Hi everyone, my CT scan result was back yesterday and my consultant phoned me. He thought he had a biopsy place for me today, but he’s decided I shouldn’t take it up. There is a complication. The scan shows I’ve had AIH for longer than I (or anyone) suspected and the scan shows I also have cirrhosis of liver. I’m devastated!
I need to fly to Canada (from uk) on Tuesday for a family occasion and the consultant thinks it’s best to wait till I’m back for the biopsy since treatment will need to be carefully monitored in view of the cirrhosis.. does anyone else have AIH and cirrhosis and if so, what stage cirrhosis and what meds etc are you on.
Not a lot of sleep last night and I feel pretty distressed.. thanks for being there .. Padders
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Thanks Lynne. You’re a star. I appreciate all the support I’m getting from the forum. There’s light ahead for me with my trip away. It will be nice to be able to let it go for a while and visit old friends again. Look after yourself too. Padders
My husband had sustained full on cirrhosis before his liver condition even came to light. He presented in April 2012 following a massive bleed from burst varices.
Two biopsies proved inconclusive for cause as he has/had no ongoing inflammation showing in samples. His diagnosis is cirrhosis due to burned out Auto-Immune Hepatitis. As he has no ongoing attack on his liver and his immune system is not attacking his liver. His treatment is 'just' 5mg of prednisolone daily to counteract any small AIH 'flares'. As he has never had symptoms of AIH prior to diagnosis they are unsure of when it all began or what caused it and it's possible he never had the massive flares with highly inflated inflammation levels that some people have.
His main treatments now are just to keep on top of the side effects of cirrhosis and indeed the side effects of prolonged prednisolone use. (As well as his pred, he takes Omeprazole to protect his stomach lining, Rifaximin and Lactulose for Hepatic Encephalopathy symptoms, Adcal D3 to protect his bones due to prednisolone and Phenoxymethyl Penicillin - this due to the loss of his spleen following an embolization operation).
Fingers crossed you can get your biopsy and treatment a.s.a.p. The main thing regarding treatment will be that you won't be able to have the less symptom prone budesonide as it can't be used with cirrhosis and probably will have to have prednisolone to control any ongoing inflammation. In my hubbies case because he has no active AIH they have never introduced an immunesuppressant which is the normal pattern of treatment for AIH.
As you already have cirrhosis then as well as controlling the AIH to prevent further damage they will need to monitor your cirrhosis (6 monthly scans, blood tests etc) and contain any of the side effects of this condition.
Hopefully doctors will get on top of things once you return from your trip. Try and enjoy your time in Canada.
Thank you Katie for sharing your husbands journey with these illnesses. I find it really helpful to know something of the next steps. Like your husband, I too had no inkling I had contracted AIH and so it was left untreated and now it’s been found, I have cirrhosis too. It’s very distressing, but yes, Canada will be a good break. Good to see friends and family again. Thanks
I was diagnosed with PBC, another auto immune disorder, 2 1/2 years ago. I remember being devastated when I found out, and recall standing in the shower, thinking of my children and crying because I felt I may not see them graduate, marry, have kids etc.
2 1/2 years on, I’ve had a transplant, feel incredible, and am looking forward to life, with my partner, and the future of my kids.
Yes, your news is horrible, you will feel devastated that this has happened to you, and your loved ones, but be assured, the future needn’t be so bleak. Keep positive, ensure you have a healthy life, and most importantly, enjoy Canada!!!
Hi Andy, Thanks for your support .. not to worry, the questions will be answered in due course. I’m so glad to hear you are doing so well after your transplant. Are transplants always so quick? (2-1/2 years may not have seemed quick to you at the time I guess!!)
I don’t know yet how far the cirrhosis has gone for me.. my eldest son did ask though if I’d need a transplant.. 😳 I hadn’t thought that far ahead myself! It seems so unfair though that these autoimmune diseases creep up and destroy your organs without you even suspecting it’s happening... and when you do find out.. too darned late! I don’t drink and the last thing I ever thought I might have is cirrhosis of the liver! Anyway, there it is.. and I’m trying to maintain focus on ‘next steps’.. otherwise I’ll be a wet blob on the floor!
Canada will be awesome! So beautiful in BC. I lived there (Vancouver Island) for 7 years and I’m staying with friends. It’ll be so good to Walk around the beautiful lakes again with friends.
It’s drizzly and grey here. Hope you’ve got sunshine. Have a good one Andy and thanks again. Padders
Firstly, don’t be a wet blob.....it makes a terrible mess!!
Yes, auto immune diseases are a total bugger!! What have we done to deserve them!!
Are transplants always that quick?? Well, it depends on how far gone your liver is!! Do you have any symptoms at all!?? I had none at the start, but after 2 years I was getting quite a few, and your consultants job is to gauge the most suitable time to refer you to a transplant centre. Mine got it spot on. I saw consultant at Birmingham in February, he said yes we need to get you in the list, I went through the assessment process through April, and was on the list for three weeks when I got the call. First time, new liver. That was 7 weeks ago. When I went for assessment I genuinely felt like I was a bit of a fraud, and not Ill enough to take a valuable liver.
Having now been transplanted I realise just how poorly I was - everyone comments that I looked crap before hand, but I never saw it - and they never told me!!!
But, many people with pbc and psc, a similar disease, die WITH the disease, not OF it. I don’t know specifically about AIH, I’m sure others on here can let you know.
