PBC Stage 0, no medication

[Beatris03]

Hello again! Another question for you since you're ever so helpful Is there anyone who has been diagnosed with PBC and it's really early stages, as in it's dormant and the doctor has decided not to give you URSO because it wouldn't help yet. I've been diagnosed in April 2018, I went nuts, as in I really struggled mentally but physically I'm fine, never been better. Am I the only one with PBC and not taking URSO? I'm only taking Vitamin D, magnesium citrate and zinc...every day. Thank you.

[Skypony]

Hi Beatris, this is an interesting question. Whilst in general it’s better not to take unnecessary medication, I think I’ve read that the usual protocol is to start patients on Urso when there’s a firm diagnosis. I expect others who know the good practice guidelines better than I do will respond.

I’m not sure about ‘dormant’ and ‘wouldn’t help yet’ - are you seeing a hepatologist well-versed in PBC? I don’t want to worry you because this is a long game we play, and I know for certain that I went 10 years after diagnosis before starting treatment, and my condition still seems to be in the early stages.

I want to say well done to you for being so brave in getting over that initial panicky stage, and I’m so glad that you’re feeling well.

Best wishes

[Hils67]

Hiya, my GP put me on URSO as soon as my LFTs and AMA positive result came in. Her opinion was that it was “probably” PBC and therefore the URSO was precautionary. I don’t think it does any harm if you haven’t got PBC.

As skypony says it’s a long game and early diagnosis is better all round.

Glad you’re feeling well, hope it stays that way zxx

[Hidden]

I have. While my gastro hasn't given me a "stage 0" diagnosis he has diagnosed me with PBC and says that I don't need urso at this time. I am AMA & ANA positive, have PBC symptoms (itchiness, fatigue, dry eyes & mouth) and have high GGT levels. I don't however have high ALP and my fibroscan is still in the normal level at 6.9. I'm young, in my early 30's and my gastro said that I can wait until my ALP rises above normal to start urso.

[Beatris03 in reply to Hidden]

Aha....Thank God there's someone else who hasn't been given URSO. I was seriously considering booking an appointment just to tell him off. I guess he knows what he's doing 😏 I am AMA positive and high GGT levels high. What's ANA? I do have dry eyes. For many many years actually. Out of curiosity...when you say dry eyes..does it feel like a burning sensation, as if you rubbed your eyes with onion and it goes away after a minute? I even had to stop driving because the pain can start anytime and i need close my eyes and rub them until it goes away. It burns so badly I can't see. I use some eye drops but not helping much. ☹ And one last question, how long ago were you diagnosed and stayed without medication? The longer the better I guess, that means it's not progressing. I'm also in my thirties. Best wishes to you and thank you 😊

[ninjagirlwebb in reply to Beatris03]

ANA is antinuclear Antibodies which probably is part of your labs. It is probably negative for you; otherwise your doctor would tell you. If you have a copy of your labs, you can likely see it on there.

I have had dry eyes for a long time now as well. They are just very dry after I wake up. But feel better after I wash my face & as the day progresses. There is an overnight eye gel Geneal that you can put in before you go to sleep to lubricate your eyes. I stopped wearing contacts because of the dry eye issue.

I am sure Hidden will also share her thoughts on this.

Cheers.

Haley

[Hidden in reply to Beatris03]

My eyes burn all day long and I do find it difficult to drive, I keep drops in my car! I have to use drops at least 4 times a day to get relief but I often forget.

I began my autoimmune journey in the fall of 2017 but was only diagnosed with PBC about 6 months ago when I finally got in to see the GI. I am also seeing a Rheumatologist who thinks that I have another autoimmune disease but doesn't have enough information to give me a diagnosis on that.

[periwinkle88]

I was diagnosed at stage 0 almost 7.5 years ago. My hep decided not to start me on urso right away because I didn't really have symptoms, my alk phos was solidly normal, etc. Instead he had me monitor my LFTs every three months to make sure nothing changed. After four years of monitoring, my ALT and AST increased a bit (just over the normal range), and while my alk phos was still low, we decided it was time to start the urso. As of a couple of months ago, my fibroscan showed me still very early stage, with a score of 4.5 kpa. The urso brought my ALT and AST down, and my alk phos is still normal. My hep sees proportionally a huge number of PBC patients - over 250 he said - and so I trust he knows what he's doing. He felt like the urso wouldn't benefit me when I was so early stage. It is a lot to wrap one's head around. Sorry you're going through this.

