when tapering?

thankyou very much

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8 Replies

  • Posted

    Hi Steve, sorry to hear of your experience, however, it is very familiar.

    What dose were you on and for how long?

    Once you reach 10mg/day, you will probably find that you need to taper extremely slowly, more slowly than 1mg/fortnight.

    When I was doing it last year, I went down something like 1gm/month and at various points, even stuck at the new dose for more than a month.  It can be a bit of trial & error.  You may have to revert to the previous dose you have been at  for a while, then try again.

    Have you spoken to your Dermatologist about this?

     

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  • Posted

    Hi mrs mop,

    i was started on 40mg on May 9th this year for 10 days then had to drop by 5mg per week, but when I got to 20mg my symptoms of withdrawal were extreme and I had to stay on this dose for 2 months until now where I am dropping 1mg every two weeks, I also take 100mg azathioprine.

    i have spoken to my specialist about this and his suggestion was the 1mg every two weeks. Did you experience shortness of breath.

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  • Posted

    I haven't experienced shortness of breath but have had other adverse effects.

    I wasn't able to take Azathioprine but took Methotrexate first and was successful with my tapering but I am now bank on Pred & also Mycophenolate Mofetil and 'stuck' on Pred 15mg

    You nay need to speak to your Consultant again & possible try tapering by 1mg a month, or longer.  I know that that is the sort of regimen that my Consultant suggested.  

    I must say though, that I was never on a higher dose than 25mg - each doctor has his own idea!

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  • Posted

    Hi  Steve,

    I was on 60. Have GCA.  Been two years coming down.  Got down to 2 after going up and down a couple of times.  Two was the worst for me...tired, tired, tired, felt miserable and also had occasional shortness of breath and headaches.  Went back up to 4 and feel much better.  Check with your doctor about going back up a mg or two.  Seems reducing 1 mg. every two weeks is too much.  I know we're all anxious to get off the stuff, but the lower the slower the reduction should be is my understanding.

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  • Posted

    Many thanks for your replies, the information is greatly appreciated.
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  • Posted

    Hi Steve. I have also been on a fairly high dose of prednisolone and am now tapering my dose. When I got to 10mg per day I then went to 1mg per fortnight reduction and been having a tough time. Really tired and I also get aching joints. I have also been experiencing shortness of breath, which involves me having to spontaneously "gasp" every so often. Ithink it's just another steroid thing. I am also on 100mg of azathioprine per day. i was on more but my liver couldn't tolerate it. May I ask why you have to take the steroids?

     

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  • Posted

    Hi Gridders,

    I have got igg4 related lung and pleural disease, so I'm getting out of breath anyway because of that but when I taper steroids I get worse breathlessness and I'm just trying to work out if it is the reduction of steroids causing it or the disease itself. I have got to up my azathioprine when I reach 15mg of pred to 150mg aza.

     

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