Advice needed please!

[Saralou73]

Hi my name is Sara and I'm a working mum of 4, my children range from 22 down to 1, my confusion is that I have recently been told I'm positive ama with a high titre, but all other blood tests are normal except vitamin D which is low. I originally went to my GP about fatigue, aching and itching . I have been reading loads on google, loads of scary stuff! I've seen a rheumatologist who said I'm likely to have PBC but he is referring me to a gastro specialist for more tests. I don't know whats right or wrong? Some say you have a normal life and others say the opposite, then I've heard that just because I'm positive ama doesn't mean I'll have PBC ? Can someone please explain it all to me in very simple terms 🙏

[Hidden]

I hope that you can get your answer soon. What does high titre mean. I'm sorry I'm just now learning these tests

[Hidden in reply to Hidden]

High titre is the measure.

[Skypony]

Hi Sara

Others on this forum will give you better, more comprehensive answers (I'm fairly new myself) but I wanted to say a couple of things. If the blood tests included your liver function tests (usually abbreviated to 'LFTs') and they're normal, that's a very encouraging sign!

Try to stay calm and positive while you wait to find out more - I know it's hard, but you're right to say that you can have AMAs without developing PBC, and a high titre is apparently not significant. If you do eventually get a diagnosis of early PBC, don't pay attention to some outdated info on the internet which has also scared many of us at some point, because it doesn't represent the true picture at all. I hope you will get many messages reassuring you of this, and if it turns out that you do want or need ongoing support, you will find a wealth of it here from kind, caring people, and the excellent 'PBC Foundation'.

Best wishes x

[LindyRich]

Yes do join the PBC Foundation. It is far more up to date and accurate than most of the info on google. Skypony was right that there are many of us that got a scare when we "googled" PBC.

The compendium on pbc foundation website is clear and understandable, giving a more balanced picture.

On the up side- most people who get PBC die WITH PBC not OF it. It is for most people very slow to progress.

Take care. Do let us know what you think.

Best wishes

[Hidden in reply to LindyRich]

Also not forgetting LindyRich, there is a dvd all about PBC that is available free from Liver North who are based in Newcastle in the UK. Check out their website. They also produce newsletters which you can look at online and they tend to contain mainly PBC issues I have found. There is also British Liver Trust which has leaflets to see online, they list all the different liver disorders and PBC of course is there plus there is an informative leaflet I recently looked at again all about diet.

[LindyRich in reply to Hidden]

Of course Peridot I'd forgotten about that.

[Gioielli]

Contact the Foundation they will explain it all to you. Don't worry.

[Hidden]

Hello Saralou73.

It sounds like you do have PBC but I'm no doctor so can't really say. All I can give you is my experience. I started itching back in early 2010. It was intense and after a fortnight I took myself off to the doctor. I am in the UK and a week later I was in the NHS Pathway, the one that GPs follow as a sort of guide. (I once found it online, mine went as it was.) Early blood checks beside the full blood count (FBC) was the LFTs (liver function test). My LFTs were found to be higher than normal. The GP did other blood checks to rule things out, they were all negative. Then he did one to determine whether bone or liver related as we can have higher LFTs with a bone issue. He rang me to say that the result had come back liver and he got me an appt for a scan. I remember having to wait a few weeks to go for that scan and meanwhile it was approaching July and 4 months on from when I started itching and was still the same there.

The scan came back showing pretty much everything normal. The GP did a few further blood checks, one he said was for copper overload that is Wilson's Disease (that was negative) and he had exhausted what he could do so referred me to hepatology. That appointment took 13 weeks to come. The consultant I saw said the scan I had had showed everything fine, he said he could even see clear bile ducts at the time. That day he said he was going to repeat the LFTs (and FBC) and I also had a Vitamin D check (that was 'on the line' (I got the reading at a later date from his secretary as he just stated in his letter 'a bit low' but he wasn't recommending supplements). He also said he was going to take an antibodies check, one was AMAs, the other ANA. The ANA was negative, the AMA was said by him to be 'of a high titre'. He was diagnosing me with PBC. I was 46 at the time.

Apparently the AMAs can fluctuate. It tends to be the AMAs along with symptons and higher than normal LFTs plus another blood test known as the GGT that is apaprently to give some indication of liver inflammation (mine is not normal, higher and is expected to be with PBC).

You can also have normal LFTs but still have PBC. If this is so in your case then it might never alter and you'll live a normal life. My LFTs and GGT have never returned to normal in the alst 6yrs and I've been taking ursodeoxycholic acid but they did come down somewhat. I still itch but it has altered from whenn it was in 2010 which I t hink is due to the LFTs dropping with the urso. I tend to itch later at night until around 6a.m. every day. The itch and also fatigue is said to be of no real indicator as to how one is with PBC. Some start to itch and that is how they get diagnosed with PBC, others never itch and some go on to develop the itch.

[GrittyReads]

Hi,

So sorry that you are worrying, and also because I don't have time, right now, to give a full answer, but if you search on here for some recent answers of mine (Grittyreads) you will see posts to others like yourself, that cover most of what you are asking.

Simply, it's true that you can have AMAs, even a high titre (the level of the AMAs is not supposed to affect the chances or severity of the PBC, if you have it /get it). I've had AMAs for over 24 years and still no PBC, with perfect lfts, no symptoms, and good health otherwise.

However, as you have symptoms, it's more likely that PBC is a possibility, but your medics should be doing lots of tests to rule out both: all other possible liver conditions; and: all other autoimmune conditions, especially those that involve other sub-types of AMA (subtype AMA-M2 is the one associated with PBC). It would also be better to see a hepatologist (liver specialist) rather than a Gastro; and preferably a Liver consultant who specialises in PBC.

As others have said, PBC is slow progressing, there are treatments that help, and it is not at all the scourge it was decades ago.

Hope this helps, good luck.

[Calogia]

Your GI will be able to give you a diagnosis. Don't stress about it....I know that's easy to say but if you have it and get put on meds you're symptoms will ease.

So spend time with your kids and enjoy life. If you're to tired let someone else do the chores so you can rest.

I am stage 4 and still work a full time job and spend quality time with family and friends.

If you have it you can have it for years so just enjoy. It's a lonely disease but I think any auto-immune is.

Take care,

Calogia

[Saralou73]

All your comments have been so helpful, thank you all!

[Ter74]

I was "officially dx" in 2014 but looking back realize the twenty years prior I was misdiagnosed with migraines. I was a nurse in the US and myself had to look up the DX as I had never heard of it. I didn't drink nor do drugs and believe I worked through the asymptotic period and even as my first symptom occured which was RUQ Abd pain. Since 2014 I've been through a roller coaster of emotions. While my Chirrosis was staged last year at a 3 the Dr did get different readings. I went from telling NO ONE. To individually telling my two adult children and father then slowly close friends. I spent an entire year online awake most of the night due to Hepatic Encephalopathy symptoms. My Dr at the University of Penn was able to DX me she said when my ALP (Alkaline Phosphate) was always doubled while my liver enzymes stay relatively low. She then ordered the ANA which was positive and AMA2 which was elevated, which I was told confirmed the diagnosis. In my online research I've not found a lot of information on this rare disorder but I did see a strong campaign to change the name to Cholangitis. My question is this, it's my understanding this is known to be genetic ( and I just lost my cousin at 49 to PBC RIP Penny) and now there are lab markers to diagnose this asymptotic to REALLY symptomatic disorder, shouldn't I and other women with especially daughters ( as it affects women 10:1) so if they do have an elevated ALP and then go on to test positive for ANA and AMA2 so she can start Ursidol or whatever medicine will help to keep it at Cholangitis?? I've succumbed to the fact that I'm too far advanced and the things I can do to slow down progression however I'm very passionate about getting children of people with PBC tested. There seemed to be a push to change the name, however as I look at these posts I now wonder was it BC people can get diagnosed now at the asymptotic stage and possibley never reach Chirrosis or was it more the stigma attached to the word Cirrhosis. Is it recommended to get my daughter tested? This is my first post and I've spent many nights alone online researching and crying then laughing. The only advice I can give someone is live life!! That cruise you've been wanting to take but have put off. Schedule it!! Book it in advance and make payments. See the places you've always wanted to visit. I'm at a point in my disease where I can no longer work. However I can still do things to help. For anyone drinking loads of caffeine this was a biggie for me, STOP! Start drinking water. Remember the Serenity Prayer, ask for the wisdom to know the difference in what you can change. See any family you may have not had time to, especially elderly that may not be here much longer. Exercise, even if it's a walk. Open your curtains, enjoy the little things in life. I'm alone in this journey as my Mom passed from Breast CA in 2007 so it's nice to know other people are as crazy as me yet it saddens me at the same time BC I wouldn't wish this on my worst enemy. If I hear, you look great, you don't look sick ONE MORE TIME!! I just nod and say thanks even if I haven't had a BM in 3 days, I'm chock full of emotions inside from the encephalopathy, my joints ache and crack and I'm bleeding internally. That's still my answer now, nod and say thanks! If anyone is in need of someone to talk to I welcome it. I have a medical background and have researched this for 3 years now and have been told to look for clinical trials. So while I'm no expert I will do my best to find an answer or help anyone going through this devastating news to you while it seems your loved ones have no clue. Keep pushing ❤❤Terri

[JaneIng in reply to Ter74]

Terri, thank you for sharing your experience.

I too have itchy skin and achy muscle and joints for many years. It wasn't until Oct 2016 that I was tested for Hepatic antibody due to chronic GI problems. It turned out my AMA M2 was elevated, LTFs was slightly elevated with normal ALP and GGT. Ever since then my LTFs has been fluctuating between normal and slightly elevated. AMA M2 is slowly rising though. So far my doctor has not diagnosed me with PBC nor prescribing any medicine. My MRCP showed normal bile duct. Liver looks normal with a 1.8 cm cyst.