[Beatris03 in reply to periwinkle88]

Thank you so very much for your reply. After reading so many horrifying stories, it feels like Christams reading something positive as well. I'm hopeful that my PBC won't progress quickly, I've changed my diet, I believe food is the best medicine. So in your case after 4 years your AST and ALT levels increased, so you didn't take URSO for 4 years. Have you changed your eating habits in the meantime, did you give up anything? Dairy, gluten? Did you take any supplements? And finally, if you don't mind me asking, how old were you when you were diagnosed? Best wishes 😊

[periwinkle88 in reply to Beatris03]

I was about 45 when diagnosed. Yes, I have adjusted my diet. I was gluten free and cow dairy free for the first several years, then transitioned to the autoimmune paleo diet (which I modified to eat what works for me - meaning some extra restrictions, and also I added back other foods that worked for me). I am considering adding back gluten free grains right now. I also have Hashimoto's, and just had my antibody levels tested and they were completely normal for the first time since I discovered I had it eight years ago. I believe diet and low dose naltrexone put the Hashi's in remission. And yes I do take vitamins, and also low dose naltrexone (which helps modulate your immune system and can be helpful for autoimmune diseases). It sounds like you're on the right track! Good luck!

[ninjagirlwebb in reply to periwinkle88]

For some reason, thought that if your body produces antibodies that it can’t be reversed. What does your doctor think about this? Does it mean your AIP diet pulled it in its tracks. Very interesting.

In the same vein, if that is the case, perhaps the same can be addressed for pbc. Food for thought (pun intended). 😉

[periwinkle88 in reply to ninjagirlwebb]

I haven't spoken to my doctor about the antibodies yet, but I have seen multiple times online anecdotal accounts of people on the paleo autoimmune protocol diet significantly reducing or eliminating their thyroid antibodies after following the diet. I saw a nutritionist recently (trying to lose weight brought on by ursodiol) and she talked about another client who she had worked with and was able to bring their hashi's antibodies down to normal using the AIP diet. She encouraged me to stay off grains because of that - but I struggle to eat enough carbs due to other food intolerances. So, my doctor agreed to get a baseline on my antibodies before I started grains again, and then we can retest after I eat them for a while and see what happens. Now that I see I'm in the normal range I'm reconsidering! I'd like to keep things where they are.

[periwinkle88 in reply to ninjagirlwebb]

Also, I don't know if my diet is slowing down my PBC, but I do know I'm not progressing very quickly - probably still stage 0 or barely stage 1. Alkaline phos has never been above 82 with or without ursodiol.

[ninjagirlwebb in reply to periwinkle88]

That’s great on the pbc. You probably only have a slight case of it!

[periwinkle88 in reply to ninjagirlwebb]

Yes, I was told at my last hep appt that I have a mild variation most likely and that is why my alk phos is low and it's my ALT and AST that are a bit finicky.

[periwinkle88 in reply to Beatris03]

Beatris - I wanted to add that though I didn't start Ursodiol right away, I wish I had. I actually feel better while on ursodiol, even though I'm still very early stage. And while in very early stage maybe it isn't doing much to help, but maybe it is. It probably won't hurt, in any case.

[Beatris03 in reply to periwinkle88]

What about all the side effects? Weight gain, hair loss....I don't know if i should insist to be given urso. Thank you

[ninjagirlwebb in reply to Beatris03]

Urso has possible side effects, but that does not mean everyone gets them. Truthfully I believe if you are diagnosed with pbc, you should be on urso. That is to be on the safe side. But at the end of the day, it is a decision you make with input from your doctor.

