Is it likely that I have pbc?

[blondie76]

Hi. I have been referred to a gastroenterologist but my appt is 3 weeks away and I feel I need to know how likely it is that I have pbc. I started itching about a month ago. Very similar to the itching I had in pregnancy (I had obstetric cholestasis 3 times). I felt tired and nauseous. I went to see my gp and my ALT was 478, ALP 135, CRP, ESR, Bilirubin and amylase were all elevated. I was positive for ANA but negative AMA. 2 weeks ago I became slightly jaundiced. I was away from home at the time so went to A&E and was admitted under the surgeons who put it down to gallstones (although there was no blockage of the bile ducts). The jaundice has now gone, the itching has settled of its own accord and all that remains is fatigue. I lost my husband 18 months ago and have 3 young sons so I am feeling a bit vulnerable and need answers.

Any advice/insight would be greatly appreciated.

Thank you.

[Hidden]

I am so sorry for your loss. I am sure this has been a very stressful time for you, needing answers, worrying and not feeling up to par, but you have found a place where you can get support and knowledge about what is going on with your health. We are a loving community and welcome you to our forum. PBC is not a death sentence and can be managed and slowed down through proper diet, taking Urso, and in my case also taking Milk Thistle. It is important to find a way that works for you to relax. Stress and anxiety will aggravate most conditions. Keep us posted and know you have friends available for you. I wish you well, Judi from USA

[blondie76]

Thank you healthangel. At the moment its the not knowing what I am dealing with that is the hardest thing.

[Hidden]

Sorry for your loss blondie76.

I know what it is like losing your husband and being left to raise young children alone as many years ago I was the same but unlike yourself, I did not have much at all wrong with me, mine has happened since my two have grown-up and I thought I had the second chance of a new life but then I started to itch in 2010 (when I was 46) and PBC was diagnosed 8 months later.

As healthangel has stated on here, PBC is not a 'death sentence'. I was informed I had probably had PBC 'a few years' prior to 2010 so if that the case then I've had it now for around 6yrs. I am still clocking along pretty great.

I was unfortunate back in 2010 to have it take 8 months from my first visit to GP with itching and fatigue (the latter has long since left me, former not) to getting a diagnose of PBC via the hospital consultant. The first hospital appt for me took 13wks and then another 8 before I was informed and given urso.

Just a quick question, you mention that you are negative for AMA yet positive for ANA. Well I was vice-versa and normally positive with AMA means PBC, I think positive ANA could be for AIH what is known as auto-immune hepatitis.

Given you have said that jaundice has gone and itching subsided then that sounds a pretty good sign you are doing notso bad at the moment. I found myself when I finally got the blood test results from during 2010 after diagnose that in a few months prior to seeing the hospital consult for the first time (Oct 2010) my bloods had actually started to very slowly start to come down of their own accord and that was without any urso but more than likely due to me thinking I could perhaps have PBC and was attempting to change a few things in my life and eat even better than I was doing so.

Like healthangel I take a milk thistle daily with lunch (urso with breakfast and evening meal) and I've actually found my LFTs have been better this year (as I did a bit of a self experiment last year with milk thistle).

Hang in there and I'm certain you will get your answers soon and try not to be to stressed out about it as worrying as it can be, 'into the unknown' is what I say as at the end of the day it won't really do one any good.

Please keep us all posted.

[Lindilou]

Hi Blondie76,

Bless you, I can understand you need answers. Healthangel hit the nail on the head, PBC is not a death sentence and can be managed/slowed down. My ALT tests were over 600 when I was first diagnosed over 10 years ago, they are now 50 (ish). Like healthangel and Peridot I take Milk Thistle with my Urso, I wont take pain killers or any other meds unless its absolutely necessary. I make sure I eat well and exercise and i'm doing fine

Let us know how you get on at your next appointment, and if you have any questions there is always someone on here who can help

Take care

Linda xxx

[Hidden in reply to Lindilou]

Ditto too Linda. I have not taken any pain killers and avoided any other pharmaceuticals other than milk thistle and urso since 2010. I refused to have chemicals put up my nose for what was considered the purpose of freezing and decongesting after a first chemical cauterisation last year for nosebleed (had a very tiny pinprick graze in my nose).

I decided on having to have it done a second time as it seemed worse than before had the first one, not to have anything other than the actual procedure which was actually nothing on doing (it is after-effects, feel like someone has stuck a lighter up your nose with it on due to it being burnt). I ended up having another same procedure as the second didn't quite get there! (Seems ok now.)

I go for long rambles with my husband, we have camped ever since I started to itch in 2010 and try to be on the move throughout the day as I find that being active certain diminishes any prickly feelings I can get if idle (as hard as that can be if fatigue also plays a part but fortunately for me now, I don't suffer fatigue currently).

Out of interest Linda, yo state your ALT was 'over 600' when you were first diagnosed. Can I ask how long they took to come down to 50ish? Have your LFTs gone down gradually over the years as opposed to them dropping within a couple of years say?

[Lindilou in reply to Hidden]

Hi Peridot,

That sounds painful Glad that fatigue has lifted though, its nice when it does lift, it crept up on me and all of a sudden I realised I was not needing to nap in the day.

Yes they were over 600 and came down gradually but I never really paid any attention to the numbers at first, partly denial and really did not know what they were talking about, early days there was so much to take in and I never had this site as backup

The bloods kept going up and down for years. I remember in the early days the consultant asking what i have done differently and me looking puzzled. I know at times I had antibiotics which of course reflected on the results.

March last year I done a liver cleanse diet, (its so annoying I cant remember what my bloods were) the diet seemed to make no difference (but educated me about liver friendly stuff)

It was only after reading on here about Milk thistle I chose to take them (Aug 2012) and my bloods have been coming down since. Feb 2013 i went from 500mg urso a day to 1000mg a day, again i think this has helped too. I know that in Feb 2013 my bloods were 90, then 60's and last visit 50 - aiming for that normal range

I keep meaning to get a print out of the tests as there are times when i have lapsed with the diet and want to see how it affected my bloods (Christmas, holidays etc). I have just emailed hospital to get them to send me a print/link to my bloods. Lets see if I get them, will keep you posted on findings

Blondie 76, that's good that they are watching your bloods weekly and they are coming down. There was a time when I was desperate for each appointment and worried if they cancelled any appointments, I now realise when they wanted to see me they made sure I was seen. At the moment my follow up appointment is Oct 2013!

xxx

[blondie76]

Thank you ladies. I am having weekly bloods at the moment and my liver function is definitely improving. I had a blood test for a hepatitis screen and those results were normal. I have read that you can have AMA negative pbc but I suspect that if I am AMA negative that I will probably need a liver biopsy to confirm a diagnosis. I guess I just have to be patient and wait for gastro appt but patience is not my strong point!

[Hidden in reply to blondie76]

I had the blood checks for Hepatitis myself prior to diagnose of PBC as AIH isn't to be confused with hepatitis (A, B & C). Hepatitis is actually another word for inflammation in the hepatic region. ANA normally shows positive for AIH (auto-immune hepatitis).

Don't want to put a dampener on things by mentioning this. I actually found I was tested for AIDS in 2010 whilst undergoing continual abnormal LFT results as well! It became I knew what I didn't have but not what I did. I secretly hoped it was just some glitch in my system and that with a bit of rest it would all blow over and go away, how I wish as we all do...