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Prednisolone withdrawal side effects

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jill18540
jill18540

Hi, I'm a new member and wonder if anyone can give me some info about the side effects of withdrawing prednsiolone at the lower doses.  I have a lung condition called crytogenic organising pneumonia and have been on Prednisolone for a year now gradually reducing from 40 mg this time last year to 3 mg now.   The reduction had been quite rapid without too many side effects until I got to about 10 mg and then I started to get really bad muscle aches and also stiffness although it started out on the right side only,  I also get neuropathic pain on that side because of a trapped nerve  so sometimes its difficult to distinguish between the two.   The plan is to try and reduce them and stop by the end of December. Reading the other posts, I realise that I've got away lightly compared to some people.  What I really wanted to ask is if it's normal to have pain in different areas on different days, i.e., sometimes I've got pains in my knees, sometimes my upper legs, sometimes my lower legs and so on?  Its started now to come on in my arms as well.  Do you reckon this is due to the steroid reduction or something else?  I've also heard that the withdrawal symptoms can continue for several months after stopping the steroids completely?   Anyway, thanks for any ideas x 

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  • anne51478
    anne51478 jill18540

    Posted

    Hi all

    I have been on predisolone since 2015 for an autoimmune condition affecting my eyes, called Birdshot.

    I was then prescribed Humira and Micophonolate in Feb 2019 so am now weaning off the predisolone slowly. I was down to 7.5 mg a day for ages having been on very high doses previously and was advised by doctors in August last year to come down further by 1mg a month. It was fine until I got to 5mg in Oct then the aches and pains really kicked in. I am extremely tired and feel like I have flu all the time. In December I was down to 3 mg. I have pins and needles in my hands too, shoulder and neck pains. I ache all over.I was able to garden with no problems whilst on higher dose but now its a real effort.I had no idea what could be doing it and thought that the steroids were just masking age related aches and pains. I have read the posts here and have decided to go back to 5 mg and then go down to 4.5 and reduce much slower. Will speak to doctors when I see them this month. Good luck to you all. Its not easy.

  • alicia60334
    alicia60334 jill18540

    Edited

    down to 2 mgs/day.. anyone else gave cold hands and feet?? getting wirse as i taper so assumed its the taper but maybe im wrong

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