When my son’s bloods were first taken about 5 months ago, they came back mildly elevated with regard to liver enzymes. They were taken again about 2 weeks later and were improving. Then, post first day procedure (a colonoscopy), they shot up, then post second day procedure (EUS), they sky-rocketed and he was very ill, so deathly pale, so completely unable to get out of bed. He was eventually diagnosed with small duct PSC stage 2. Over the next month or two, each day he improved slightly and with his own determination to get up and exercise as he could tolerate, he now looks and feels normal and his liver enzymes are returning to normal without Urso. Is this a normal kind of experience. I’m scared to have further monitoring because of the effect of the anaesthetic on his liver enzymes. Thanks
Melanie,
I’m sorry your son had to experience this. Did the doctors specifically state it was the anesthesia? What type did they use? I know for me I had a lot of difficulty with the MAC anesthesia during procedures, so from then on out they always put me under general anesthesia and I had no further problems in that regard. If his liver enzymes continue to go back up, I would certainly consider putting him on URSO. No, it doesn’t cure PSC by any means, but it gives him a quality of life that is so important to PSC patients. I’m glad to hear he is exercising, that is very important with this disease. Since neither of the procedures he had done were considered highly invasive, it does sound like he had a reaction to the anesthesia. I do hope you have him under the direct care of a transplant hepatologist. Do not take chances with ordinary GI doctors for this disease. Keep in touch and let us know how he progresses. You have our support at this time.
We’re getting a second opinion on his whole condition so we’re waiting on that. Initially the second opinion doctor said that no way, the anaesthetic wouldn’t do that (dismiss dismiss!!) but then he has changed his mind as it is very clearly associated with each anaesthetic.
His liver enzymes are returning to within normal range without Urso at the moment and he is actually really well now after being so very very sick after each anaesthetic. We will review the Urso when we have the appointment with the second GI.
But I wholeheartedly agree, the GIs seem to be completely lost and don’t seem to have any idea what’s going on with the liver. We are going to see the liver specialist at the local major hospital and he is ‘the’ transplant guy so we’ll be in good hands. A transplant is hopefully a long way off but I’ll be happy once we have seen him.
I guess I just wanted to know if anyone else has experienced this change in liver enzymes with general anaesthetic and so far I haven’t found anyone who has. I know this disease is unpredictable but I would have thought someone would have had a similar experience somewhere. But you’re probably correct, it may well have been an allergic reaction and not something to do with PSC.
Interesting, are they trending downwards again? This doesn’t seem to be a common thing and frankly our doctor just looks puzzled when I’ve mentioned it. Makes me nervous about future monitoring for my son but it’s early days.
My increases were only just noticed on the January 24th labs, so not sure if they are trending down yet. I’ll have to get more bloodwork next month, so I will try to check back once I have them.
For all I know, though, it could just be coincidence. It did give me reason for pause after reading yours and Mark’s comments.
It could be coincidence but in relation to my son’s bloods the peaks so clearly correlate with each procedure. He had marked symptoms with each as well and neither procedure was invasive so anaesthesia would be the likely explanation. Anyway, I guess I was just wondering if this were a normal sort of thing in PSC or not and it appears not. I would be keen to know how you go in the future and if it is an ongoing pattern.
Sure. I will be sure to post if the issue recurs. Thankfully, they did not find signs of UC or IBS, so the doctor performing the procedure said I may not need to get one every year in absence of these specific conditions. Have to confirm this with my hepatologist, though.
We originally thought I had small duct because I was showing symptoms of PSC with nothing showing up on the MRCP, but on the last one they found what they believe are strictures. I have another MRCP on Monday, one year from the last one where they found something, so we shall see what they find this time.
He was diagnosed by liver biopsy. Had an edoscopic ultrasound which was normal apart from some mildly dilated ducts and the MRI which again showed mild dilatation but nothing else. Finally a liver biopsy. He is due for another MRI, I think our specialist is anticipating that there may be changes in the large ducts in time, because of the dilatation that was present.
He’s so well now, I’m hoping that this means it isn’t progressing to the large ducts and his liver enzymes are travelling down steadily with only GGT elevated but still going down each month. I don’t know if this means anything, it’s hard to tell with PSC.
I hope that you get good news from your test results.