New to group : Hi to all... I've just been... - PBC Foundation

PBC Foundation

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New to group


Hi to all... I've just been diagnosed with pbc and autoimmune hepatitis... Its been a terrible shock and I'd love to hear from anyone in the same situation as me. Thankyou in advance feeling quite lonely at the moment although I have an amazing partner..

32 Replies

Hello and welcome.

I know it is another registration process but I would thoroughly recommend you contact PBC Foundation, if you have not already done so.

We host this forum but we can also help you directly. Joining us is free and opens up a whole world of information.

We support thousands of patients around the world. We would be happy to speak to you directly: either by phone of in a video call.

I can imagine this is a frightening time for you, but I am sure once you have the information you need, you will be reassured.




How do I do that?

Did you click on the link above?

Happy to speak tomorrow. Feel free to send me a direct mwssage.

Speak tomorrow.. Thankyou so much

Hi, welcome! Definitely get in touch with the PBC Foundation they are fabulous. We have all been where you are now 🤗

Thankyou for reply. Very kind of you. Means the world. Much love traci xx

Hi and welcome. It is such a terrible shock when you are first diagnosed, I can definitely relate to that. 6months in, I have real up & down days on how I’m feeling about the diagnosis. It really helped chatting to the PBC Foundation and reading the support material they have really makes you feel less alone. I totally get you, I have a supportive partner but it’s you that’s going through it. I don’t think it’s ever a good time to receive this diagnosis but during a pandemic it’s even tougher. Stay strong and reach out when you need to. I find this site supportive in just reading even if you don’t post often. I hope you find some comfort in you’re not alone in this and it’s normal in how you’re feeling. Take care x

Thankyou for reply. Means the world to me. I'm not alone after all xx much love traci

Hello... How are you doing today. I'm having a bit of a bad day.. Just a bit low and fed up... Very tired. Do you work?? I doubt I'll be going to work again. Suppose the lockdown is just the same for everyone. Hard not to be outside even if its just for a sit down in a nice park!!! Just wanted to say hi to someone who knows how I feel xxx thanks xx love and hugs traci x

Hiya lovely. I’m doing ok today thank u so much for messaging, but ask me last week and I had a few down days. I felt very tired like you today. If you want to direct message me anytime it would be nice to chat. Sometimes you just need to chat to someone who might be feeling the same don’t you. And chances are I probably will be. I think being so soon into diagnosis and having worries if the medication is working and having your body get used to it takes some time. I work from home since all this but I’ve got a 3yr old so it can be difficult feeling so tired and stuck in the house. I find a nice bubble bath and candles always makes me feel better about the day. Xx message me anytime

Sal x

Ahhhhh that's so nice of you x I'd love to keep in touch. Bet your little one is lovely. Having someone to connect with is something I find very comforting. Thanks again traci xxx

Anytime at all. And thank u too xx 😘

Just wanted to say that isn't life strange in a way where you get kinda thrown together with complete strangers but have something that connects you in a really deep way!! I used to be such a strong positive person and I'm struggling. Determined to get most of that back just going to take time xx chat anytime xx love n hugs T xx

It is a shock but knowing is always better to help you deal with what's going on. This site is great for people's questions as you find similar symptoms and won't feel so all alone. Finding the PBC foundation was a huge relief. They are great and give you information and people's stories with specialist advice too. I have Aih/pbc too and as much as it was an "oh no" moment. It was a huge relief to know what had been going on. I was misdiagnosed for years. Hope

information gives you the support you need.

Lagathavikings in reply to exy21

Thankyou for your kind reply... Much love traci

exy21 in reply to Lagathavikings

Ps coming up for 15yrs diagnosed and azathioprine keeps my levels in check.

Lagathavikings in reply to exy21

Thankyou hun x

Hi , I was in your situation some 16 months ago ....scared , alone and not knowing anything GP was useless but did admit ignorance and referred me to the local hospital ....scans followed and then lockdown .....more panic , more anxiety !!!!! The foundation and the support from my local self help group have eased the way forward ....the people on here are amazing and will help if they can ....keep asking the questions and do be reassured ....xx

Thankyou for your lovely reply xx means so much. Much love traci x

Hi. How are you?? I'm still not well.. Think meds are making me feel awful. Does your body have to get used to them? Xx

Hi there, I started the meds in November and was feeling awful ...I came off them in December and will try again with just one tablet when I feel up to it blood results have come down without taking them .....I believe it is important to let your body get use to Urso but having seen a talk with David Jones ,I am more confident to build up gradually ...he said just one tab a week better than none ....keep positive xx

Thanks for reply xx I'm not on urso I'm on steroids and all sorts. My partner gives me my meds as I'm all over the place at moment. Sickness is awful but on antisickness tabs. Anxiety is a problem too. I usually feel better in evening but I'm just so overwhelmed because of lockdown I kinda feel isolated.. My partner who is fantastic is here but he just feels so helpless x I hope your doing well and you have support xx lots of love x traci x

Sorry hun. I'm getting all confused!!! I am on urso... Think my brain has gone into hibernation. Thank god I have my partner!! He's amazing 😁. So you felt the same on them?? I just feel wierd... Can't really explain it xx. I sympathise with you. I'm going through same. Lots of love and hugs. X

I was disagnosed with both in October 2019. Went to Mayo Clinic in Phoenix, was put on medication and feel amazing. Liver enzymes went from 409 to 14.No symptoms at all. There is life after diagnosis!

Thankyou for reply. So glad your feeling well xx

I have both AIH and PBC and once you have your medication sorted which may take a little while, I am 72 and live a completely normal life still playing racquet sports and swim and walk, if you feel tired the answer is to take plenty of rest, I wish you all the best on your journey and try not to worry, try and stay positive. X

Thankyou so much for your reply.. Means alot xx much appreciated and love x

Hi. Can I ask you if you take part in the 4pm Facebook connection on Fridays is it? Spoke to Robert and he suggested it x thanks x

No sorry I have never done that, hope you are feeling a bit more reassured, take care this is a very caring group Occasionally I still get nauseous I think the tablets take a while to work as your body gets used to them hopefully sickness will disappear,if not speak to your GP or consultant X

Thankyou xxx

Hi hun. Can I ask you something.. My biggest problem is the feeling sick. I'm on a sickness tablet but they don't always work well. Have u any suggestions on the sickness side?? Hopefully you don't get the sickness but if you do any tips? Xx love traci x

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