I posted on here a few weeks ago as my 19 year old son Adam Green had been diagnosed with AIH.
Yesterday we had a follow up consultation and he was told he has Cirrhosis stage A/B. Decompensated
Transplant may be the option going forwards.
His body isnt responding to the 30mg Pred over the past few weeks. So he has to stay on the dose for the time being. He is likely a small % of AIH patients that are not responsive to this treatment.
Transplant may be the option going forwards.
He was also told Azathioprine is not a good immune suppressor for him being a young male and high risk of Lymphoma. He was due to start immune suppresants this coming week.
They have asked him to think which other drug he wants to go with and are emailing details of them to us for consideration.
Neither seems great, we dont have names yet. But I wonder if this has happened to anyone else and also are other people on alternatives to Azathioprine?
Sorry, new to all this so I hope I've explained that ok.
Written by
MicheleG33
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I would suggest you give our helpline nurses a call. They can talk through the medication options with you and help understand the choices. Call 0800 652 7330 between 10am and 3pm Monday to Friday (excluding bank holidays) or email helpline@britishlivertrust.org.uk (emails can be sent at any time and are answered during helpline hours).
It took me a while to get my blood levels down when I initially started on Pred so he may be a slow responder but as I remember it was several weeks before I started on Azathioprine on a low dose increasing gradually as I reduced Prednisolone.
Azathioprine is usually prescribed alongside the tapering down of the Prednisone/Prednisolone so it takes the weight of immunosuppression as the Pred is withdrawn. If Azathioprine is unsuitable or not effective enough then usual treatment is to go to the next line of treatments - last I remember Tacrolimus was one - essentially immunosuppressants slightly more attuned for organ rejection. I remember discussing these fairly early on when my blood levels remained stubbornly high but as it takes about 12 weeks for Azathioprine to get to its optimum level we persisted with that and eventually things improved.
So wait to see what he's offered and why. Obviously feel free to mention it here to get perspectives but the clinical team should be the first line of authority.
One thing I will ask is where he is being treated? Given his condition I would suggest it should be a specialist liver unit under the care of a hepatologist. King's has an AIH clinic - although I've always been seen in one of the General clinics - and therefore a huge amount of expertise in this area. I know other specialist hospitals - ie transplant centres - have AIH clinics as well so at the very least it may be worth asking for a second opinion from one of them if not an out and out referral.
Best wishes.
PS - Cirrhosis is unfortunate. The A/B usually refers to Child-Pugh measure of "closeness to transplant". A is the bottom. Obviously with signs of decompensation he'll have some category B characteristics hence the A/B rating but that may reduce down to A once immunosuppression starts to work. You have to keep the prospect of transplant in mind at this stage but it may not be as immediate as it may seem right now. The priority will be to reduce the inflammation and see what happens then - which may even be crossing back to a compensated stage.
As always you give such a positive perspective and so much useful info and I am extremely grateful to you. Will get my son to read the reply as always. Much appreciated 😊
Gastroenterologists often deal with liver issues long term and I'm sure he/she's an excellent doctor but given the diagnosis I'd have a chat with your GP about getting a referral to a Hepatologist, preferably one with an expertise in AIH.
Having said that the treatment pathway is fairly standard - ie immunosuppression first and try to get a biochemical response - ie a reduction in liver enzymes - so I don't want to leave you with the impression you're getting substandard advice. More that it's going to be a long road and if I were you I'd want to be at a centre with a decent amount of expertise in respect of AIH.
I can definitely definitely recommend Kings by the way.
Hi Michelle. You've had excellent advice. He sounds a slightly complex case. My guess is possibly not best served by a gastro who mainly treats viral hepatitis and does colonoscopies. I would explore the feasibility of a transfer to a transplant centre, where they have expertise in the drugs used for AIH, particularly those such as Tacrolimus etc. Either Kings in London or Addenbrookes in Cambridge are probably the closest to you. Best of luck
Hi. I have AIH and was treated by King’s. They are a superb team of professionals. If you have the opportunity to please consider being referred to them. Best of luck.
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