Reducing my steroid

[Sailormo]

Hi I'm an old member, I've been trying to reduce my steroid fo a couple of years, as soon as I get down to 12/13mg the pains really get bad with bad headaches and ppain in my thighs, I've been taking some azathioprine which I've had to stop taking because of my liver function not being right,I really lost interest in trying to help myself and need abit helpful banter I know you've helped me a huge amount in the past,waiting to hear back from my specialist nurses but you need to have advice from someone who has pmr. A big Thanks.

[DorsetLady PMRGCAuk volunteer]

hi,

Sorry to see you are in this predicament again - as you are having the same problem repeatedly at similar doses I would question whether it is only PMR.

Your mention of headaches in this post MAY indicate GCA (hope not, but one always has to consider) -and I would be asking your medical about that. It may not be, but if the headaches are a new feature then they certainly need checking out.

Please keep us informed -and hope you get further investigation into what’s going on

[PMRpro Ambassador]

Originally, it took me 4 years to get reliably below 10mg. I did then get to 5mg, for nearly 2 years but then had another flare about 6 years ago with an increase in disease activity and was back to 15mg. During Covid and subsequently my husband was ill and the physical and mental stress resulted in me hovering above 15mg to keep going, I was up to 19mg at times. He died a year ago and initially I was doing well and the pred was down slightly - until the early spring when everything imploded. My rheumatologist has put me on tocilizumab - and for the first time for about 8 years I am below 10mg. The PMR is definitely still there - attachments around the joints are still ouchy when he pokes them - he has a gift for finding the exact spot!

It may be that you are like I was at the start and you have struggled from the outset haven't you? I do hope you don't follow my pattern much longer though.

[Koalajane]

hi, sorry to hear you are struggling.

Have you spoken to your GP or rheumatologist, as I think you need some help, especially with having headaches

[Sailormo in reply to Koalajane]

hI thanks for your advice my specialist nurse got back to me today,after speaking to my Rheumatologist I'm going to try some new medication I've forgotten what it is but I'm off the azathioprine,I did put my steroid upby 3mg and I do feel better I didnt say I had Icouldnt stand the aches and feeling unwell any more