So, easy for me to say, but, relax a little about it!! There’s a long road to go, to find out exactly what stage you’re at, and yes, it will take over your life for a while, but there really is light at the end of that tunnel - you just need to get through it before some bugger decides to turn it off!!
And for the record, I’m really envious about Canada!! It’s been ages since I’ve been able to go abroad, off to Scotland and Ireland later in the year....not sure it’s the same experience!!
All typed in the beautiful south, where the sun is shining!! 😀😀
Have a relaxing holiday and ENJOY it. I'm waiting on a fibroscan to check for scarring, I've got my DEXA scan on the 17th. The main thing is to always look for positives, I know it's hard.enjoy your family and your holiday.
Tracy
Hi Padders
I can’t add any more than to that that has already been said except to join the others in saying hope you have a great holiday on your family occasion. That should be nice , and Canada as well - that’s very nice!
Miles
Hi. I was wondering did you have fibrosis first and it progressed to cirrhosis? And where you on prednisone and Autoimmune suppression? Just asking because I was diagnosed in 2017 and my enzymes were very high and they started me on prednisone and Aza. Where your enzymes high? It’s a lot to take in But you will be fine. Enjoy your family and your beautiful trip. Hugs💕💕💕 I have fibrosis stage 2 according to fibroscan. Numbers all over the place 😱
Hi Nidia, no fibrosis for me, that I’m aware of. I seem to have gone from 0 to Cirrhosis in double quick time. I had no symptoms but tiredness. My GP ordered blood tests and the medical lab technician called me the same night telling me to get back to my doctor urgently the following day. I don’t have all the results but AST 795; ALT 644; GGT 227, with ESR 97. Bilirubin 38; APP 181.. I have nothing to compare this to.. what were yours? Anyway, she ordered an urgent ultrasound and referred me on an urgent basis to the gastro consultant. He ordered an urgent CT scan. Because I’m still to have the biopsy, the medication can’t yet be calculated but I’m having the biopsy the day after I get back and have been told it will be prednisone, but it will need careful monitoring because of the cirrhosis.
How about your fibrosis. How is the staging decided? Is it under control at stage 2, improving ? Do you have many side effect?
It sure is loads to take in Nidia, but hearing other people’s stories is very helpful. Cheers, Padders
My enzymes were sky high 1500. Went down quickly on prednisone and Aza. I had very bad UTI was on Amoxicillin for 10 days and on 10th day got very sick. First biopsy was awful because I was so badly inflamed staging was terrible. Had another biopsy and I was still inflamed but not as bad was stage 2/3. First one was stage 3/4. But took very good care of myself. Ate right etc. so 2 months ago had fibroscan and it was 7.8. But was inflamed again. And another one 3 weeks later inflamed again 9.4 inflamed. So they told me it was stage 2 fibrosis. Stressed out with 2 parents with cancer hasn’t helped last 9 months. But trying not to stress as much. My enzymes are now 20 Alt. And 29 Ast. So in remission. Was off all medications till parents got sick. My hep thinks I had drug induced autoimmune. Had ultrasound looked good. And just had ct scan 2 days ago. I am just hoping it can reverse itself. Never had high enzymes prior to getting sick. 3 months prior I had normal liver enzymes at 10 alt and 11 ast. So I am thinking that antibiotic was the culprit. 😢. Staging was decided by biopsy and 2 years later by fibroscan. No side effects from Aza. On 2.5 prednisone. Should be getting off soon on prednisone. Best of luck. Keep me posted. 💕💕💕
Hi Nidia, you’ve had a really rough time. Who would have thought an antibiotic could cause such problems?! Wow.. I hope the remission lasts and your liver regenerates so that you can be back to good health soon. Getting off prednisone would be a bonus! I don’t understand about the staging. You say it was 2/3 then 3/4. Does this mean there are 3 or 4 stages?
The strange thing for me is that I feel ok. Tired yes, but otherwise ok. After the biopsy perhaps we’ll know more about exactly where this is at and what the prognosis is. I’ve been in remission from rheumatoid arthritis for many years, (roughly 14 years) but I was on methotrexate for quite a while. My consultant isn’t convinced that’s what’s caused the AIH, though it’s a possibility. Anyway, time will tell. In the meantime, an alcohol free healthy diet and rest as needed is all I can do.
Look after yourself as well as you can. All my very best wishes for a full recovery. Pads
I am sorry. My first biopsy when I got sick was stage 3/4. Then 2 months later it was 2/3. Then fibroscan 2 or 3 months ago showed stage 2 no fatty liver. But on all these test and biopsies I was inflamed. Stages go from 0 no fibrosis. To F1. Mild fibrosis. F2 moderate fibrosis. F3 is a lot of fibrosis and F4 is cirrhosis. That’s how they measure how much scaring you have and damage. Keep me posted on yours. They say some fibrosis can reverse. I eat very well and don’t drink and take my meds and try to forget I have anything wrong. Keep on pushing. 💕💕.
I’m on holiday now (planned for over 6 months!) and I go for the biopsy the day after I’m home.. the ultrasound showed nodules and scarring, the CT scan showed cirrhosis.. as I say I feel pretty ok by and large tho and who knows what the biopsy will show. I’ve never been much of a drinker so finding out you can get cirrhosis any other way has been a real eye opener!
I’ll be in touch when I know more. Thanks for your support Nidia. It’s very helpful.
I'm just catching up on your correspondence which has only just appeared within my message box!
Unfortunately I cannot comment on your medical condition but wanted to wish you a wonderful holiday in Canada! I'm informed by my nephew it's a beautiful place to visit! Maybe one day I will get that chance too!
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