Budeonside advice?

[Sweetpeesue]

Hi all! Looking for some advice, I was diagnosed with Aih last year but liver results are still elevated so docs have decided too put me on Bude, they say it has less side effects, any advice is grateful.

[bleeny]

Hi. I was put on Budesonide before Christmas. I have had no side effects whatsoever and now feel really well. However, I don't yet know whether it has been effective in lowering my ALT. I certainly feel better!

[Sweetpeesue in reply to bleeny]

Thankyou! Bit freaked out with it all tbf.

[AyrshireK]

Hi Sweetpeesue, if you do Facebook at all there is a fantastic Auto Immune Hepatitis support group on there - over 2800 members from all round the world. It's UK based with the moderators all being AIH patients themselves and the group is supported by many of the top doctors in the UK who are working in the field of AIH treatment and research. You'll find them (us) a welcoming and supportive bunch. People at all stages of diagnosis from just diagnosed to post transplant and everything in between plus loved ones and carers such as myself. Experiences of all the meds commonly used in AIH and the alternatives if some don't work.Bud is generally regarded as having less side effects than the more commonly used prednisolone and the fact you're on bud must mean your condition isn't too far advanced as it isn't indicated as treatment when a patient has cirrhosis so that's all good.

If you want to find the Facebook group it's at :-facebook.com/groups/2293328... It is a private group so if you do Facebook none of your other contacts or friends see anything that is posted on there on your feed.

All the best, Katie

[Sweetpeesue in reply to AyrshireK]

Thankyou, great information.

[Oceanspray in reply to AyrshireK]

Hi AyrshireK-I have elevated liver enzymes, then hep panel plus other blood work, ultrasound, and most recently a liver biopsy. My blood work and biopsy results don’t match, meaning blood work all showed negative, but biopsy shows “moderate” inflammation and “moderate” scarring.

My dr says it’s a mystery, but “best guess” is autoimmune hepatitis and wants to start me on prednisone. I’m reluctant, but will do if no other option. I would really like to get to root cause. Meanwhile I’m getting a second opinion and also have an appt with a functional medicine dr to see if perhaps leaky gut or some other intestinal issue is the culprit.

Long background to get to my question. The Facebook group you mentioned sounds like a great place to get some good info and maybe some suggestions on options. However, I have recently dropped FB - and wonder if the group has found another platform or is duplicated elsewhere. Thank you in advance!

[AyrshireK in reply to Oceanspray]

The AIH support group does have a website but all patient to patient support is done only on the Facebook group now. Website is at :- aihsupport.org.uk/

[Bluegirl52]

I was on Budesonide for a completely different reason. I have lymphocytic colitis, an uncommon type of inflammatory bowel disease. Also called microscopic bowel disease. Anyway I have an over abundance of white cells in my colon which I assume is like an autoimmune problem. Anyway, I had no side effects and put me in remission for over three years! Then I got Covid in November and the colitis reared it’s ugly head again. Covid can do strange things, we are finding.