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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Update on my PSC numbers, 7 years after diagnosis

I see it has been a long time since I last posted. To start with, I’m still alive :smile:

I’m also back in the US after four years living and working in Korea. So I guess it’s time to update my status and the current state of my PSC (with my having first been diagnosed in 2012).

2019 Liver Function Test

Total Protein: 7.7 (Normal Range)
Albumin: 4.2 (Normal Range)
Globulin: 3.5 (Normal)
A/G Ratio: 1.20 (Normal)
AST: 64 (High but was 80 in 2018 and 63 in 2016)
ALT: 63 (High but 67 in 2018)
ALK-Phosphate: 558 (very High but was 591 in 2018)
GTP: 738 :worried: This worries me the most as it was 538 in 2018, 591 in 2017 and 511 in 2016
T-Bilirubin is normal at 0.69 and D-Bilirubin normal at 0.47. ID- Bilirubin is a tad low at 0.22

Symptoms: After not having much in the way of itching, it’s back with a vengeance! I’d blame it on the dog or cat if I had one :stuck_out_tongue_winking_eye:

Aversion to cold weather has gotten worse. Seems I get cold even at 70 F if the wind is blowing.

Occasionally I’ll get what I used to call the “colitis” sickness (not sure if it’s the UC or PSC), where I’ll get very cold, bones and muscles aching, before breaking into a fever and sweating everything out.

Fatigue is still there, which I think I feel more now as my job has me traveling internationally about 40% of my time.

I’m still taking three 300 mg Ursodiol tablets daily, as well as 4 Asacol tablets (400 mg) daily for the UC. I have several tests scheduled for this summer on my liver, as with every switch to a new doctor, they want to baseline me.

Good news? Ulcerative Colitis is pretty much gone. Last 5 or so colonoscopies show no sign of it, zero on a scale of 1-10.

Stephen

2 Likes

Stephen,
I can tell you have a good sense of humor. That generally is a sign of how one views life. I was diagnosed with UC years before I was diagnosed with PSC. Cold chills, diarrhea cramps and all the other assorted symptoms of UC have been in remission for years. I don’t take any maintenance drug, but I do have an annual colonoscopy. I know liver function test numbers are important, but I try not to dwell on them. (I’m post-transplant, but get tested once a month. Trust me, you still pay attention to those numbers). Keep you life as normal as possible. Enjoy being stateside and . . . thank you, Marine for your service to our country.

Welcome back (and back to the US), Stephen. So glad your UC has behaved so well. Of all the tests on the LFT’s, the only one that my doc focused on was the bilirubin. I am not sure if that was just him, or if other docs put a higher emphasis on other numbers.

International travel with our kind of fatigue would intimidate the @%#% out of me, so I hope you do everything you can do to help, to avoid jet lag…

PSCers can run the risk of anemia, and that showed in my bloodwork. Two years ago, I was talking with a coworker in our parking lot after work and froze. I thought the temp was in the 30’s, yet while driving home, the car temp showed 55 degrees. And I had on a long sleeve shirt.

Jeff,
My doctor virtually disregards my LFT’s other than bilirubin also. My alk phos is almost always between 400-575 with elevated ALT & AST <100, but my bilirubin will stay between .9 and 1.0. She has shown no signs of concern. I’m not thrilled with this but she is on top of my annual MRCP and 6 month bloodwork. So far so good.

Russ

Edit: also have low iron. Taking supp’s for it.

Thanks Paul! I try not to dwell on what “might” happen, I mean I could get hit by a Russian Satellite falling out of the sky :stuck_out_tongue_winking_eye:

I’m still doing the annual colonoscopy, and have had good results for years. Almost as if I’m done with that chapter of my life. Now hoping I can hammer this PSC thing as well :smile:

Thanks Jeff. Yes, the fatigue kicks my ass at times, as my new role in the US consists of about 40% travel to Australia and Europe. I’ll just keep pushing on though until I can’t do it anymore :smile:

I’m not sure what numbers to really follow. Doctors don’t seem to be too concerned with where I stand now, so that’s a good sign.

Seeing I was diagnosed seven years ago is both comforting and worrisome, as most of the literature I read on PSC quotes a survival rate of 10-15 years, but I’ve always bucked the odds :smile: