Hallo hope you all alright
So a week in from finding out I have PBC , days have been up and down , very low as I struggle with mental health
I’m reading so many things that really make me afraid , hair will fall out , teeth will fall out , the list goes on
I just don’t no what I should eat any more
How long do the meds start to show side effects
Would love to get some advice
Thank you carol
Hi carol, sorry to hear you’re struggling at the moment. If you haven’t already, it might be worth having a chat with your GP about how your feeling and trying to get your head round PBC. Try not to take too much notice of what your reading as that in itself can cause anxiety. When I get new medication I don’t read the leaflet anymore as the side effects can be more worrying than the actual illness! As for food, eat what ever you fancy within reason, similar to being on a diet.
The only thing I’ve stopped is alcohol, although I know others who still have a glass or two with no problems. 🌹
Thank you so much just feel so alone and don’t no how to take this , hope you ok
I’m ‘as well as can be expected’ funny old term that 🙂 I just get on with what the day brings, no day is the same as the next. Good days full of energy and can go for walks or gardening and rubbish days, reading or jigsaw puzzles with naps during the day. It did take a while to listen and except what my body was telling me. I was diagnosed with lupus and sojgrens before PBC and had to understand what they were before I got hit with raynaulds and PBC. If you stay on the forum you certainly aren’t alone as many on here will relate to what your going through, your diagnosis is still quite new and it does take a little while to come to terms with but hang on in, you’ll get there. 🙂
When newly diagnosed pbc can be daunting it depends on what your gp said even a consultant!! As a pbc friend of nearly 19 years from diagnosis please please email the pbc foundation it is where you will find accurate and up-to-date information it is an amazing pbc family a charity set up by the founder Collette 25 years ago when there wasn't even any medication!I prom you you will never feel alone again if you email and become a member which is free too!!!
Pbcfoundation.org.uk
Once a member you can access so much information and on every other Thursday at 2pm can even ask questions to a top consultant .so please email th foundation and then relax x
If you’ve not done so already click on the link to the PBC foundation. They will have and will send you all the information you need about PBC. Please don’t scare yourself by using google.
Give them a call on their helpline and tell them how you feel, I promise , you won’t regret it.
When I was diagnosed 12 years ago, at 55 I sat in the consultants room ,who said you have PBC. I asked what it was and he began writing something on a piece of paper, he pushed the paper over the desk to me, and said look them up.
( he never explained a thing to me, as I started to leave the room, I said it sounds like you’ve given me a death sentence. He muttered you’ll die one day but, with PBC, not from It)
For a couple of years I never wanted to know anything , thinking that was the best way for me as I did suffer a lot of anxiety. How wrong was I, knowledge gives you the power to advocate for your health which in turn helped the Anxiety.
Try not to worry too much. It takes a while to accept something new like PBC. Join the PBC Foundation and know you are not alone. People on this site will offer good support and understanding. You should try to eat well avoiding too much fat and sugar. I don't drink much alcohol but have the occasional small glass of wine to be sociable. PBC is known as a glacial condition because it normally moves slowly like a glacier. There are many much worse diagnoses. You'll be fine 😊
What do you think about this?
New and confused about what to do
What to do
im scared and dont know what to do
Which bloods do I ask for?
