I am in a much better place than I was when I posted a couple of weeks ago. My son’s hepatologist explained to me that the symptoms I was attributing to the PSC were actually due to his UC, and he is not as advanced as Imhad thought. That was extremely reassuring. Now I got his latest liver panel results and his AST, ALT, and GGT are going down. He is not currently being treated yet. He is only being treated or his UC. I did recently stop his nightly melatonin and reduce his fat and red meat intake. Is it possible that he doesn’t really have PSC? Or are downward fluctuations in liver function tests nothing to get over excited about?
I hope your son does not have PSC! That would be great! Our son has both PSC and UC, and we did find his liver numbers went down when treatment for the UC was working, but not so far down as to reach normal range. Liver numbers definitely went way up anytime he experiences a flare of the UC as well. For us, liver biopsy was most helpful in determining the true status of the liver, as looking at just numbers is not giving the whole picture.
His numbers are actually down now in very close to normal range, as he is on Urso along with all the meds for the UC. The Urso is of course, not going to change the final outcome of needing a new liver, but it is affecting the numbers. For us, we can't stress enough how important frequent monitoring has been, and also asking lots of challenging questions of your doctor.
I had a question for you? Did the melatonin at night help your son have an uninterrupted sleep?
My liver enzymes are all currently normal and I am not on any medication. But I have had two MRCPs confirming beading of my bile ducts. My understanding is that liver enzymes can fluctuate and sometimes normalize in a certain percentage of PSC patients.
3kids: the melatonin used to help my son fall asleep. He was on 1.5 mg for about six years. I am not sure if it helped him sleep through the night. I never really kept track and I just can’t recall what the pattern was. I just know I got scared about giving it to him after the PSC Dx, so I stopped.