Biopsy says PBC/AIH overlap: So my Dr called... - PBC Foundation

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Biopsy says PBC/AIH overlap

IAmTheGlue
IAmTheGlue
β€’20 Replies

So my Dr called today and said that I do have the PBC/AIH overlap. The biopsy/labs confirmed what she was thinking.

Apparently it is that AIH that's driving this train. She said that my liver issues during my last pregnancy probably spurred it on, making AIH come on aggressively, but she is very encouraged by my latest labs that I'm responding so well to that Urso. My bilirubin is higher than ever though all my other labs are going down.

I'm starting a 20mg dose of prednisone in the morning with labs in the next 2 weeks to see how it's responding. She went over the prednisone side effects and I get that it is a nasty drug, but the effects of not taking it are worse so here we go. 🀞She was clear to say the benefits of taking it outweighed the possible side effects but to be sure to call with any concerns.

So anyway, I'm quite relieved the PBC is still fairly early in the game. Apparently it is not the real concern here at this time. I'm a bit afraid of the prednisone though. I've heard so many horror stories about it.

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I also in the same boat. I take 10mg of prednisone and I really hate it because it's give me side affects like swollen ankle and feet. My doctor is trying to weave me from taken the prednisone as long as my test results come out ok

Prayer for you and hope it don't give you any side effect

Thank you. I'll pray for you as well. Have you been on it long? I 'm hoping it goes well. I just started it this morning.

Yes I been on my prednisone for 3 years now. My dr usually adjust the dosage after the outcome of my blood results

Usually he will instruct me to take 20 mg for two weeks and then take 10 mg for another two weeks and get blood work to see the results

I hope prednisone won't give you any side effects.

Hope you feel better

Thank you, I hope so too! 🀞

That is kind of what she said, take it for 2 weeks, get bloodwork and we will see so hopefully it will go well.

Hi, just been diagnosed with overlap too and I wondered how you were doing (being a few months ahead of me)? Have been on the usual meds for about 3 weeks now and actually felt amazing until I was hit with cold/flu symptoms. No wonder athletes sometimes resort to steroids - I might end up with a beard to rival ZZ Top but at least my home will be spotlessly clean! I was afraid I would end up with 'moon face' and a waistline to match but, to date, I actually feel slimmer. Possibly filling out around the face but not too bad as the extra padding seems to have filled out the 'marionette' lines that sometimes accompany the menopause. I'm trying to look at it as free Botox.

I also wanted to ask whether you were in the UK or elsewhere? I have read on the info produced by the PBC Foundation that patients diagnosed with overlap syndrome should be referred to a specialist liver unit as a matter of course. Although I have been really pleased with how the GI and my GP have dealt with the situation (NHS waiting lists excluded), I am not sure how to broach this subject. Have you been referred on or are things just being dealt with locally?

Hope you are doing well and the meds not causing too many side effects.

Take care.

Jane

Hello Jane,

I'm sorry to hear about your diagnosis but I'm glad to hear you are doing well so far. I also started off very well on the Prednisone with super energy and all that. I'm not feeling that well today for a couple reasons. I'm not from the UK but the US, Indiana specifically. My doctor is a regular GI. She is familiar with PBC/AIH and confident of her ability to treat me but said if my health hits a roadblock she will immediately refer me to a hepatologist.

Currently my levels have not yet returned to normal. I'm on 20mg of Prednisone and I spent almost two months with 2 hours of sleep a night or so before the very cold hit us here in Indiana which I'm pretty sure is going to destroy me. Then I got sick and I've never really recovered. Cold really hurts every single part of me so some of this is just the cold weather.

I have a love/hate thing with the prednisone. Tons of energy but ALOT of my hair fell out. It is regrowing in now though. My face is definitely puffed up. I've lost a lot of weight since having my baby and I started off liking the fuller face because I was looking quite gaunt. My periods have stopped now. I wake up every single morning looking 5-6 months pregnant which goes down by noon or so. Now I've had 5 babies so I'm not expecting washboard abs but this is not normal for me either. No clue about that but I'm going to ask my doctor when she calls me next week. I'm much, much less yellow these days. My left eyelid has started twitching now and then. My hands are very shaky still but the best news ever is the itch is completely gone! GONE. :D

My doctor had planned to start weaning me off the prednisone last month with a goal of 5 mg. Last month she said that was no longer her goal. The new goal is staying on 20mg for another month or so and wean slowly to 10mg. Stay on 10mg for 2ish years and then see if she can wean me off of it without a flare.

Overall I'm doing okay I guess. I'm struggling today. I was taking Atarax for the itching. My husband bought me an AppleWatch which gives elevated heart rate warnings and I was getting heart rate spikes after taking the Atarax, looked into it and I am pretty sure I should have never been prescribed because I have an arrhythmia. It can cause a fatal heart rhythm in people with an arrhythmia... so I'm distrustful of my doctor now. *sigh*

I'm due for bloodwork soon. My levels started dropping off to a low in October then rose in November and are dropping but have not reached the levels they were at in October yet.

My husband is thinking seriously about moving our family to Jacksonville, FL so I can be treated at the Mayo Clinic and so I won't have to deal with the cold. It's just too much to think about right now.

Anyway, my doctor has been happy with my progress. She said she thought we would be dealing with a whole different situation when she met me, yellow as a minion and all that, but she is happy so far. It seems slow progress to me. My eyes are still slightly yellow. I do hope that you continue to do well. I feel like overall I'm doing well with my liver I guess. I had hoped things would go back to normal by now...the main issue I'm having is related to the bitterly cold weather.

