Diagnosed with PBC

[lorilee58]

Well, I saw the doctor today and I have been officially diagnosed with PBC. Mentally I feel better,at least I know it is not in my head after months of going from doctor to doctor. I will start the ursodiol forte 500 mg and go form there. Now to learn how to cope with the fatigue, that is the toughest. Any suggestions?

[kimphoebe]

Welcome to our group but sorry about your dx. As for the fatigue just don't fight it. Rest when u can. Iv learned the hard way

[lorilee58 in reply to kimphoebe]

Thank you, I know this sounds strange but I received the run around for months, many doctor's appointments and no answers. In short I am thankful for the answer finally and I know what I am facing. I will keep smiling!! Thank you for the answer to my question. Lori

[EileenUSA in reply to lorilee58]

I hear you on the fatigue.. Before my dx 2 years ago, I kept telling my Dr. I had these crushing fatigue episodes. She kept running blood labs and other things would pop up-- like thyroid meds needing adjustment (mine was removed due to benign growth) and B-12 deficiency...

Eventually, my LFTs started escalating-- alk phos etc.. I was sent to hepatoligst and then AMA test and biopsy and Dx.

So like you-- I felt "relieved" to at least have a name/reason for fatigue. It is hard to adjust for me when I have to accept limits and then- after a down time -- I over do it - trying to make up for when I was down... still working on balance. 😬

I'm a work in progress.. trying to stay positive and learn to work with what I have!

[cazer]

do abit rest a bit. don't try and run on empty... eating smaller meals and a healthy snack in between... this helps energy levels.

also if I had a heavy day or a big event coming up.. i would have a quiet day or so before and after. if you are going out in the evening perhaps try having a sit down earlier on.

in the beginning I fought my fatigue and kept ending up in bed... after that i learnt to work with it rather than fight. its a part of me... so accepting it is easier.

some people find exercise helps... i didn't but everyone is different.

basically pace yourself and life will be easier.

join pbc foundation and get their pbc compendium and that is full of useful info.

i felt relief once I had the diagnosis.. like you... there are a lot of worse things to have.

good luck with it. cazer

[EileenUSA]

pbcfoundation.org.uk

Hi,

Yes, learning to listen to body and adjust as needed etc...

AND, for newly dx' folks--

A good way to get the most current and sound medical info on PBC research, treatment and management is to join the PBC foundation- I posted link above. Join the foundation ASAP. ( it's a separate membership from this peer support group- it took me awhile to figure that out when I first found this online support forum)

You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.

Once you join the Foundation- log in and you will have online access to the latest "Bear Facts newsletter". Print it out - its got an 8 page insert with Questions to ask your doctor and facts about PBC symptoms, treatment etc. Very helpful.

Hope this helps.

[LindyRich in reply to EileenUSA]

Don't forget the new app

[Destiny13 in reply to LindyRich]

What is the app called please and can you get it for android?

[Sachin1234]

Exercise and lots of green veggies with lean meat !

Welcome to pbc!🙏