New to PBC

[14isla]

Hallo just found out I have PBC , didn’t even now anything about this Right now cannot get my head round it , don’t no what I do now

Would be nice if I could get some advice please

[P13jne]

Hi 14isla I know the turmoil you’re going through, just give yourself time and take a deep breath. There’s a lot of people on here and PBC Foundation to help you. It’s only since Feb 2019 that I was diagnosed too. Initially they were looking down the cancer route as my lymph nodes were huge in my neck and had some removed which were due to my autoimmune reaction to PBC.

It was a very worrying time, however, I’m still here and have a wonderful family to help me.

Once you get over the shock of the diagnosis, there are consultants who will guide and help you as you start the journey to try and keep it under control . You can do this, stay positive my lovely. Xxx Jane

[14isla]

Thank you so much , that message means a lot to me , cannot get my head around it all yet Hope you are well

X

[P13jne in reply to 14isla]

14isla ye im good, you'll find during your journey how to listen to your body and not push it too far. Im here to help if I can my lovely xx Jane

[14isla in reply to P13jne]

It’s good to no you are ok , thank you for being there for me x

[ninjagirlwebb]

When I was first diagnosed with pbc, it was after a lot of turmoil and getting a 2nd opinion on my biopsy. I really didn't believe it, but I had to slowly face the facts and trust my doctor.

I see a hepatologist who specializes in liver disorders. I spoke to him at length after the diagnosis and he said, don’t stress as that makes any autoimmune issue worse. He also told me, don’t worry; leave the worrying to me.

He is one of the most empathetic doctors I know. Always accessible if I have questions and never rushes through any of our appointments. I see him once a quarter and do labs. I take my urso daily and eat a clean diet.

I am calmer these days because I can’t control any of this. And worrying won’t change any of this. I am just grateful there are meds to slow down its progression. Also grateful that I have a competent and caring doctor.

Life is never perfect, but we deal with it the best we can. Try to focus on living your life and not worry. Enjoy it!

My doctor said patients that respond to meds have the same life expectancy as the normal non pbc afflicted population. He said to think of taking urso like it is just a vitamin and then you are fine.

Hope this helps. When you are ready, write down all your concerns and questions and discuss it with your doctor. You will be fine.

[Stub007 in reply to ninjagirlwebb]

That’s wonderful, solid advice, Ninjagirl, and it’s great to see you participating!Don

[Buddy2017]

Hi , try not to panic ( easier said than done , I know ) Don't go Googling PBC because you'll find a lot of incorrect information . Join the PBC Foundation .. pbcfoundation.org.uk/existi... and you will get all the information you need . I'm 10 years since being diagnosed and have got no worse .

[Chris21]

Hi 14isl, I too didn’t know anything about PBC, I have lupus and so have regular blood tests and it was this that showed the results we’re going g wrong. The GP actually made me concerned more by saying if my eyes or skin started to go yellow then to tell them immediately! I don’t feel any different to usual. I went to see the consultant, who put me on the urso tablets and haven’t had any problems since (touching wood 🙂) was told I need to be on them for life, but hey! If it keeps it at bay and it’s just another addition to the rest that I have to take…..I have an annual check up with consultant. I was diagnosed 4years ago. Take your time adjusting to your diagnosis and the advice the consultant gives you. 🙂

[Lu11 in reply to Chris21]

Hello, did you say you have Lupus and PBC? My daughter was diagnosed with Lupus but then told it’s not Lupus. I’ve found out I have PBC like my Mom and suspect she has PBC as well. I was wondering though if it’s possible to have both?

[Chris21 in reply to Lu11]

Hi Lu11, yes I have lupus and sojgrens as the main autoimmune disease. If my understanding is correct it is having lupus that has caused the PBC as lupus can affect other parts of your body and sojgrens the salivary glands.

[Lu11 in reply to Chris21]

Thank you for replying. I suspect I have sjorgrens and some thyroid issue as well. I have appointments with specialists next month. My main symptom is bone/muscle pain. Do you experience that? Thank you

[Chris21 in reply to Lu11]

Yes I do, as well as fatigue and brain fog on some days. A lot of these auto immune things seem to run alongside each other.

[Lu11 in reply to Chris21]

Yes you’re right! Thank you so much and I hope you’re doing well!

