I went to the doctor a few weeks ago and he believes that I have Small Duct PSC. It only effects 10-15% of PSC sufferers. I am somewhat skeptical of this diagnosis given that I have a 10 year hisory of liver disease and have been diagnosed with a disease they [the doctors] talk themselves out of it. Has anyone been diagnosed with Small Duct PSC? Any more information you could provide would also be very helpful.
PSC and PBC have been batted around, but I am hoping that although PSC is scary that it is in fact my diagnosis.
I have small duct PSC. I have probably had it for many years. A blood test picked it up 3 yrs ago. Symptoms have started in the past year. One good thing about this diagnosis is that it usually progresses very slowly. Ursodiol is often used with some success in this type of PSC. I’m going to the Mayo Clinic tomorrow to see what they think. I will let you know if I learn anything else.
Thank you for your support and I wish you the best as well! I went to Mayo many years ago and they gave me a diagnosis that was later disproven–right at this moment it is small duct PSC (we’ll see how long this diagnosis lasts)… See, I have many health issues and the doctors never suspect that I could have something atypical. I have mild Cerebral Palsy, the PSC, hearing loss/tinnitus (right-sided), UC, and now severe Cushings Syndrome due to the budesonide I was given for the UC.
I’m sorry to hear about all of those health issues that you have, Bichonmom. That makes my health issues seem pretty benign!
Regarding the itching, I have had good relief from cholestyramine, which also helps my diarrhea and high cholesterol. Hydroxyzine and Ambien at night help me sleep without itching keeping me awake.
I hope this is helpful to someone out there in PSC land.
Please stay healthy,
Any tricks on getting the cholestyramine down without retching? Aak. Consistency of coursely ground drywall mixed with liquid, but even drywall dissolves better. Tried it through thick straw at back of throat but it still left a gritty trail.
I didn't find hydroxyzine very helpful (maybe 1 hour of slightly reduced itch) when the pruritis was in full throttle, head to toe horrific snapping itch pinging around every inch of body. Worse at night than during the day of course, bed sheet creating unwanted heat..
Cholestyramine is more palatable for me in a fruit smoothie. I usually use about 5oz of coconut milk (available in 1/2 gal. cartons at most grocery stores), a half a bannana, a few strawberries, and some ice blended with the cholestyramine. A little coconut oil added gives the sensation of some chunks of coconut in the smoothie. This oil has medium chain triglycerides, which are helpful in stopping my weight loss.
Wishes for many good days to all!
Fruit smoothy is a very good idea. Somehow though I think it'll still want to head north while swallowing. Even Tums has my gag reflex in overdrive. Don't even get me started on pre-procedure bowel preps...
I have it as well. Diagnosed October 2011 via biopsy. any other means of diagnosis failed, which seems to be normal for small duct PSC. If a biopsy picks a "good" spot, diagnosis is straight, otherwisw there is always som guessing ...
I take URSOFALK (a German brand of UDCA), and it helps. Some symptoms disappeared and others turned better. From all our reading so far I must conclude one thing: Thank God it's only small duct PSC! of all those terrible liver diseases we seem to have caught the nicest.