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Autoimmune Hepatitis - accepting diagnosis
Hi, I'm really struggling to accept the diagnosis of AIH that was given to me in Dec 24. I have tried really hard but just don't believe I'm sick or that I have a 'disease'. I've never been a 'sick' person and on occasions when I've needed medical involvement it's always been for things that a bit of surgery could sort and then I just carried on as normal again. I didn't feel sick last year when I was told I needed to be admitted to hospital and I feel like the doctors used a lot of scaremongering and quite frankly applied a sledgehammer to break a nut in their approach. I had an awful experience when I was in hospital and don't trust the judgement of the doctor who made the diagnosis. I felt a lot worse when I left the hospital then when I went in because of everything that was done to me and how I was treated. I've had awful side effects from prednisolone and am now weaning myself off it completely - against medical advice but without any problems. I'm still angry & upset that despite asking, I was never told about likely side effects on the pred. I've tried really hard to accept that I am 'sick' but I just don't feel it - and I don't accept that I feel well because of medication I am on. Coming off the pred by myself, to me, shows I don't need it. In hospital my liver levels decreased 40% in a week without any medication but I was never told this at the time - I was just told I had to take steroids. There was no discussion about spontaneous remission and whether I wanted to see how far the figures could go on their own without using harmful drugs. I wasn't consulted about anything they did to me in the hospital and just felt like a lump of meat being kicked around. The outpatient consultant is a nice lady but I just don't feel like I want any involvement with any doctors any more as I just don't feel like I could ever trust them again. I also don't believe I would ever approach a doctor if I felt a bit under the weather again. I don't have the symptoms of AIH. I don't see the point in asking for a 2nd opinion as they'd just look at the notes from the first doctors 'diagnosis' and go on that. Anyone else felt like this? Would really help to know how you dealt with being told you were 'sick' and had an 'incurable disease' when you actually felt ok until a load of drugs started being pumped into you. I'm usually a very cheerful and optimistic person 🙁
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@sarah217
Good to know! Thanks for the response.
My liver wasn't properly metabolizing AZA, so I was switched to Myfortic. So far, so good. I've been tapered down to 2.5 mg of prednisone now as well. Can't wait to be off it completely!
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1 ReactionMy liver enzymes had been slightly elevated for a couple of years. During my last regular appointment with my PCP, routine bloodwork showed they had increased significantly. She pulled me off my statin and off all alcohol (not that I was a big drinker) and we re-tested after a week. I ended up having 3 blood draws and a liver scan in 36 hours. I felt perfectly fine, but the blood work hadn’t lied. Radiology said my scan showed cirrhosis.
Thirty (yes, 30) blood tests later, the specialist who had become involved did a liver biopsy. One sample was checked locally while the other was sent to Mayo to look for a couple of specific markers. The final determination was that I have grade 2 fibrosis (NOT cirrhosis, thank goodness) and antibody negative AIH. All those blood tests served to rule out a bunch of things that could have been contributing factors and contributed to the diagnosis. My Liver Lady put me on lots of steroids (not prednisone - something that isn’t systemic in hopes it won’t totally mess up the rest of me), a very high protein diet, and is sending me to the gym to do some work with weights. Side effects have been quite minor.
The most important thing has been that my Liver Lady answered ALL my questions, explained the options and risks - including using an immunosuppressant instead of the steroid or not treating it at all - and has me scheduled for a fibroscan in a couple of months to see where we are.
I’ve been around the block enough times (I’m 67) to know your body can have all sorts of things going on that you don’t really notice until they’re so far advanced that treatment options are limited. While I was on the fence about who to see as things became more complicated, I’m now comfortable with my team. My docs work together well, make sure I’m an informed part of the decision making process, and have my trust to do what’s best for me.
I’ve fired docs before. If you aren’t comfortable with your treatment team, get that second or third opinion - find someone you trust and can communicate with. That’s half the battle. You can’t advocate for yourself if you don’t have that kind of relationship. But when you find someone you work well with, you can get your questions answered, get a better understanding of the how’s and why’s, and if a particular med is giving you problems, they can address it.