[islandanonymous in reply to Chris21]

Chris, did a doctor tell you that lupus caused the PBC? I never heard that before.

[Chris21 in reply to islandanonymous]

Can’t remember if he said caused or most likely.

[islandanonymous in reply to Chris21]

Thanks, Chris. It seems as though a lot of autoimmune diseases are linked. Best of luck to you.

[Chris21 in reply to islandanonymous]

Hi islandanonymous, i looked into my family autoimmune disease as was fascinated on how they can be linked but all can have different issues. My mum had RA and I’m sure she had lupus ( but was hard to prove) my sister had MS, I’ve lupusSLE, sojgrens, raynauds and PBC , one daughter has raynauds and the other has sojgrens, coeliac and diabetes, one granddaughter has HMS and coeliac and another has diabetes. It’s definitely in the genes!

[islandanonymous in reply to Chris21]

Hi Chris, wow, that's quite a family history you have there. When I was a kid in the hospital just before my lupus diagnosis, they told my parents I might have RA. I don't know why I was eventually diagnosed with lupus because I didn't actually have any symptoms (like the butterfly rash). My own (non-medical) opinion is that all these diseases begin with inflammation. In my case I believe it was my high-sugar diet that caused it. I won't go into detail but it was pretty bad. It boggles my mind that doctors never even ask about our diets or lifestyle habits. So despite possible genetic connections, I firmly believe that we can influence our outcomes by taking really good care of ourselves...the only problem I see is that we often don't get clear direction from our doctors. They seem to prefer prescribing drugs once a problem has occurred rather than getting into any preventative measures.

[islandanonymous in reply to Lu11]

How strange. I was misdiagnosed with lupus when I was 10 and took prednisone for 2 years. Now decades later I've been diagnosed with PBC. I was told that my mother having had Crohn's is a genetic link.

[Lu11 in reply to islandanonymous]

Wow! Yes I do think doctors misdiagnose especially when it comes to PBC! Is your PBC under control? The only reason I found out is because my Mom had it! I pushed my dr to test more and when I saw the results it made sense. Then I started thinking that the reason why they diagnosed my daughter first with PCOS and later with lupus (but later said no lupus) is because most likely she too has PBC.

[islandanonymous in reply to Lu11]

Yes my PBC is under control. My elevated liver enzymes were originally ignored by my doctor for at least a year. By the time I pushed and was referred to a gastroenterologist and had a fibroscan, I had developed cirrhosis. I believe my PBC may have been kicked off by a Chinese herbal I took for about a decade for insomnia...turns out it was banned in Canada because it could cause brain, nerve and liver damage. Personally I have always believed I was in so much pain when I was a kid was due to my really high sugar intake. I think it was just inflammation, not lupus. They had a hard time diagnosing me and I spent about a week in the hospital first undergoing all these tests...

[Lu11 in reply to islandanonymous]

Your story is a perfect example of how doctors sometimes fail patients. Mine never tested for antibodies even after I mentioned that my Mom had PBC! That’s why I try to educate myself and pass on the info to my daughters.

[islandanonymous in reply to Lu11]

Yes, good for you...do all you can to help them. We have to help ourselves as much as we can. For instance, with diet I have been left in the dark to fend for myself. So I ordered a bunch of books on cirrhosis, PBC, and cookbooks for the Mediterranean diet to inspire me. It has helped a lot. And sites like this one are invaluable, of course. Unfortunately I only discovered this site a few months ago.

[butterflyEi]

As P13jne has said The PBC Foundation (free to join but donations always welcome) is the go to place for information. They have been the most amazing support to their members throughout the whole of the pandemic keeping in touch with those who needed using facebook live and click meetings. On Thursdays at 2 p.m. BST there is usually a Q&A with hepatologists. If you are on Facebook like their page and gain access to all the previous information but if not most of the video clips are being up loaded onto the PBC Foundation's TV on You Tube. On their web site there is a "newly diagnosed" section. They have an App which is a useful tool. And on here there are a bunch of oldies like myself who have personal experiences to share.

Always make sure to get a copy of your blood test results. These help build a picture over the years. The results can be uploaded onto the app, I have not totally got my head round the app but I am not that IT minded.

