Quality of Life

[jannybean]

Hello Everyone, I joined this site In April this year and have been reading your posts. Got diagnosed with PBC in April this year, I've been having abnormal LFT's since 2009 and my doctor finally sent me to see a specialist. I had a biopsy in January this year. When I got my results in April the specialist wrote it down for me on a piece of paper and told me to look it up on the internet and for my family to do the same. He said there was no cure and that a follow up appointment would be made. I have all the symptoms of PBC, itch, pain in right side, nausea, dry eyes, dry mouth, weak hands and wrist, muscle pain etc.... I had a follow up last week and I saw a nurse who told me a bit about PBC, and that I would be referred to a dietician, I would also need a endoscopy to check for esophageal varices. and that from now on would be seen every 3 months to monitor my condition. On Friday I visited my own doctor as I have been suffering with the itch and the pain in my side. He was going to prescribe some sleeping tablets to help me sleep but then changed his mind, he also said (after examination) I had costochondritis and that I needed anti inflammatory's but due to him not knowing enough about PBC he didn't want to prescribe those either.

Today I rang the hospital and spoke to the specialists secretary, I told her I had no quality of life and felt like topping myself, she said she would speak to the specialist. The specialist rang me not long after and told me he was going to start me on urso and that he would bring my appointment forward. He also said he would write to my GP and explain a little about PBC and the meds I was able to take, unfortunately due to a backlog in correspondence at the hospital this could take up to 5 weeks.

[nursenicky13]

Have you joined the PBC foundation & had the leaflet they produce that is specifically for GP's?

[Hidden in reply to nursenicky13]

Sometimes I think we would get more help from a vet, I know I would.

[Goks]

Looks like your consultant is on the ball and is going to look after you. Don't worry it might sound bad and after looking up the condition on the internet it seems worse than what it is. Join one of the PBC groups. There is a list of the groups in the PBC booklet which is sent out quarterly.

[Junolee]

Hi. I am in work so don't have time to do proper reply but PLEASE believe me everything will be ok. I was diagnosed in May 2012 and I feel wonderful. Look up my posts and I'll try and hook again later.

[jannybean]

Oh Ladies thank you so much, I have just joined the PBC Foundation so should get some information soon.

You lit the light at the end of my tunnel, thanks again

[littlemo in reply to jannybean]

Hi there do not worry you are not alone. At the start everyone feels this way but once you get your head around the diagnosis and start treatment you will feel better trust me. Whilst you are waiting on seeing the consultant the GP can liase with the consultant and prescribe the meds you need. Questran Light is good for the itch, if and when its prescribed for you take a sachet before and one after breakfast I find this keeps the itch at mild tolearable levels during the day at least. The night time always seems to be worse for us that have the itch. Again I take one or two sachets of Questran during the nights if the itch is very bad. Fear not though there is life after PBC. If you click on my icon you can read my expereiences in living with it for the past 11yrs since diagnosis and in one of the posts I have mentioned things I feel have helped and things that have found have hindered the itch over the yrs. Bfn take care.