Do you know which genetic test is linked to PBC? I have MTHFR gene mutation and some APOe gene variance. Would like to get the gene test for PBC.

I don't know why doctor is not prescribing Urso. Wouldn't it be better to start taking Urso early to prevent it from getting worse? Could it be that Urso may cause other damages if used too early?

Thanks,

Jane

[Ter74]

From what I've researched it's the ANA positive and the AMA2 elevation that makes it a 95% or better chance. Of course that's along with the other labs and tests that led them to order those. They know something is inflaming your liver ( at times ) due to the fluctuations in your liver enzymes. One difference I see is my ALP level was never normal and is usually always double the high end of the range the lab is using. Unfortunately with that at times can become another diagnosis which I have Hepatic Encephalopathy which causes confusion, forgetting, slow reaction time and I can no longer multi task. So that's why I can't be for certain but I'm almost positive there is a correlation with high ALP and PBC. The other difference I see is that all my scans show bile duct dilation that keeps dilating. They have not started me on Ursidol either however I missed a lot of appointments due to fatigue. I see her Wednesday though and am going to ask her that very same question. I think your labs are telling them you have an auto immune disorder and your blood work is showing your liver is being inflamed at times. I would say they did not begin Ursidol BC they want to see if it may be some other auto immune disorder. I did find as well while researching that there are others that mimic the symptoms of PBC. I hope this helps somewhat and I will share my info from my Dr with you Wednesday. Thank you for your response. I've been alone with this years now.

[Saralou73]

There seems to be loads I need to know and understand! I'm still finding everything confusing!! I am also a nurse and I'd never heard of this condition until now, which frustrates me a awful lot! I finding work really difficult as well at the moment as I can't concentrate on anything, I'm also grumpy with my family!

I'm finding all the numbers and abbreviations mind numbing! And I can't even read some of the words. Ijust wish my appointment would hurry up with the specialist and tell me what I need to do if I do have PBC! And what I need to do to improve my symptoms and chances, i.e. Diet?

Sorry if I'm coming across really negative but I really am run down at the moment! And going mad with itching 😶

[Ter74 in reply to Saralou73]

I did not present with itching as my first symptom. I had pain that I had ignored for three years as I was working and a single Mom. The RUQ pain was my first symptom. One of my worst symptoms is the hepatic Encephalopathy. It slowly progressed from me thinking I was getting forgetful with age to me crying after work. I am no longer in nursing because of my HE flare ups and my Dr has medically suspended my liscense as I've found now you have a slow reaction time when flare ups occur as well. You do not come off negative at all to me. As a nurse in the ER and Labor & Delivery I loved my career. However my confusion from my ALP level always double the range I find it near impossible to multi task anymore. I can not talk on the phone and do anything else requiring my full attention. I can empathize with you wanting answers. This seems after finding this board to be an even rare and not informed in the US. I say this BC when you speak of the confusion and frustrations beginning at work and home it reminds me of how I felt when I was first figuring out what was happening and was DX with Hepatic Encephalopathy. I remember the first ER Dr to test my liver said to me your enzymes are a bit elevated but not anymore than mine would be after a good night of drinking. I learned by him saying that two things that your lft's fluccuate and I should've questioned more about that as I am and never was a drinker. So you definitely want to do the obvious things you would give advice to a patient with a disease inflaming their liver. I had to stop all the caffeine I was living off of, that I now look back and see got me through working and raising kids. The advice I was given for my Stage that I have the most trouble with is reducing stress. This is imperative. Figure out a way to give yourself time to relax however you do (meditate, a hot bath, a massage) etc. Keep up on your oral hygiene. It can cause dry mouth and with low calcium, any infection not taken care of gets into your blood while working and especially sleeping and those are poisons you don't want to damage your liver. Stop smoking and increase your water intake if you don't already do that. I was told to keep a low protein diet and no red meat. That may have more to do with the Encephalopathy DX as I'm not to sure. I hope this helps. And I have a question for you if you could help. I never had the itching bad other than around my neck where the little spider veins have appeared. About three nights ago my R arm started feeling like I had a sunburn against my shirt. As I took it off and rubbed it, I noticed it was only one area from my wrist to my elbow. I shrugged it off as I had surgeries in that arm for Carpal Tunnel and have nerve damage in that arm so weird sensations happen. Then last night I had forgot about it until around the same time it happened again only this time it's covering a little wider area. Now tonight I forget once again and sure enough my arm starts giving me a burning sensation and covering almost all of my arm from the wrist to elbow at this point. I'm seeing my specialist the first however I wanted to see if anyone ever heard of the itching being described as a burning sensation. It's no way an itch and I can barely feel it unless something touches it but it only starts up at night. I know I sound nuts and at this point I'm sure I'm diagnoably 😜 crazy but maybe someone heard something. Thanks again for your input. I just found this site and it's given me a hope I was starting to lose.

God bless and I look forward to talking again!!

Terri