Steriod Tapering I have AIH

[Eternity6]

I have Autoimmune Hep and am on steriods I’m currently tapering down from maintenance dose of 5mg in stages 3 months at a time, currently on the second month of 4 mg, and feeling so tired ! Anyone else like this! Been on steriods 14 years

[AyrshireK]

Hi Eternity, reading back some of your earlier posts it appears you've tried tapering from the 5mg before but always felt rough whent getting down to 4mg. It may be that your body can no longer produce it's own cortisol after such a long time on steroids. You should have another chat with your specialist re. checking your cortisol levels.It may be that you are in the cohort who never completely manage to come off steroids - 14 years is a long, long time to have been on them.

Katie

[Eternity6 in reply to AyrshireK]

It does seem a long time doesn’t it! Now today I’ve been for two short walks only like 15 min ones , and I don’t feel as tired, now I know it’s very early in day but I’m keeping fingers crossed! But I haven’t done much housework so no hoovering etc maybe by taking it easier is the key

[Limalama]

Hi Eternity6, I also have AIH (with PBC overlap) and found tapering down those last few mg really hard - unbelievable fatigue, joint pain, brain fog etc etc. It seems like it's a pretty common problem for many people and as Katie says you've been on pred a long time. I'd got down to 3mg but then had a flare so went back to 10 and now back to 5, enjoying that little kick of extra energy while it lasts 🤣. But I'd got past the fatigue on 3mg, so it might just be a question of time. If you're on Facebook, have a look at the Autoimmune Hepatitis UK page (you don't have to be in the UK and other FB friends can't see that you're a member of it). Like this forum, you'll be in a safe place with people who know exactly what you're talking about and this issue does come up fairly often. Good luck! Louise