Just found out I have PBC

Hi there

I am 36 and I have just found out I have PBC. At this moment in time I am in complete shock and the doctors say don't worry. Ha well easy for them to say. I think I have been in denial as it began in 2013 when I started with a rash on my chest. They took a biopsy and it was confirmed I had hives. They also did a blood test and it was confirmed I was AMA and ANA positive. I went to have further blood test and they saw there were slightly raised LFTs. I had a ultrasound which came back clear.They then check my blood works over a period of two years and they stabilised. I have just had my second child and had my routine check up and my LFT are through the roof. Confirming I defiantly have PBC. I have had pain on my right side on and off for a year and slightly dry eyes. During my pregnancy my symptoms subsided and it appeared that my antibodies were negotiate. So that has confused me. Now at the hospital for further blood test. Very concerned as I have two very young children and I want to be able to run around with them and be in there lives for a very long time. I just want to reach out to people as I I am feeling very alone at this moment in time. Any advise is welcome. Thanks Emma

16 Replies

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  • Hi Emma! I am 36 with PBC too. Don't worry about not being there for your kids! It is very likely that you can have a normal life expectancy. There is a lot of outdated and incorrect information out there that gives us 10 years to live, but that is not true at all.

    So far as the symptoms and blood test results fluctuating up and down, that is normal especially when you add pregnancy to the mix. Autoimmune antibodies can be calm and managed and in the notmal ranges, or they can spike up in numbers and cause more symptoms.

    You are not alone. This is a good community here. Keep us posted!

  • Thank you so chynablue that has given me the positive step I need to hear right now. You read so many horror stories and I just want try and see the positives in this situation. I had my new results and the LFTs are coming down. my consultant has said they may well be elevated due to my pregnancy and because my immune system is all out of balance still. I am now going to take the urso 2x500 a day. I am a firm believer in diet and I know this can have positive effect on health. So I hope the combination of the urso and life changes will keep the fire in my body calm. Thank you for your kind words it means a lot.😀

  • Hi Emma.

    I work for the PBC Foundation. I would invite you to give us a quick call and we can help you directly.

    My mother was 37 when she was diagnosed. That was 21 years ago and she is still going strong. I have so much information I would love to share with you so please get in touch.

    Robert.

  • Robert could I speak to someone?

    I'm 30 just diagnosed and scared stiff of leaving my baby boy and partner x

  • Hi Robert

    Thanks wonderful to hear. Yes please shall I PM my phone number to you. Let me know

    Regards

    Emma

  • Emma i will send you a direct message just now and give you contact details.

    Best Wishes

    PBC Foundation

  • Hi Emma I too have Pbc and I'm aged 42 with two young children so I know exactly how you are feeling. I found out only 2 weeks ago and although the initial shock is wearing off I am still very scared for my future cause like you this is a whole new world for me too and one I want to run from. I'm due a biopsy in a couple of days to confirm Pbc and stage it. I don't have any symptoms at all yet which I'm thankful for. I too was told by my consultant that because I was young ish and well in myself this would not cause any problems for decades and it's something you die with not from which is what I hang onto. My alt and ggt are real high (alt 421) ggt (216), what were your readings? If you need to just chat or compare notes then know you are not on your own, take care x

  • Hi Bellalou

    So sorry to hear your going through the same thing it really feels like a nightmare but try and take a day at a time that's how I am dealing with it all at the moment and trying to find all the right and positive information I need to live with this condition. My consultant said exactly the same thing to me that it's something you will die with and not of. It's good it's detected early so to get it under the best control you can. My ALT was 170 and has come down slightly with the last test. I just started to take the Urso so hopefully it will stabilise. I will go again in the new year for checks and a scan to check the bike ducts. lets defiantly chat it's always good to know your not alone in this process. pm your details. Take good care and hope to speak soon.😊

  • It is very scary, I walked around counting to how many years I thought I would have in life...diagnosed 3 years ago. However, there is the medication Ursodiol(which I am on, and I am now asymptomatic, as well as a new PBC med coming out in the USA 2016, not sure when it would be out in Europe.. I went around saying I would not make it to being an old lady , BUT when my Dr. said I have no symptoms and med is working and then said "You are not going to die from this...Smoking is going to kill you...I was so happy bc I can stop smoking (next month day after my birthday!!!) I totally understand how you are feeling, advances are being made like the new med....wishing you good health and a little piece of mind.... Good luck Emma!!!

  • His Emma. I was exactly the same as you when I was diagnosed last year at age 32. I kept reading things online about 8 to 10 years life expectancy and realised that I was fairly young to be diagnosed compared to others. I remember feeling that 10 years was maybe a long time for some but nowhere near long enough for me with having a young child. The more I have read and gained information from this forum the better I feel. I take urso every day and watch my diet and I am feeling pretty good now. I feel more in control and confident that I will be here for a long time. I pray for advances in medicine or a complete cure one day but until then I just watch my lifestyle. X

  • That's exactly how I feel. I'm 30 feel like my life is just beginning and don't want to die in ten years!

  • Hi Chazzy

    Trust me please don't read the Internet it's has a lot of outdated information. Even the name has changed to Primary Billary Cholangitas as Pbc does not always necessary develop into cirrhosis. So keep that in your mind it helps me a lot. You will see on here the information is way more accurate from wise and very helpful people and the likelyhood is you will live a long and happy life.

    I know the feeling when you first find out it is difficult to get your head around but please please give your self time to read good realiable information like here on this forum and speak to your liver specialist.

    I am a true believer in diet and holistic approaches when it comes to healing your body. So try to eat good take care of your body and give it some well deserved love.

    Also great to speak to Robert he's great and has a lot of information that will give you peace of mind and a much more positive perspective.

    Take care lovey

    Emma

  • Thank you so so much. What can I eat so scared to eat anything incase it makes me worse

  • Take a look at the ph miricle book. Very insightful. I have become vegetarian and I don't eat dairy. Cut out all processed foods and eat as much whole foods And fresh fruit and veggies as possible. All the foods that are kind to your body. Xx

  • I'll have a look at that. Cut out all fats and eating a lot of fruit and veg. Just miss the occasional chocolate!

  • Sounds like a good route. If you miss the chocolate the dark choc 70-80% is a good alternative. There are plenty vegan choc recepies X

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