Hi everybody.
Feel a bit of a mona at the moment just carnt seem to cure things easy . My itch has been controlled with Riferden but I'm struggling with pain in my muscles. Chronic and I live in a 3 tier house.
Anybody else the same. I had aches and pains years ago when I was first diagnosed but it's making me I'll
Sorry x
Hi
It’s not moaning ,it’s reaching out. Unfortunately the muscle and joint pain is another part of PBC. It comes with so many symptoms, there are people who are lucky and don’t get any and then there are people like us that seem to have them all. I use Hot water bottles most of time to help ease some of the pain . Take care xx
The trouble is I had joint pains when I was first diagnosed and it's only just come back.You think you have got over the pains and then you get more symptoms
Hi Janine, I was originally diagnosed with PBC nearly 5 years ago but after many tests, it was decided I had a fatty liver which caused general lethargy, plus aches, for which I was prescribed a high daily dosage of vitamin D tablets. These changed my life for the better. My head and neck do itch greatly; not seen liver consultant to discuss as appointments cancelled, due to Covid. I would be disinclined to take any meds for the itching, as I believe (in my experience) that the itching has come about, due to excessive meds I take for diabetes, BP and cholesterol. Itching could be due to a food intolerance but I don't have proof.
Those aches & pains can be so hard. I experience this also & can go weeks where I am fine then the pain begins. I, too, take a high dose of vitamin D which has helped & I try to walk everyday, although, some days my hips hurt too much. I found doing some small weights & stretching exercises have helped a bit. Take care.
Thankyou. For your reply. I'm not good with with exercise but have a very active life with work and looking after family members
Work & caring for family is a busy life & can be as active as taking a walk for sure. I sure find PBC has so many layers that come & go. Take care.
It great to have a moan as sometimes we don't want to bother family and friends ....good days ,bad days but positive thoughts along the way ...My moan today is having been on urso for just over 3 weeks and really poorly at the weekend ......my son took me to out of hours doc who said stop urso and contact consultant ....not easy in covid times , never met him and will take forever to get a message through !!!! I'm moaning because I feel I can't take urso and I will be doomed .....!!!? so let's moan together Janine and hopefully tomorrow will be brighter with a hint of optimism .....take care and moan away xx
I think urso takes time to get used to. I came off it for a while but was advised to go back k on it.Are you in the uk and what hospital are you with.
I can honestly say my consultant is fantastic. And will ring me if I request.
I was with huddersfield but transferred to leeds
Hi Janine. sounds like you have a good consultant ..I'm in Nottingham, only spoken on the phone once and find it difficult to get a message through ...I'm waiting for a response and still trying to figure out this condition. the meds and the side effects ...take care and thanks for reply xx
I'm under st james . He is very good. And I have a nurses email too.When was you diagnosed and have you got pbc
Was diagnosed pbc in October 2019 after positive AMA ...didn't start urso till November 2020 ....got most of my info from the foundation and the lovely people on here ......The urso has driven me nuts , dry eyes , sore face, nausea and generally not functioning very well ....hoping to get some answers soon xx
Aww I'm sure you will. Dont be afraid to pester your consultant.I expect it's even harder with covid.
But you have a right to speak to someone
Take care x
PBC 
Pbc
PBC 