[HealthyChik in reply to Beatris03]

Hi Beatris03,

Here's just another person's perspective..but I was diagnosed this past summer and I obviously needed the Urso. My lab values were only slightly out of line, but my Fibroscan showed stage F2/F3 fibrosis. However, a recent MRE showed only F0/F1, so I'm not really sure where I actually am on the fibrosis at this point. I started on Urso in September after seeing a hepatologist and I'm thankful to say I haven't experienced any side effects and my labs are much improved. I was also deficient in Vitamin D, so I'm not sure if it's the Urso or the Vitamin D, but I feel so much better. Maybe I was experiencing some fatigue and didn't realize it. I'm not implying you need it, but don't be afraid of the side effects. It may not bother you at all. Best of luck.😊

[periwinkle88]

Ugh! That sounds rough. I feel crummy whenever my TSH creeps up over 2.0. I'm not sure if your endocrinologist will be educated enough about the AIP diet to have good advice. Many MDs don't think diet has any connection. My naturopath works with me on this stuff, but I'm lucky because my hepatologist is also very in the loop about AIP, low dose naltrexone, etc. and very encouraging. I believe he is the exception with MDs, however.

[ninjagirlwebb in reply to periwinkle88]

Thanks I will also ask my hepatologist what he thinks. He is pretty open to discussion. But I tend to agree with you regarding MD’s & alternative medicine. Still I trust my MD’s because you need to have faith in them; otherwise, this stuff we are going through is just very hard on the psyche.

Enjoy your Sunday!

[periwinkle88]

I was one who wasn't put on urso until 5 years after diagnosis. And yes, I believe the urso is helping me, absolutely. Wish I had started sooner because I feel better on it.

[ninjagirlwebb in reply to periwinkle88]

I suspect I had pbc for a few years (~4) prior to diagnosis. It was my fault for not pursuing it further when the issue manifasted. It was also because I didn’t like the hepatologist I saw at the time & dismissed what he told me. So I just had my labs monitored.

A few years later, my PCP pushed me to consult with another hepatologist who convinced me to have a liver biopsy & was diagnosed. Every now & then I wish I was on urso earlier but it is what it is & I can’t re-write the past.

Now I think I just want to tell people if you have any abnormal labs to pursue it until you find out why & to address it. Would also tell them even if your doctor dismisses it, to be relentless & advocate for yourself. Wisdom gained!

[periwinkle88 in reply to ninjagirlwebb]

Yes, I have learned to advocate for myself with my health issues. I have also learned to research everything myself. I'm the PITA patient who has an opinion.

[ninjagirlwebb in reply to periwinkle88]

Good for you!!! Keep at it!!!

[DonnaBoll Administrator in reply to periwinkle88]

You are on it now..that's what is important!

[Hidden]

Hi Beatris, I sympathise with the struggle over accepting that you have PBC, and I can understand the unease of not knowing for sure what is the right course of action, wanting the best outcome yet slightly hoping that you will be told you don't need any treatment! We all have probably been there! My understanding is that when diagnosed through testing according to guidelines for PBC , best practice would have your doctor prescribing urso at the dose appropriate for your body and monitoring your response to this to establish that you are responding to it. My understanding is that there is no better time to start with this therapy than while you have no symptoms to keep it that way.

Please ask PBC Foundation if you have any doubts about whether you should or not be on this med: they are absolutely reliable in keeping totally up to date on the situation we are find ourselves in, and the guidelines and protocols on any known aspect of PBC treatment. Very best wishes, thank you for sharing!

[Equestrian]

