Is pain normal/ok?

[Tennisgirl123]

I have AIH and am on budesonide and azathioprine. This week I’ve been getting some pain in my liver is that normal or should I be calling my doctor?

I’m pretty newly diagnosed so not sure what’s normal or not just yet. Any advice would be great

[Onesmallstep1969]

When I was on aza, I also had the occasional pain. Mine was in the middle of my chest right about at the level of the solar plexus. My hep told me to pause the aza whenever I got this pain. You should tell your heptologist about the pain right away.

[Hidden]

Hi Tennisgirl

Although I have no information regarding AIH, I would suggest checking with your doctor. It is possible that the pain is unconnected or it might be a side effect or you may be a little intolerant to one of your meds and perhaps a different one may suit you better.

I hope you get it sorted quickly

Dave

[gertrudestein]

HiMay I recommend the AIH support group on Facebook. It is a closed group so only members see your posts and there is a very large pool of experienced people who have been through it all before.

As regards pain, I was told that the liver itself cannot be painful (unless it is very enlarged and stretching the capsule around it) but presumably you had an ultrasound at some point in your diagnosis and that would have shown up abnormalities of size, texture, etc. The medications themselves can cause problems but there are alternative varieties so if one doesn't suit, it is possible to try something different.

It is a steep learning curve especially if you have never been ill before (me) but it can be managed. Unfortunately, it is rarely seen by GPs so they may not have all the answers but a good hepatologist should be able to advise.

[Limalama]

Hi there, I have AIH overlapped with PBC, diagnosed almost 2 years ago, on azathioprine, pred and Urso. I didn't have any pain initially, but then earlier this year I had a dull ache under my right ribs for about 6 months. I had a routine appointment with my hep during that time and he just nodded and said some discomfort wasn't unusual but to let him know if it became really painful. But a couple of months after that it went away and hasn't come back so far. Having said that, the hep told me that based on my situation and it may be that your situation - level of fibrosis, other conditions - would lead to a different response so I would say mention it to your hep but don't stress too much in the meantime.

[Cayley]

I think it’s quite normal. I had pain off and on for over a year. All gone now and bloods have returned to normal. I couldn’t tolerate aza and am now on mercaptopurine