PBC & Ileitus

[hmcd62]

Does anyone else suffer from both? If so how are you affected & what treatment are you having?

[GillianB]

I have suffered from Crohns or Ileocolitis for years and last year PBC which is treated with Mesalazine an anti-inflammatory drug used to treat inflammatory bowel disease. I am not on urso as my liver enzimes are normal. Both are linked in my case with a dodgy gene.

[Junolee]

I had to google Ileitus. I do know that Crohn's disease can be common with PBC as can many autoimmune diseases. I am sure there are a few on here that can help

you. It does seem us PBCers can be hit with a few things hope you get to chat with someone who is similar to you.

[jimshe in reply to Junolee]

I have pbc overlap with autoimmune hepatitis a little different to others I know I am on urso at minute seems to be helping just waiting to see if I need steroids too . It seems as everyone has different things to cope with I have had mine 15 years before being diagnosed I have dreaded itch tired fatigue but hardly sleep and catch everything that's going due to immune system but everyone not the same

[Junolee in reply to jimshe]

Hi jimshe, yes me too. I have AIH also. When first diagnosed In 2012 I had jaundice. Was on steroids for 18 months. Then I was put on imuran. That together with Urso has got me back to near enough to normal. Feel well and all scans look good, no dis improvement since. I also have osteoporosis which I am attending bone clinic for and meds. Now they have discovered endometriosis, for which I've had a laparoscopy this week. All go lol. Well looked after I can tell you.

[jimshe in reply to Junolee]

What would we do without nhs lol I have arthritis in all my joints so know how you feel . Sometimes not good but just now ok glad your feeling quite well too. Hope all goes well for you with everything else we all need to take care of ourselves you take care and good luck x

[cuttysark]

Hi,

I also have normal Lfts and normal liver ultrasound. I have Sjogrens autoimmune disease but normal blood tests. Thirty percent of people with Sjogrens are seronegative and it can go along with PBC.

I do have persistent biliary pain though and for a couple of years the Ursofalk helped dramatically with it but now I am on low dose steroids and also a steroid injection every three months which helps a lot.

I suffered for decades before being diagnosed, evrything put down to IBS because of the negative bloods. But they have at last worked it out and said to me last week that if you have one autoimmne condition it can affect many othe systems in your body. X