Hi Beatris, I was diagnosed with PBC/PSC at the age of 37 (2003) through labs and a liver biopsy. I had infiltrates of immune cells throughout my biliary tract that had caused a bit of sclerosis. I also had a stent inserted into my narrow common bile duct. My symptoms were puritis, fatigue and slight RUQ pain. I was fortunate enough to see both Dr Mark Zern and Dr Eric Gershwin at UC Davis. Dr Zern was the head of the entire hepotology/gastroenterology/liver transplant division of UC Davis. Both he and Dr Gershwin are pioneers in the study of PBC/PSC. In 2004, became part of Dr Gershwin’s PBC genetics study and immediately started URSO and milk thistle. As a result, my second biopsy showed no infiltrates and my symptoms disappeared. (Albeit I have lupus also and fatigue is often daily). Although I’ve always had a positive AMA, some doctors even questioned I had PBC/PSC. Fast forward ten years and my insurance refused to pay for my URSO. Given that I had minimal symptoms and my labs were decent, I decided to go off URSO....without telling my hepatologist. What a mistake that was. Within a few weeks, symptoms came back. After three months, the aching and fatigue sent me to bed for days at a time. I attributed it to Lupus, until my annual liver doc appointment. My liver labs were horrible. I got my URSO paid for and after 6 weeks of taking it, I had my labs retaken. I was close to normal. Although she wasn’t happy with me for going off my meds, my liver doc said at least now we have a clear diagnosis. I’m not giving you this information to be negative or morbid, this is just my experience: As a really strange coincidence, my step-mother Maria had PBC. She didn’t start URSO until her 50’s. Maria always told me how fortunate I was to have found URSO so young. I never felt lucky just by having the disease and it kind of offended me. That offense went away from watching her slow, horrible death of liver failure. (Not to mention many others over the years on PBC.org). One of the last things my step-mother said to me before she died, was to ‘take your URSO whether you feel you need it or not’. We don’t know a lot about PBC/PSC, but we DO know that URSO can slow it down. I compare a positive AMA to high blood pressure. You may not have symptoms from high blood pressure and it, nor AMA, will kill you. But over the years, the damage to the cardiovascular system from HBP will end you. So we take medicine to prevent that damage. I say, maybe the relationship between a diagnosis of PBC/PSC with AMA and URSO MAY be similar. AMA won’t kill you and may not cause symptoms. But perhaps, over the years it’s damage will. URSO is a very safe medication, why take a chance with your liver? Again, not to be negative or morbid, this is just my experience. Good luck to you! I wish you the best!!

[Mnoye]

Hi, I was diagnosed 3 years ago, had a biopsy and regular scans and blood test, but never any treatment. Only just been told by my consultant that they are going to start me on meds now x

[Beatris03 in reply to Mnoye]

Thank you. If you don't mind me asking.. How old are you and what stage? I'm seeing my doctor on 25th, my blood tests are normal, i wonder if he'll put me on urso. Why are starting taking meds now? Has anything changed? X

[Mnoye]

Hi I’m 46, not sure where you are but I’m in Essex England, my GP doesn’t know too much about PBC so I’m seen by a consultant who doesn’t really tell me much, I’m guessing early stage, and every time I go he says my levels have gone up, so now he wants to start me on URSO, a lot of what I read confuses me, like what tablets we can safely take, can we drink, I need to start HRT but I read somewhere we shouldn’t take the tablets but consultant has told me it’s fine to take. I just find everyone seems to say something different. The only thing I don’t do is look things up on the internet, cause some of that was just so scary at the beginning x

[Beatris03 in reply to Mnoye]

I'm in London. I have a great GP, she does everything I tell her though as I have more knowledge about PBC than she does but she's very supportive. Because of her I had an MRI scan done, the fibroscan, the ultrasound, all within pretty much weeks from being diagnosed.

I know what you mean about all the info online, it's overwhelming, it has caused me alot of anxiety. I'm not gonna lie, this disease turned my life upside down, mentally that is. I'm still learning.... I'm thankful for this forum, it helps. I've struggled with a cough for the last 2 weeks. All I'm taking is paracetamol because I was told is safe. All medication comes with a warning if you have a liver disease so I'm too scared to take them.

I suggest you do read about it even though it can be scary. Go to your consultant with a list of questions. That's what I did. If you don't trust him, ask your GP for a referral to a different one. Take care and don't lose faith. We'll die with it not because of it. Gotta stay positive and optimistic. Xxx

[DonnaBoll Administrator]

Take Urso! You are very fortunate to be diagnosed early in the disease. This usually means all the better response to taking Urso. It is not in your best interest to wait to take it. You don't need to wait until your numbers start going up. Maintain optimum bile duct function with the least amount of damage. If your doctor believes you should wait even with a definitive diagnosis, I'm sorry he's wrong. Another doctor might be in order.