Re: Recent Diagnosis/How Much Time?

[Guest guest]

Thanks for your response. Diagnosed in 1986, and still doing fine,

that gives me hope. But, I have to ask my GI (believe it or not, I

have 2; the 1st one recommended me to the 2nd one, since the 2nd was

only one of 2 GI's in my area who perform ERCPs, but, then, I've

also been told that it's a fairly common procedure. In any case,

they are both great. As you said, it's so important.)about the

itching. I was only diagnosed less than 2 weeks ago, but recall

itching for years, as well as fatigue, and weird bad reactions to

prescriptions. Any experience with that?

>

> Hi:

>

> As mentioned earlier it's unpredictable.

>

> I got diagnosed with UC and PSC in 1986 (When I was 20).

> I had a subtotal collectomy my with a Illeostomy in 1998

> that cured the UC. (I also have hypothyroidism, Asthma, etc. -

> I'm an autoimmune disease case study..

>

> My Dr's say I'm 'unusual' since I've had PSC for so long

> but MRCP's look fairly normal - Almost like the disease

> was arrested for a while. My blood tests are off, but

> have been off only by a little for maybe the past 8 years.

> (They were way, way off when I got diagnosed).

>

> I've had problems with itching for almost the past year after

> not having any issues (with itching) for many years. I'm trying

> all sorts of stuff for this as the normal regimens (Questran,

Rifampin)

> don't seem to work well enough (Questran used to work great).

> I'm getting a liver biopsy soon (I haven't had one in a while)

since

> my Dr says it's the only way to accuratly determine the

> 'stage' you are in. I'm a little worried about that.

>

> My advice is not to give up. Try to be as healthy as you

> can otherwise and keep a good attitude. Also, get a good, good

> GI. One you can be comfortable with. I had a 'local' Gi that

retired

> last year. I also have been seeing a Dr who specializes in liver

> disorders in Boston for the 21 years (More recently due to the

itching).

>

> Good luck.

>