Steroid reduction/withdrawal

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?

 

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.

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!

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.

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

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?

 

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.