PBC fatigue help

[Bevmc]

I have been diagnosed with PBC, I have been told that the medication won't help the fatigue. I wondered if anyone had any advice or know of anything that helps.

Thanks

[Jen11804]

Hi bevmc

Sorry to hear about your fatigue. My understanding is that no medication will help with fatigue. You have go rest when you can and only do what you can. It's hard especially if you work or have small children to look after. Did you get your thyroid checked ? Sometimes that contributes to fatigue. I used to be very tired but I find exercising really helps with it. I don't have late nights although I do have early mornings so by early evenings I'm pretty well done Rest, try exercise and do what you can. I would rather have fatigue I think than itch. Itching is terrible.

Good luck

[Bevmc in reply to Jen11804]

Hi

Thanks for your comment. I manage to get through the day, I get up early and go to bed early and pace myself the itching is worse when I'm tired. It's very early days for me, they are checking everything else before I start meds probably at the end of the month, I was diagnosed yesterday so I feel a bit shell shocked!

Regards

[bestiebabe in reply to Bevmc]

i have had PBC for over 20 years.I coped with the fatigue by sleeping whenever it gets too bad, even a half an hour nap helps. My itching was helped by Urso...it's a longer name that I can't spell...lol. You do learn to deal with it and the meds do help with slowing down the progress of the disease. I had a liver transplant after 19yrs of having PBCand not everyone gets to that stage. I am coming up to a year post transplant and still will be susceptible to PBC. I hope you can come to terms with having this illness and if you need any more advice or tips just message me. Good luck

[Bevmc in reply to bestiebabe]

Hi

Thanks for your reply, how old were you when you were diagnosed?

I'm 49, I'm still having tests and should begin treatment at the end of the month. I'm wondering how long it takes initially to settle down and what, if any the side effects are.

Regards

[bestiebabe]

Hi, I was 39 when they told me, it was an auto immune disease.No one seemed to know much about PBC until I was told about PBC Foundation, it's a charity in the UK,not sure where you are. They have loads of information. I was put straight on Ursofalk for the itching. I had a liver biopsy to check on scarring to my liver. They can tell so much from these, they ruled out any alcohol damage and said I was at an early stage.

I coped with it fairly well for 15 years,changed medications a few times till we found one that worked best. I had the itching, sometimes dry eyes and the fatigue. That can be the hardest thing to cope with, but you just have to find what works for you. You can also get what I call brain fog. Like going to put petrol in the car but not remembering what it is called....

Everyone is different but I am sure with help you will be able to find a routine to suit you. Hope that helps and not too much info. Any specific questions feel free to ask. I am sure you will settle into a routine.

[Bevmc in reply to bestiebabe]

Thanks so much, I do have the brain fog but was scared to ask about it in case it was just me or unrelated lol.

I will look up the PBC foundation. My consultant is deciding whether to do a biopsy, I think it depends on the results of my latest bloods & CT scan. Thanks so much for your time, I'm in Dorset. I'll see what's available x

[bestiebabe in reply to Bevmc]

As I say anytime you want to ask anything, feel free I am always happy to help as me and my family didn't really have any one to ask. And sometimes I felt silly asking what I thought were stupid questions to doctors etc.

Corinne x