Will I see specialist forever?

[Lauralee851]

Hi everyone,

I started seeing my liver specialist a long time ago now. It must be 8 years. They found out I had positive AMA and also ANA when investigating my arthritis. I still am labelled as arthritis (query rheumatoid) and mild chronic liver condition but he hasn’t yet called it PBC, two vague labels. I went on Urso when I was pregnant and I had obstetric cholestasis then but came off it after birth. My liver results have been up and down over the years.

I’m starting to feel like what’s the point seeing the dr? Why do I see him anymore? I actually love my dr he’s so good but do I need to or can I just get on with my life and go back if I get ill?

I actually am unwell right now, my GP is treating me for a kidney infection and I’ve been feeling very tired but generally I’ve been fit and healthy. Im 36, work 4-5 days a week and have two young children.

Is anyone else like me? My specialist changes the regularity of when he sees me based on how I am and how my results are. If im very well it’s a year but I just had my appointment over the phone Tuesday and I think he said March next time.

All the best to everybody,

Laura

[Gioielli5]

It must be difficult especially as you are so young. However, you will probably need to see your specialist for life. I have been seeing mine for 11 years now. My main concern at the present time is that we won’t be able to see our specialist as with the new Health and Care Bill, the NHS will no longer need to provide hospital services. I think we should be grateful for the help we are receiving at the moment because soon it will no longer be available.

[Lauralee851 in reply to Gioielli5]

Wow that’s bleak. I hope something stops that from happening. It doesn’t bare thinking about. Yes I’m grateful and that’s part of my thought process, I feel like I might be using the drs time unnecessarily but I’ll carry on until he says otherwise I guess.

[exy21]

I been seeing mine for 16 years and it'll be him or another specialist for life as my pbc goes up and down. Before covid it would vary between 1/3/6 month appointments depending on bloods. Now I see him rarely but doc's take bloods and he phones to discuss and adjust meds.

Be happy you're being seen as so many people left needing to see someone. Once you're out the loop(signed off) it's hard to get appointments. You don't want to get ill as by the time you notice usually means lots going on.

[Lauralee851 in reply to exy21]

Yes you’re right I’m sure. At least with the regularity of monitoring they would know fairly soon if anything is ‘off’. Just don’t want to waste their time, and I think I’ve reached a what will be will be point with all the liver stuff now.

[exy21 in reply to Lauralee851]

We all have these moments 😁

[Candy12]

Monitoring would be lifelong, to what level this applies to each individual depends on where you are in your journey.

I only see mine annually with six monthly bloods if the bloods change then it gets increased to 6 Monthly consultations until things settle down again.

What came to my mind from your post is the lack of clear diagnosis for you. You mention your liver results have been up and down over the years, depending on what they are doing this could help confirm or clear up the issue on your diagnosis. And if you do have PBC then you have the right to be on medication, to stabilise the condition.

To diagnosePBC you need two out of three criteria if you read the information/or contact the PBC foundation they can help explain that better than I can. So it might be worth having a word with them. You can find a link to there details at the top of this page.

However, there are those who have a raised AMAM2 that do not have PBC, but it’s fair to say you deserve a clear diagnosis either way. You’d still be monitored incase things changed but you’d be able to make clearer decisions if you had the full information. This is where the PBC Foundation can help advise you , it’s free to join and they have a helpline you can call.

[Lauralee851]

Hi,

The lack of clear diagnosis used to bother me but it doesn’t anymore. When I went on urso I gained a lot of weight which I found impacted on my life with 2 children. I’ve since lost 6 stone and I don’t want to go on urso again unless I really need to. They’ve tested M2 in the past and was positive, but most of my LFT’s except gamma GT were ok last week so my specialist is happy.

Thank you, yes I have spoken to them in the past. They are very helpful. I do feel fairly educated as it’s been years now that I’ve known about this.

I think I don’t really want to have PBC so I’m not pushing for diagnosis. They treat me as if I have it anyway, I’ve had the third Covid dose, free flu jab etc but if my dr says I’m ok then that makes me happy.

I just don’t seem to often hear of other people who are AMA positive but who’s specialists are taking a watch and wait approach.

Thanks,

Laura