Auto Immune Hepatitis & Prednisolone

[Blueboy500]

Hi

Does anyone know how long you can safely stay on 5mg of Prednisolone?

I’m a 60 year old man & was diagnosed with AIH in Sept 2022. I was treated with daily 40mg of pred reducing to 5mg before stopping 6 months later inc stopping the mycophenalate that had caused colitis. I flared badly quite quickly & have been on 3 mg tacrolimus prolonged release since June 2023 & 40 mg Pred again that eventually reduced to 5mg in March 24. My consultant doesn’t seem concerned with this long term dosage or want to risk lowering the Pred. When I started the Tacrolimus it was meant to be for less than a year, now it seems it’s permanent? Anyone else in this situation & thoughts on long term use of this & the Pred?

Thanks

[AyrshireK]

My husband has been on 5mg prednisolone for Auto Immune related cirrhosis since 2014 (it's now classed as a maintenance dose).

Although he had cirrhosis he'd never had any symptoms of the underlying AIH so it had been doing damage without being picked up so his consultant kept him on it to deal with any small flares that might be happening without symptoms. Even though he had a transplant this year he will remain on 5mg probably for life now as his body may not make it's own having been on it so long. (He takes a calcium, vit D supplement to counteract any calcium stripping properties of pred. and omeprazole as a stomach protector and has a DEXA/bone density scan every 5 years).

Katie

[Blueboy500 in reply to AyrshireK]

hi Katie

Thanks for this, it reassures me! I too am on Omeprazole 20 mg & Adcal D3, I also had a bone scan a year ago. I tried to reduce my my Omeprazole dose to 20 mg alternate days but it caused nausea ( prob from tacrolimus) so went back to daily. What dosage of Omeprazole is he on.

Martin

[AyrshireK in reply to Blueboy500]

1 x 20mg tablet, twice daily. Post t/p they reduced it to just once daily and he got reflux at nights so they increased it and he takes one at breakfast and one at tea time.

[Blueboy500 in reply to AyrshireK]

thanks. I was on 40mg once daily & they dropped it to 20mg about 10 months ago, so will stick with that.

[Janettewhitelaw in reply to Blueboy500]

Hi I took uviytus over a yr ago inflammation of the eyes I was on 60 mg presiterone a day for this I took pain in eyes and headaches I was in hospital one week I later found out it was side affect to tablet change. It to hydrocortisone I also took imune system problems was on the steroids for over a yr have just finished taking steroids it started six a day then slowly reduced to 30 mg then I took another flare up put them back up to 30 mg I’d been down to 5 mg a day thought I’d be on short term I’d just had cataraqh surgery as well on one eye but it was oppososit eye took inflammation in they said nothing to do with cataraque op but got second eye done eight weeks ago while still n steroids and had same symptoms was given steroids a week ago for chest infection six a day for five days to day I woke with eye pain and headache must be side affect for me from predisamone phoned chemist they said finish course two days left and tell *gpp I’ve not to get these tablets again I put on three stone in weight with them and felt unwell all time anxiety through the roof and self harm thoughts as I’ve got mental health problems they gave me physiatrist nurse home visits the steroids affect your moods it was a hellish yr the cataract op worked can see more clearly but the side affects were worse no pain at all after first eye they said should be no pain with second but there was it was still worth getting eyes done but don’t like steroids sorry about spelling I also got confused with steroids my memory affected to soMetimes you don’t know what’s for the best when steroids give more problem than you started out with.

[Blueboy500 in reply to Janettewhitelaw]

Thanks Janette, you're right, steroids can cause more probs, that's why I'm keen to reduce them, but guess there is a balance between controlling my AIH and the desire to cut out steroids.

[Oldbits]

Hi blueboy500, Katie has given you a great answer. There is only one thing I can add. My hubbie also has AIH and is nolonger on Prednisolone as it seems to be in remission and his consultant doesn't seem overly worried. But he did get steroid cataracts in both eyes. They form very quickly unlike usual cataracts. He was 56 years old and never thought he'd get them. So I would suggest that keeping an eye (excuse pun) on your eyes with regular check ups might be helpful.

[Blueboy500 in reply to Oldbits]

Hi

Thanks for this, I wear glasses but not had them tested for about 18 months so will def get them checked. Good your hubbie in remission, I had a very bad flare that caused more damage & so the consultant has said I need to stay on medication… I hope this may just be the immuno suppressant.

Thanks again for advice

[JumpJiving]

@BlueBoy - The longer you are on prednisolone at or above the physiological equivalent daily dose (the range has recently been reduced to 3-5mg/day in NICE guidelines) the greater the chances of steroid-induced adrenal insufficiency developing (technically known as tertiary adrenal insufficiency, but often referred to as secondary). Adrenal insufficiency is not a fun thing to have (I have it as a result of using a steroid-based asthma inhaler), but it's a balancing act - steroids can make a massive difference to other conditions, so the risk of adrenal insufficiency may be a risk worth taking. Ideally, GPs would monitor anybody on long-term steroids for this and other conditions, but this doesn't routinely happen.

There are other effects from long-term steroid use, including osteoporosis, cardiovascular issues, stomach lining issues etc. Improving diet to reduce LDL cholesterol, improving diet to increase calcium intake (or supplementing calcium and D3), doing weight-bearing exercise, and taking a -prazole can all help.

[Blueboy500 in reply to JumpJiving]

Hi

Thanks for your reply. I understand your points & you’re right re steroids, this is what concerns me. I’ve already got stomach lining issues ( an endoscopy showed this) so as well as the Omeprazole I take Famotidine for a month every few months. Thankfully my bone scan was normal. I will speak to my consultant re getting the dose down. Thanks again for your thoughts.