OT:didn't get emailed the original: So confused.

[Guest guest]

I normally get emailed all of the post and I noticed that Marie's reply to " so confused " but did not remember receiving the original so I looked for it. It showed as posted at the website but doesn't show in my emails. I don't know if this is a problem with my email (I'm not aware of it happening before) or if its a possible problem originating from Yahoo. Reporting the problem anyway.

Ian (52) PSC 89

Hi Shahina,Do you see a hepatologist as well as a GI doc? If not, you probably should. Ask the GI doctor for a referral, or politely insist on the referral. I would ask the hepatologist if you should stop the Urso, or lower the dose. I think most of us will wait to talk to our hepatologist before we change our Urso medication.

As to the Crohn's being gone . . . that sounds very odd to me. You probably already know that most people with PSC have ulcerative colitis (or sometimes Crohn's). Quite a few people are diagnosed with Crohn's or UC AFTER they've been diagnosed with PSC, although most are diagnosed first with Crohn's or UC, and then with PSC. Crohn's & UC are autoimmune diseases. The bad news is that once you have an autoimmune disease, you pretty much always have it, although it can go into remission, and usually does. It can often be difficult to tell the difference between Crohn's & UC, so sometimes the doctor will change the diagnosis from one disease to another. There is a blood test available now from Promethius labs in San Diego, CA that will give a clue as to which disease you have. Unfortunately you almost certainly have either Crohn's or UC. Some people have both Crohn's & UC.

I had a GI doctor for about 22 years, including during a bout with a toxic megacolon, who said to me after 22 years that he didn't think I had UC, even though he had been treating me for it, and I was on azulfidine (precursor to asacol). I KNEW I had UC, and I though he was nuts - I honestly couldn't believe he said that. He did the blood test on me and sure enough it came back showing UC. I had had minor flares since the toxic megacolon which I guess the doctor had forgotten about. Maybe he forgot about the toxic megacolon??? Hard to believe. Anyway, I changed GI doctors and was very glad I did. That GI doctor also thought I couldn't have PSC because it was so rare.

Anyway, if you're on asacol, I would definitely stay on it until you get a determination on the IBD (inflammatory bowel disease - either Crohn's or UC) you have, if any (and as I said, I think you have an IBD). When you have an IBD, it needs to be treated even if you are in remission. The medicines KEEP you in remission, and hopefully keep the flare ups from being really bad (such as turning into a toxic megacolon, which can kill you). If your doctor doesn't understand this, then get another doctor.

I wish you the best of luck, and keep us posted as to how you are doing.

Marie

To: From: shahinap1979@...

Date: Thu, 3 Jul 2008 17:50:14 +0000Subject: So confused.

Hi everyone,I am a lurker. What the heck is this URSO thing going on? I take 8 tablets a day (250mg) and now I do not need to continue it? I have had PSC for 5 years and my MRIs show continuous progression despite being on URSO.

I get a lot of inflammation in my liver leading to low grade fevers and terrible pain which can't be treated with antibiotics b/c it isn't an actual cholangitis attack. I had secret hopes for URSO.

AAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!! AND to top it off I was diagnosed with Crohns 4 YEARS after my diagnosis of PSC (was hospitalized with a cholangitis attack which is when I was diagnosed)and recently had a colonoscopy (in May) and now

my doctor says I don't have Crohns anymore yet 4 months ago i had uclerative lesions throughout my bowel. And get this..he tells me to keep taking Asacol even though he is not sure I need it?Why am I taking all this medicine that doesn't actually work? I have

great benefits so 90% of perscriptions are paid for. So I need to pay approx. 50 bucks a month for my Asacol and Urso which is better then full price but should I just be saving this 50 bucks a month?Thanks for listening.

ShahinaTorontodx PSC 2003

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