Still being tested for PBC-scared it could be PSC instead.

[NotorDJP]

Does anyone here have any insight into the PBC vs PSC thing? I don't have all my blood work or Ultrasound back yet. I have been told I am AMA positive, but I don't know what my titre is (how high) I have read that less than 5% of people with PSC are positive for AMA. I haven't been tested yet for the other antibodies (pANCA, ANA, ASMA) yet, but will be. I'm female, I don't have Ulcerative Colitis or another other inflammatory bowel disease, which also seems to be a marker for this I know PSC is more severe than PBC and I am seriously starting to freak myself out about this. I know all signs point to PBC (my mother had it, I'm AMA positive, I'm female etc) but the unknown is scary.

[Hidden]

Hi. I have PBC my brother has PSC...... PSC effects the large bile ducts while PBC the smaller ones in the liver. Wait until you get your results and have had your tests, because until then you can't do anything, I know it is a worry.

The PSC website and support groups are good and there are positive results from those with early stages and taking urso, the condition progresses very slowly.

Good luck

Lou

[Hidden]

Hello NotoJP.

From what I can gather about PSC as back in 2010 when I was itching and fatigued and had abnormal LFTs and GGT I ended up seeing a hospital consultant who took the AMA and also the ANA that day. (I did have another antibodies test at some point as seen it on my results from Aug 2010.) For me the only one that came up for what is known as 'a high titre' was the AMA so I was informed I had PBC.

I had read that there are only a very few percentage of women who develop PSC but with PBC it is the opposite way round. But I think symptons can appear to be the same.

From what I have read I somehow don't think there is a titre of the AMA present in PSC and though to me it sounds as if you could perhaps have PBC I really cannot say as I'm no medic.

I think your mind can run away with you whilst waiting for results and if you are in the UK as I find the NHS seems to run very slow. It took me 13wks from the GP referring me to the hospital in 2010 to see the consultant and to me that was 13wks where I could probably have started on urso and my LFTs would have been better than they were those weeks on.

I did stumble across PBC during 2010 when blood test after blood test turned up nothing except what the problem was was liver related (as you can have abnormal LFTs with a bone condition). I hoped I didn't have PBC but as more time went on I started to really wonder. When the consultant informed the day I saw him he was going to do some special blood tests and I asked, he mentioned AMA as one, ANA (mine was negative), I remember going home and then hoping not as I believed I just had something that would go away.

Took 6wks following having these blood tests to be informed I had PBC. I had read that if PBC is suspected (can't say for PSC as didn't read up much on that after knowing some things with myself weren't adding up to it could be this), apparently it is better to start a patient on urso sooner rather than later. It didn't happen that way for me.

At present I am pretty stable, been on urso for just over 3yrs now. My bloods fluctuate a bit but nothing significant yet. I suffer from the itch only at night mainly. Fatigue has long since left me but no guarantees that at some point I won't suffer from it again.

Hang in there awhile longer. I know it's not good news hearing you have something but I know for me when I was informed it didn't come as a complete shock as I had suspected but also I knew what was up. You then have to go through the process of accepting that you have something like PBC.

[NotorDJP in reply to Hidden]

Well, I've waiting over 2 years for someone to take my high ALP seriously. Its only been two weeks since they saw how high my ALP is now, so it depends on your point of view how long I've waited. I think if I have PBC that I've probably had it for several years. I hope that I haven't gone into another stage waiting or had damage. The last U/S I had was in 2011 and it was clear. I have another one this coming Wed along with additional labs (for the other antibodies I believe) Then I see my doctor on that Friday. I expect him to do a referral to GI doc at that time. I have several that specialize in liver in my area (but I hear they are leaving town and going elsewhere due to the local hospitals' issues) and my mother's old GI doc is in Ft. Wayne, In, which is about an hour drive from my home. I am expecting PBC and like you said, won't be surprised. If they say I have PSC, I will be more shocked by that.

[Hidden in reply to NotorDJP]

Sorry to read that you seem to have had a bit of a long process to get even this far. I now seem to suspect that you are in America?

Now here in the UK where I am, under the NHS we normally follow a certain pathway. I did see one with regards to starting off with abnormal LFTs. I actually followed the pathways over 8 months before I had the AMA blood test.

I had a scan 3 months after my first abnormal LFT. The ultrasound looked pretty much normal. The GGT blood test was showing slightly inflammation when I had the last blood check prior to going to the hospital. Usually when a GP has exhausted what he can do he refers you to hospital. Given this relatively new and young GP didn't know anything about PBC except what he could throw up on the NHS website after I was diagnosed had he probably known prior to his referral, I might have got to see a hospital consultant that bit sooner.

The hospital consultant wrote to my GP who then informed me I had PBC. I then received a further appt from the hospital which was 8wks after starting urso and the consultant informed me that day when I went that I had mroe than likely had PBC 'a few years'. For me had I never itched I'd never have seen the GP.

PS I have heard about worms in the liver too.

[NotorDJP in reply to Hidden]

Yes I'm in the states. Here, the doctor pretty much determines what he will test for, submits to insurance and they pay or not. Then we handle what insurance doesn't cover. If its a big test,surgery, etc, insurance will be "pre-qualified" to see if they cover it. If they don't, you can still have it, but you will be on the hook for the whole bill. I have itch, but I don't think its from this. Its dry here and most people have itchy skin in the winter. I have the fullness and discomfort on my right side, which I've had off and on for a long time. I also have fatigue, but it isn't debilitating. I don't know how much of it is from this or just my lifestyle, to be honest. Since my Bilirubin is normal and albumin is also normal, I hope I am in early stage. Thanks for your response.

[Hidden in reply to NotorDJP]

If your bilirubin is normal then you sound like you are quite fine at present. Mine has been normal since when I first visited the GP in early 2010.

Apparently with PBC bilirubin can be an important marker.

[NotorDJP in reply to Hidden]

My bilirubin has been good overall. I don't know if it has risen any, since I really haven't looked at it much. I do have some showing up, but its within normal limits

[DonnaBoll Administrator in reply to NotorDJP]

This happens all too often that a doctor doesn't take elevated liver enzymes seriously. Glad they are now.... labs should be done every 3-6 months according to the Standard of Care. A + AMA and elevated liver enzymes should be sufficient for a diagnosis of PBC. Let us know how the doctor appointment goes as well as your lab work.

[judyt]

I have PBC but I know somebody who has PSC and has done for many years. As far as I know she is fine, I know she is on Prednisone daily but apart from that don't know. Nobody would know she has PSC,her life is pretty much normal for a lady of 60+.

[NotorDJP]

Thanks for your replies. I know my diagnosis is leaning more to PBC than PSC, due to the AMA, but while you are waiting to do more tests, your mind kind of goes all sorts of directions. Thanks for the encouragement Louf. I'm glad your brother is doing ok. I was on the PSC foundation site yesterday some. I think it was the US site though. In an irony, I was watching "House M.D" last night and they thought the guy on there had PSC. He didn't, but they did the ERCP and found he had worms in his liver...eww.

From what's I've read, people with PSC are AMA positive in less than 5% of cases. I don't want to go full on anxiety here either. I know there are folks with PSC that are doing ok. But with the internet you hear the worst side of both diseases. thanks again

[NotorDJP]

I also am kind of freaked out that you guys have to wait for a letter to come from the doctor? Is that required under NHS to have it writing or are they just so overwhelmed with patients they don't call? Curious how it works.

[DonnaBoll Administrator in reply to NotorDJP]

I, too, being from the US is curious how this system works. I hope someone can explain this for us.