About a month ago under the so called supervision of my consultant I started reducing Prednisolone which I take for AIH. I was originally on 50 mg when I was 14 and tapered down to 5mg after about a month which I was fine with, 11 years later I have reduced by 1mg weekly and feel completely awful. Headaches, shakes, joint pain, muscle pain, weight loss, extreme fatigue, nightmares, sweats and problems with eyesight are only some of the symptoms I have been experiencing. After the first drop I emailed my consultant to ask if this was withdrawal, he said it can be- (very helpful) he has ignored my emails since. Spoke to the gp a few times they told me I must speak to consultant as he is the one who advised this. I am being made to feel like a hinderance and do not know what to do. I am completely off the steroids which is great but feel awful still I was just wondering if anyone has experienced this and how long it takes to feel somewhat normal again? is there anything I can do to ease it? I should add I have been having blood tests weekly under gp supervision and my LFT'S are normal. Any advice or experiences would be much appreciated, thank you.
Hi I'm new to this but is there any wa... - British Liver Trust
Hi I'm new to this but is there any way to cope with Prednisolone Withdrawal?
Hi
Have you had your blood sugar tested? I was put onto 40mg a day and it gave me severe steroid induced diabetes. I had the same symptoms as you. It is one of the side effects, so I recommend you get your blood sugar and ketone levels checked out.
I haven't actually I will get this checked thank you
Hi,
It is important to get very clear clinical advice from your consultant about this. If they are ignoring your emails you may want to consider raising this with your GP and request that they help in trying to reach your consultant. Your GP has a duty of care to help you.
Good luck.
Thank you
You've been on the meds for some time and it might be that you can't taper too far because your body may no longer be able to make it's own cortisol and if that's the case you may need to remain on a maintainance dose - my hubby is on 5mg Daily and I know quite a lot of folks on the AIH page on Facebook are the same.
What dose have you gotten down to?
Katie
Thanks for your reply, I was on the 5mg for 11 years and dropped 1 mg a week for 4 weeks I am completely off now. I think it was way too fast which is why I've struggled so much, did your husband struggle to get down to the 5mg?
He was only on 20mg and for a very short time and his phasing down was pretty short. He has 'burned out AIH' so never flared/no obvious inflammation - he already had cirrhosis before we knew he had an issue.
Hi Purple, totally agree with all the comments above, but would add that reducing by 1mg a week, especially after such a long time, seems very quick. I reduced from 40mg to 5mg over about a year, and then he said to go to 4mg for 3 months, then 3mg for a further 3 months! But when I went from 10 to 7.5 to 5 to 4 to 3 I felt awful for about a month each time - all the symptoms you're describing. They did go eventually (though now I've had a flare and back up to 10mg dammit!), but dropping the 1mg at a time was far worse than the bigger amounts for some reason. Hope you can get some answers - good luck!
Thank you I also thought was very quick, I was expecting to be tapering over at least 6 months. Hope you get off the 10 soon, best wishes!
HiMy GP explained it to me like this:
our bodies naturally produce cortisol - about 2mg a day - but when we are put on high doses (I started at 60mg in hospital to get my AIH under control) the adrenal glands say to themselves, OK I don't need to bother any more as there is plenty there anyway. Then, as we taper down, the body gradually gets used to having a supply of artificial cortisol and still is not too concerned. However, when we get down to about 5mg the adrenal glands start to take notice and begin to wonder if they should help out a bit. But it takes time, so that last 5mg should be reduced very gradually, more like 1mg a month rather than 1mg a week.
This worked for me and I have been drug free for the last 18 months with no problems. However, it is always possible that your kidneys (to which the adrenal glands are attached) may be somewhat under par and unable to produce cortisol for you, in which case you may need to be on that maintenance dose of 5mg anyway.
Thank you very much for this explanation this is more than I've been able to get out of my consultant. I think I'm going to end up back on the 5mg and perhaps reduce much slower. Very frustrating. Pleased to hear this worked so well for you! best wishes.
I've only been on it for 4 months. You've been on it quite a while. I've been reading lots of medical stuff about pred over weekend.
Prednisolone is a synthetic cortisol, which is a hormone produced by your adrenal glands, & is so powerful it replaces the cortisol your body naturally produces. Thats the problem when we stop pred - we are not producing our own cortisol & I dont know how to get it working again. I think pred affects the functioning of the adrenal glands.
I'm not a medical person so take this👆 with a big pinch of salt
I found this helpful:
healingwell.com/community/d...
Take care 😊
Thank you for the link so much info on there! Best wishes 
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