I hope that you all are doing well. Sorry I've not been around lately but like I said, I'm struggling. I'm in a bit of a dark place right now and sometimes I would like to forget about being sick.

Take care,

Stacy

Hi Stacy

Thank you for getting in touch with me and I am so sorry to hear that you are having a bit of a rubbish time at present. I've been watching the weather situation in the US on the news and things look really bad. We just don't get weather like that in the UK. Does the cold give you joint/muscle pain? I suspect you must be quite a bit younger than me (I'm 52) as you have not long had a baby.

It must be really tough keeping on top of things with young children - mine are both adults now and don't live at home. I see them regularly but have made the decision not to tell them about my condition as I don't want them looking up all the scary stuff on the internet. I can't see the point in them going for testing as it could potentially prevent them getting life insurance and they could have years of needless worry.

Your husband sounds lovely and really supportive - it's a really big thing to suggest a move.

I had to take a couple of days off work last week but only because I had picked up a nasty cold and felt really rough. I am now back to normal fortunately.

I am currently having bloods every two weeks so my GI can see if the meds are working when I see him on the 31st Jan. I went for my second set of bloods tonight and the nurse had a look at the first lot of bloods (taken 8 days after I started on Pred and URSO) show that my ALP level has virtually halved (1100 to 600). Other readings heading in the right direction but at a much slower rate. The itching has virtually stopped (a godsend) and she says this is the reduced ALP. However, I understand that the crazy overlap thing means things can quickly change so trying not to get too hopeful.

Try to take some comfort from the fact that your doctor seems happy and I hope the weather eases and you begin to feel a little better as spring approaches.

Keep in touch and let me know how are you doing when you feel up to it.

Take care.

Jane

Hello again Jane!

Nice to hear from you again. Yes, the cold gives me muscle/joint pain. Sometimes my bones hurt. Some of that I believe is related to a vitamin D deficiency. I have a diagnosis of Fibromyalgia from about 12 years ago or so but... I never took that seriously because I was going through a bad divorce at that time and was super stressed out. My husband has researched it quite a bit lately and said that many people do get the pains I'm experiencing with Fibromyalgia.

I just turned 41. I have children ages 17-6 months so some days are challenging.

I do understand you not telling your children. My children know and the older ones have been quite concerned. I am going tomorrow to have blood work done and will post again how things are going once I get those results. I'm glad to hear that your results are improving. Hopefully they continue to do so .

I'm hoping (of course) things will be better but I'm not 100% sure they will be. I have a few concerning symptoms so I guess we will see.

Stacy

Hi Stacy

Nice to hear from you. Hope your blood tests show some improvement. If it is any consolation, I understand from some posts and medical information that worse symptoms aren't necessarily connected to worse results.

Will keep my fingers crossed for you.

Jane.

DRK1960
DRK1960 in reply to IAmTheGlue

Hi. I am in southern Indiana. What part of Indiana are you in?

IAmTheGlue
IAmTheGlue in reply to DRK1960

I was in Greencastle, a little west of Indy. We moved to Florida so I could be treated at the Mayo Clinic. I was misdaignosed at IU/Methodist. They said I had early, pre-clinical PBC/AIH overlap. I actually have PSC/PBC overlap and am already in early cirrhosis. They are watching a spot on my liver for cancer. I'm still so angry at IU for screwing up my diagnosis that badly. They started me on Prednisone which I did not even need and may not be able to taper off of.... Ugh.

When I came to the Mayo Clinic for a second opinion the transplant hepatologist said I was either much further along than IU had said or there was another disease process going on. My husband did a corporate transfer and we bought a house we never even set foot in until we had a uhaul parked in front of it. Scary times but it worked out okay. And they were right on both accounts... Much further along and another disease process going on.

Anyway... I would advise anyone to get a second opinion. I've been diagnosed less than a year and went from being told pre-clinical to early cirrhosis with possible cancer. Get a second opinion.

Lawyers
Lawyers in reply to IAmTheGlue

Why not take Imuran instead?

Hi Jane I was just diagnosed with AIH overlap PBC I started 40mg predisone and 1000mg Urso yesterday I'm so not wanting to take the predisone I don't want to gain weight ugh I have to do this and in two weeks take blood tests ..can AIH be cured?

Hi

I am such a newby like you so I am sure there are lots of other people who can give better advice. I have read somewhere that it is possible to cure AIH or for it to go into remission but I didn't get the impression that this was the norm. I have been on Pred for a month now and actually feeling great. However, I am slightly worried that everyone else seems really concerned about the Pred. Perhaps I will get some unpleasant side effects when I have been on it longer.

All I can say at present is that I am full of energy and don't appear to have put on weight. I haven't noticed an increase in my appetite (and I like my food). I might be a little fuller in the face but this has actually padded out my nose to mouth lines so I probably look a little better at present. Will keep you posted if I end up looking like a chipmunk because I don't think I'd be happy with this.

Going with the doctors' advice at moment but still researching loads for alternatives. Will let you know if I find anything of interest.

Try not to worry. Good luck with the meds.

Jane

Well maybe you and I can keep in touch on our journey because we both seem to have been diagnosed at the same time let's just pray that we caught it in time and that we can keep it under control what state are you in I'm Connecticut but I'm moving back to New York in a few months stay strong that's all we can do

Hidden
Hidden

Yes, the Prednisone can save your life. Seems like 20 mg. is quite a small dose. At one point, I looked like the Michelin man, but it's worth all you will endure. Looking on the bright side, not everyone has the same bad side effects.

Lawyers
Lawyers in reply to Hidden

What about Imuran for AIH instead?

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