For myself, diagnosed in 2006. I take my meds and my PBC is well controlled. I am an itcher which is a pain but it is for the most part controlled by the medication.

Sometimes if you read from Google you will get old informatioin so best to get your up to date informtion from the PBC Foundation. There are several facebook support groups as well.

Once you have been taking your URSOdeoycholic Acid for a while you will get used to the idea of PBC just being there, eat a healthy well balanced diet (no real dietary advice just common sense from the professionals) however some find that red meat or sweet things cause them to feel unwell. For myself I have a diet rich in vegetables and fruit, pulses and protein in the way of chicken, fish, eggs etc but rarely eat red meat, I don't eat chocolate but I have the occasional glass of wine. Be careful of processed foods from the supermarket and high salt content in take away foods. It is best not to have Cola, Lemonade but do drink plenty of water. Keep you weight in check - I put on 20 kilos then had to lose it, the weight crept on and I did not really notice until it was a big problem for me. If you have fatigue then the Foundaton's mantra is "movement is medicine" and if you have the so called itch of PBC do not be fobbed off by doctors - there are medications to help.

Your URSOdeoxycholic Acid will be prescribed relative to your weight.

When you are ready, ask your questions lots of lovely people on here.

best wishes

[14isla in reply to butterflyEi]

Thank you , been on the medication since Friday , I’m so much pain with the bowl movement, so worrying what is wrong , this is to much at the moment. But I’m very thank full for your message x

[ginabean]

Hi 14isla I was diagnosed with PBC in May (I’m 42) but my doctor thinks I’ve had it since at least 2019. I went on Ursodiol right away and got my blood work redone a few weeks ago. All of my levels are returning to normal and I already feel a noticeable improvement in my energy levels. I still have acid reflux pretty bad at night but otherwise I’m ok. I was a little stressed at first with the diagnosis but overall I am feeling much better. Hoping the same for you!

[Stub007]

You have the thoughts of a lot of experienced PBS patients at your disposal. This coming January, I will be 83. Shortly after I turned 80, I was diagnosed with PBC, which was confirmed by biopsy.My gastroenterologist put me on two 500 mg tabs of Ursodiol daily, which caused my vital readings to return to normal.

Currently I ride my bike—-weather permitting—-for 15 miles on the city biking/hiking trail. I love it. During inclement weather, I go indoors to the recumbent bike at a nearby gym, which is open 24/7.

Although I haven’t discussed this in detail with my doctor team, my belief is that the PBC will not shorten my life. My most noticeable symptoms are dry eyes and itching.

I am male, 5’7”, weighing 131; my BMI is about 20.

Life is good. I encourage you to use this website, work with your doctor, address your diet and lifestyle—-and have a wonderful life.

All the best,

Don

[14isla in reply to Stub007]

Thank you so so much

[Roz49]

I know how you feel it is a shock isn’t it, but as time goes by with the right medication you start to feel better, I hope your have a good consultant they will guide you, Also take vitamin D and vitamin supplement as the liver doesn’t absorb the vitamins properly . I hope you begin to feel better ❤️‍🩹

[14isla in reply to Roz49]

Thank you I will do this , such a shock x

[Roz49 in reply to 14isla]

It is a shock, but once your on ursodeoxycholic you will start to feel better, it will take time , It is manageable make sure you manage your sugar levels too, but your liver at the moment isn’t absorbing what it should , stop and have a coffee and a biscuit.

[Odieweb]

I'm sorry to hear you are joining our special club, but on the other hand I'm glad you've found this supportive group. You have been given lots of advice already, so my two cents worth is don't worry and googling doesn't help. I know as I did just that as it is a rare disease to your doctor likely will know little about it, and you may not get lots of time with a specialist. If you look after your general health, eat cleanly, reduce stress and exercise, this will all help. And take the prescribed medication as it becomes routine and will slow down any advancement of damage to your liver. We are all ages and all experiences in this group, and the PBC Foundation based in the UK is very helpful.

[14isla]

Thank you so much means a lot x

[Lowestoft1956]

I was diagnosed 7 years ago and I am doing ok. I take Urso every day and do not think about the disease very often. I was terrified when I found out I had this disease but that was caused by looking on internet.