Possible PSC; problems with med changes

I've been told I might have primary sclerosing cholangitis (PSC) and will need further work up, imaging I'm sure.

Over the last three months I have suffered with constant belching, then some nausea and vomiting. My MD told me to try OTC remedies such as Zantac which helped with the gas but did nothing to lessen the occasional nausea. Then a rather benign rash that I've had for some time began welting and itching awfully. I was experiencing the most severe fatigue ever, often had to go back to bed after eating, sometimes sleeping 12-14 hours per day.

I go to the MD, I know something is going on...she does some blood work and my LFTs were 5 times upper limit of normal. My GGT was 1800 (upper limit is 45). She suspected PSC but I wondered if it was a reaction to Lovastatin which she had recently prescribed. She agreed to retest in 2 weeks, without the Lovastatin. She brushed off my rash as body ringworm and prescribed an anti-fungal cream which did nothing but make the itching worse. In two weeks my LFTs normalized somewhat: down to 118/89 ALT/AST. GGT from 1800 to 900. Bilirubin and ALP normal on both tests. Also negative for Hep screen. I will see her on Tues to see what she thinks.

This is pretty frightening, I've read all of Quincy's posts and will take her advice not to have invasive tests done unless and until MRCP or ultrasound indicates problems.

To make matters worse, my insurance changed and I was forced to switch UC meds from Lialda to Asacol 2.4 grams. Within a few days my "remission" ended. I had tons of mucous, some liquid diarrhea and then a little blood and increased frequency and urgency. I started doing nightly Mesalamine enemas. It's been a week now and no change.

My MD is a "hands off" kind of Doctor and PSC is complex and difficult to diagnose. I wonder if I should give a heads up to my GI (who is also a Hepatologist) or suggest my doctor consult with my GI? Anyone with any advice or ideas about the change from Lialda to Asacol?

Do you still have the other symptoms? Since the blood tests improved after you stopped that medication that seems to confirm that the high LFTs were an adverse reaction to the med. If your Dr based her thought about possible PSC because of the test results it seems strange that the levels would be getting better.

Maybe your dr can appeal to the insurance company to try and get you approved for Lialda. I've heard of appeals working sometimes. Asacol dissolves at a slightly higher pH level than Lialda so that could be why it's not working as well for you. I am worried about the same thing (only in reverse -- I am on Acacol HD but new insurance covers Lialda not Asacol) I had stocked up on Asacol so I have enough for several months. Not sure what I am going to do after that.

When I dropped the statin I had the PSC symptoms of rash/itching huge fatigue and constant belching. Though my liver numbers came down (but still very high) after I dropped the statin, I still itch and have upper gas but the fatigue is improved.

I was on Lialda and in "remission" from UC until I switched to Asacol 2 weeks ago. I started flare symptoms within 3 days of switching to Asacol. Yes I will contact my GI and ask for an exception so I can go back to Lialda, but I worry that perhaps the flare is related to possible PSC? I need to get a definitive diagnosis.

Yes stud it bugs me too, I mean she just dismissed it. Yet she was the one to suggest possible PSC and if she knew anything about PSC she would know that people infrequently present with an itchy rash.

Yes ks I agree about the "hands off". Might be fine for a healthy young adult with no symptoms, but an older lady with a possible autoimmune issue shouldn't have to whine for 3 months about gas and then be told to take an over the counter med. We'll see what she says tomorrow meanwhile I will work on the Lialda issue. SO SORRY TO SEE BLOOD AGAIN.

I don't think at all it's the 5ASA.

Can you get on rectal meds soon since you're flaring?

Definitely ask for an MRCP or at the very least an ultrasound then an MRCP. No fishing expedition until something has suggested you need one.

I just saw my hepatologist (finally got the appointment), And from the last MRCP, no change since 10 years ago and 3 MRCPs...I don't have PSC. But it's almost 95% sure I have Primary Biliary Cirrhosis.

If she suspects it, she should put you on URSOdiol and see if your enzymes go down.

You were on statin for high cholesterol? It is common for cholesterol to be higher with liver disease. but definitely you need to have imaging first.

The itching could be common with an autoimmune reaction rather than backed up bilirubin.

Are you yellow? whites of eyes yellow?

Don't drink alcohol.

Have your doc do an AMA test to see if it's positive or negative. Mine has always been positive and leaning more towards PBC for the 10 years anyway.

q

Hi..any news regarding your appointment with your doc?

Did you end up getting an appointment for ultrasound and an ERCP?

PBC is still a destructive liver disease, but since I do react well to the URSO, I'll assume that it'll be one that will be continued after this "test" of being off for 3 months.

Please ask the doc to do an AMA test as well.

Keep us updated,
q