Sandra

[2783]

Hi, my husband has been diagnosed with primary bilary cirrhosis in March, doctors have been great but we seam to be left to get on with it best we can.

[cazz22]

Hello-yes unfortunately specialist/doctors(unless you are very fortunate) tend to do that.im afraid I've learnt more from the Pbc foundation(you MUST contact them-address is above in edinborough) and from people on here.take a few weeks to let it all sink in learn as much about the dratted disease as you can then push it to the back of your minds and enjoy your lives.there are worse things to have.its NOT a death sentence-welcome to the club and sing out loud.the more voices we can raise that have this the quicker they will find a cure-and I really believe they will.take care.

[Hidden]

Hello 2783.

I started itching at aged 45 back in early 2010. By Dec 2010 I was diagnosed with PBC and I was by then 46.

I have found from my experience that it seems we are left to get on with it but I think possibly due to maybe because one could be at a possible early stage of PBC. (Primary Biliary Cirrhosis was changed to Primary Biliary Cholangitis a few months ago. Changes will be seen of the new name. I won't comment on the new name.)

There is the PBC Foundation site and you can make yourself a member and receive their newsletter Bear Facts (once a member you can see back issues on the site). There is also another good site Liver North where you can request free a dvd on PBC to be sent to you. I got one 3yrs ago now. I'll pop the link on at the end of my posting.

I presume your husband has started on urso now and has a follow-up appointment in the very near future to check how the bloods are on this medication. I started urso Dec 2010 and went back to hospital for jy first appointment early Feb 2011 for my first set of bloods on urso. I then went back to hospital 6 months later. In the interim period between I got a blood envelope at hospital for the bloods to be done at the GP surgery so the consultant had them on my return.

I've not actually had much in the way of any changes or new symptons in all this time. My bloods are not normal as they are not expected to be with PBC now but I am apparently on an even keel. At present I just see my GP annually now and have the bloods 6mths and the GP takes it from there really.

I thought I had a good diet up to diagnosis but I have altered a few things that bit more since. Can't say it has made much of a difference though a good diet can make you feel that bit better in yourself.

For me it took several months to start to accept that I was expected to take urso for lilfe now and then it took that bit longer to convince myself the PBC just wouldn't be going away. It couild slow right down and just chug along without much difference for years even never change. So I just decided to get on with life the best way I could, not dwell on things that could occur with PBC and deal with anything as it came along. To me no use worrrying needlessly about something that could just never be.

livernorth.org.uk/

[2783 in reply to Hidden]

Thanks go mesg, husband also 46 never been ill before not even colds. Has check ups every 2 weeks at hospital and doctors, bloods going back up again. He is on tablets 250g 3 tablets and powders. He says he feels ok. We have 3 kids and need to buy bigger house but are in limbo now, sandra

[PBCFoundation PBC Foundation]

Hello Sandra,

I have sent you a direct message.

Regards

PBC Foundation