On Dead Slow Reduction

Posted , 4 users are following.

Well, I've responded to a few questions on Prednisone.  Now have one of my own.  After having been on 60 mg for Giant Cell Arteritis, moon face & all, I have now tapered down, over the course of about 2.5 years, to the dead slow method.  I am now 1mg. one day, 3 days off and shooting for 1mg. then 4 days off.  My body is aching like crazy and I'm getting some headaches which may just be withdrawal headaches, but with GCA seems one never knows.  Just wondering where to go from here?  Back to 2 days off? 3 days?  Can't stand the thought of backing up too far.

1 like, 9 replies

9 Replies

  • Posted

    If 1mg a day kept you feeling well - that is such a low dose I'd accept it happily!

    It COULD be your body craving just a bit more steroid - i.e. your adrenal glands are still playing catch-up.

    • Posted

      Yes, I guess so, but it's better to be taking no Prednisone at all and I'm going to give it my best shot.  If these symptoms are just withdrawal and will go away, I'll work through them.  Thanks for the reply.

  • Posted

    First of all, well done on coming down from 60 mg/day.  I used to be on that amount too, but you're ahead of me. Could you just help with 

    1) When did come down to your current usage (3 days off)?

    2) How did you feel when you were at 1 on / 2 off?

    3) How long do you plan to stay at each usage ?

    4) Is there any reason you want to stop steroid usage altogether or do you just want to stop taking the pills?

    It takes me approx. 2 weeks to get used to a drop, just FYI.  

    • Posted

      Sorry for delay. Am away and kindle not working well. Came Down to 3 days off about a week ago. Got down to 4 days off and took pill on 5th day and felt worse on pill than 4th day off. Off again now 3rd day again and going try to stay off. Felt ok on 1on 2 off. Just think better all around to be off if possible. . 4
    • Posted

      It sounds like you are doing really well getting down that far. I've been on steroids so long now tha if I ever get down to 1mg I think I would try 1/2mg for a few days and see how that goes. Just a thought.

      Best of luck.

    • Posted

      Sounds like you just need to give it more time. As I said, it takes me 2 weeks to get used to a new dose. As I haven't got down as low as you yet, I can't compare, but I think that once I've done 1mg every other day, the next step for me will be nothing

    • Posted

      i should add, I normally spend a month on a new dose
    • Posted

      It was taking me a month or more on new doses. I did the every other day and couldn't tolerate it. Am now day 4 off for the 2nd time and keeping fingers crossed. Good luck to you. Hope you can continue to decrease til you're off..

    • Posted

      I've been on for about 5 years altogether. First for polymyalgia and then immediately for GCA. My rheumatologist did suggest going from one to one half but I chose the dead slow reduction. Wish you the best in getting off it. Will post if I can remain off but am optimistic at this point.

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.