PBC poss AIH overlap don’t know what to expect?!

[Nt14]

Hi all, new to this but seeking some advice.

Had dark urine and bit of itching so sent for blood test which showed very high levels of ALT. Ultrasound and MRCP showed nothing abnormal but further bloods tested strongly positive for AMA. Consultant suspects PBC/AIH overlap because of the high ALT and has said will need liver biopsy. Have since had fibroscan and further bloods and been prescribed URSO. I now haven’t heard anything further from hospital and don’t know result of fibroscan . I have never had a face to face consultation due to COVID. Just one phone call which was a blur and a copy of letter sent to GP. I have no advice or support and no real clarification to what to expect.

How long should I wait for results? Or a liver biopsy? Anyone offer any advice, I feel i have been left hanging and messages left with hospital never answered. Thank you.

[Limalama]

Hi Nt14, you don't say how long you've been waiting to hear from the hospital. Have you contacted your GP? They may well be able to make contact with the hospital and find out what's going on. At least you're on Urso for the PBC, but if you have got AIH too (i've got both) then you do need to find out and get the appropriate treatment. Good luck, let us know how you get on?

[Nt14 in reply to Limalama]

Hi Limalama

Thanks so much for taking the time to reply.

It’s been 3 weeks since fibroscan and any correspondence from the hospital. When I first had the abnormal Lft and very high ALT I was on a 2 week urgent referral everything was very speedy, GP and hospital were in touch regularly. I guess I’ve just dropped down the priority list-which might be a good indicator!?

It is quite isolating not knowing, and tempting to ignore it and bury my head in the sand, as my symptoms are minor. But I know if it is AIH it also needs to be treated.

Thanks for the advice on contacting GP, I will do this. I hope your treatment is working well and you are managing your condition.

Thanks again for response.

All the best

Nicola

[Limalama in reply to Nt14]

Hi Nicola,

I see that you've heard from the hospital, which is great news. Brilliant too that the Urso seems to be working so well. I've been on it a year now and no problems with it at all, though I'd love them to be a bit smaller and easier to swallow 😁. It's definitely a bit of trial and error while they work out exactly what you've got and what the right medication is for you, but there are lots of people on this forum who are taking much the same path and understand the frustrations.

Thanks for the good wishes. I've been very lucky in that I can tolerate steroids and azo (for AIH) very well and I feel 100% better than I did before I was diagnosed....I wish you the same!

Best wishes,

Louise

[Nt14 in reply to Limalama]

Hi Louise,

Thanks for your message, your positivity perked me up this morning as was feeling deflated after call from hospital first thing ALT back up again so putting me on budesonide??

It’s good to hear you tolerate your medication. My biggest fear is horrible side effects of steroids. The annoying thing is I feel absolutely fine despite what’s going on inside my body, it’s tempting just to say I don’t want any of it, but I know I need to think of the longer term picture.

Thanks again

Nicola.

[Hidden]

Good afternoon,It is really important for you to have some clarity about the situation with regard to follow up. It might be helpful to call the Patient Advice and Liaison service (PALS) at your hospital to voice your concerns at the lack of communication. They should follow this up for you. You might also find our Patient Charter helpful - it tells you what you should expect fromn your care :

britishlivertrust.org.uk/li...

regards

[Nt14 in reply to Hidden]

Thank you for that information. To be fair to the hospital, I have received a letter from them today. It seems that the postal service is more a problem at the moment. Those links are a useful reference though, so thank you.

[Kakey]

Hi there Nt14. That's a rough place to be, I was in a similar-ish situation last year, hope you're doing OK.

Just want to give you my timeline, if that helps you. I had initial hospital appointment in January 2020, got diagnosed with AIH in Feb, had biopsy in March, diagnosis changed to PBC in April, 6 weeks after the biopsy. So COVID-19 wasn't a factor for that whole timeframe, but I think it was for getting the biopsy results. I was fretting about not getting the medication I needed; I didn't even get Urso until May. But I am glad now that I didn't get the AIH meds at that time.

Best wishes, hope you get your biopsy soon x

[Nt14 in reply to Kakey]

Hi Kakey

Thank you for your response. That is really useful to know how long things have taken for you. Things seem to be following a similar pattern yet I’m lucky to be prescribed URSO just 6 weeks after first abnormal bloods.

I have heard from the hospital today and ALT has dropped from 1340 to 690 after a week on URSO, so liver biopsy on hold until bloods monitored for a bit longer. Fibroscan was also normal. I’m hoping it’s PBC only too, although radiologist has now thrown PSC in the mix!

Think it’s a bit of trial and error until they define which autoimmune liver disease it is. But to be fair to the hospital letters were sent a while back but the post seems to have limited delivery at the moment.

I hope you are coping ok with the PBC and the meds are working. Thanks again for your response it really does help when someone has has similar experience.

Best wishes

Nicola

[Kakey in reply to Nt14]

Goodness, that was high. Good it's responding too, hope it continues. I can see why you were initially seen so quickly.

You are lucky you got diagnosed and got Urso so quickly, I'm AMA negative and it took me a looong time. Thanks for the kind wishes x