Prednisolone drop

[Eternity6]

I’m on maintenance dose prednisone for AIH and I’m wondering wether I could safely drop slowly of course to come off steriods completely been on them 13 years, as I haven’t seen my consultant for 9 months I’m hoping he will let me have a go , I can’t tell you my ast or alt as I don’t know it at present, I have lost 2 stone since start of April this year all intentional and feel hundreds times better than I did, the last time I tried to step down from my 5mg dose which was several years ago I felt so ill after only getting down to 4 mgs

[Eternity6]

I should have said I won’t be dropping steriods without his agreement, I just wondered if anyone had been on them for several years lost weight felt better and was allowed to drop the dose

[AyrshireK]

This is absolutely something you need to discuss with your doctor. The whole point of a maintainance dose is to keep any underlying (but not obvious) inflammation in check.

Often when you've been on steroids for so long it isn't possible to come off completely because your body develops adrenal deficiency and can no longer produce it's own prednisone and that's when you get symptoms when dropping from 5mg ALSO with inflammation not 'in check' you could potentially flare with your AIH but as I say this is something you absolutely MUST check with your doctor.

My hubby is on a maintainance dose of 5mg because his AIH was silently doing damage for years and it wasn't until he had cirrhosis that it became known he was ill. His 5mg is keeping that silent inflammation under control. He isn't on an immune suppressant because his AIH is actually deemed 'burned out'.

Katie

[Eternity6 in reply to AyrshireK]

Thankyou very much Katie. Yes I was never going to taper down myself with out asking my specialist, I know that I have cortisol checks and I presume I’m due again as last one was around 6 years ago , and my adrenal glands were under par I don’t know to what degree, I have few questions to ask my specialist when I eventually get to see him

[MisterX]

Absolutely something worth discussing. I was on steroids for 6 years and then came off tapered off completely but very gradually - last couple of years on AZ monotherapy.

You definitely can't just drop them though - it would have to be a long taper if it's feasible or advisable.

Best of luck.

[Abercaxi]

Hi Ruby,This is something you need to discuss with your consultant. I’ve been on maintenance 5mg for a year and I am, from Monday reducing by 1mg a month on the advice of my gastro. I wouldn’t do it without advice from your team.

[Eternity6 in reply to Abercaxi]

No that’s what I said a couple of times on my posts I’d love to be able to try and reduce down but wouldn’t ever do it myself without consulting my specialist good luck 👍 let me know how you are doing will you please wishing you all the best.

[Abercaxi in reply to Eternity6]

Thank you and good luck to you too

[ANU64]

Hi,I am new to AIH myself .I am on the lowest dose as well now 5mg I also have adrenal hyperplasia that I was born with so steroids always make me feel better as I have low cortisol readings now and then due to this.You're doing the right thing waiting to see the consultant I can phone the GI nurses at the Victoria hospital in Kirkcaldy if I have any queries about anything then they pass it on to my consultant and get back to me.Don't be frightened to phone.Great that you have lost weight.I usually lose weight when I am only on 1 steroid but I have to say,I have gained a stone during the last 3 months and looked like a chipmunk too !! I also take Ad Cal for my bones and Azathioprine 75mgIf the steriods make you feel better me personally,I would stay on them Hope this helps you a wee bit.My bowel perforated 12 years ago through Ulcerative Colitis which I didn't know I had and that is inflammation of the bowel so I have had quite a lot of experience with illness,so my motto now is if something isn't broken don't try to fix it.Take care,look after yourself.xxx

[Eternity6]

Thank you ANU64 I’m hoping to see my specialist within the next 12 weeks last time I saw was year ago almost

[ANU64 in reply to Eternity6]

Phone the consultants secretary,explain your thoughts and you never know they might bring an appointment forward for you. Are you in Scotland. Xx

[Eternity6 in reply to ANU64]

Not not in Scotland , not far from london

[ANU64]

I don't know how they work in England but I do know you won't get if you don't ask darlin. If anything I have learnt. It's your body,you know you're own body,you fo what's best for you. Xx

[ANU64 in reply to ANU64]

Sorry you do,think I'm needing an optician as well. 🤣

[Flowergirl24]

Hi RubyWood6.

Be very careful when and if your Dr decides to put too on a lower dosage of Pred. I was on a very high dosage and slowly reduced to 5mg a day after about 18 months. It was decided to finally stop and I was fine for a few days then huge fatigue kicked in as though I had gone backwards. Re started at 5mg with a very very slow reduction over 6+ weeks from 4 to 3mg a day. I had a Short Synacthen test and my adrenaline insufficiency was almost zero! 12 months later, I’m still on 3mg a day at least until my next test.

Good luck

CK

[Eternity6 in reply to Flowergirl24]

Did you, I’ve been on 5 mg for a very long time and years ago I stepped down it took a few weeks to get to 4 but back I had to go as like you I felt really out of sorts, I’m going to see what he says when I eventually get to see him ( whenever that is ) thanks for letting me know hope you are doing ok

[192orchard]

I got mine reduced a few weeks ago to 2.5mg - so early days. I will watch out for my next blood results. I rang my consultants’s secretary and asked if she could see if I could lower the dosage and I have written to him before re medication. Within a couple of days I was told I could reduce, Worth a try as 9 months is a long wait. I did a little warning letter from him though, along the lines of risk of rise in inflammation. Good luck.

[Eternity6 in reply to 192orchard]

Thank you 192 orchard how are you feeling on your lower dose that’s fantastic, I have lost weight two stone and I’m feeling really good I have cut all the junk out of my diet since April this year. And exercising etc more , that’s y I thought oh I wonder if he will let me reduce slowly, yes 9 months feels forever since I’ve seen him, Ru in U.K. ?