Terry,
Please let me be clear that the things Jeff and I have told you are opinions based on our personal experiences. We are not physicians so please don’t bank on any of this although I think we are on track in telling you good information. Just want to put that disclaimer out there.
I don’t agree in what I’ve seen with PSC patients in my years dealing with this that 21.3 is something you should bank on at your stage in life as an adult. Perhaps if you were diagnosed with PSC as a child or teenager maybe, but don’t count on it. I personally am not convinced you have PSC. Dark urine was never a symptom I had associated with PSC. That sounds more like blood in your urine from some sort of infection or such. I think you ought to also consider seeing a urologist to rule that out as well.
If you do have PSC you asked about remission. There is no remission with PSC as it stand now. There are things to improve quality of life but nothing will reverse PSC other than a transplant. Regarding MRCP, yes it is a very accurate form of imaging for the liver and other vital organs. Always make sure they do the imaging with and without contrast (dye) to get the best shots. But having said that, for a true and clear without question diagnosis of PSC, in my opinion again, I believe an ERCP needs to be done. With ERCP the doctor sends a scope down your throat, into your stomach and up into your common bile duct. From there he can go up the left and right hepatic ducts and inspect for blockages. He will also inspect your pancreatic duct while he’s in there. That’s his eyes looking inside your bile ducts and that my friend is a for sure diagnosis when that occurs.
And you are not asking too many questions. I wish I had someone answering mine as quickly as I am yours when I was first diagnosed. It scared me and my family as well, but the more you educate yourself the more you will see that all hope is not lost. You’ve got to live life one day at a time, live right, exercise and whatever you do no more drinking!
Well I’m going to call it a day. It’s 11 PM here in North Carolina. Take care!
You know now that I think of it more, I was on Rifampin the whole time I had PSC so my urine was always orange like so it’s possible that if it was dark due to the jaundice I would never have noticed it. Good point Jeff.
That’s why I am baffled as I have no elevated bilirubin in my blood which according to my doctor must be present to even have jaundice and dark urine. Mine is cola colored and I do seem to be jaundiced but bilirubin is in normal range!!! So its perplexing. Plus my liver is not swollen and nothing came back abnormal with ultrasound but MRCP showed scarring of bile ducts according to the doc who had them use the dye contrast also.
Mark,
I went to the specialist and he was supposed to look at the MRCP but he said he will do it when I return after 2 months and bring a recent blood test with me. Well that appt was set for Oct 19 but I didnt go because I didnt get the blood work done. I want to wait a bit to pray and build my faith up before getting the next blood test done but last one showed a jump from ALP 180 to 386 and
AST 586 ALT 376 something crazy like that but other than two episodes of drinking I hadnt drank for 2 months but before then I was drinking like a fish for 5 years and sadly now am again. He flat out told me that he is pretty sure I have PSC based on the report with the MRCP results.
He checked my stomach and said come back in two months with new blood test. I havent done it. I seem to have yellowy skin to me and itch quite a bit but not sure what caused the itching and I have red eczema on my buttocks and thighs. I do not have any elevation of bilrubin though at .7 up from .6
I think my itching is a result of a ton of acid I put on my skin in 2013 like a dummy thinking I had poison ivy and the acid from a wart remover product could help…skin went ballistic on me and has taken from then to now to get somewhat normal…the cause is unknown as I went to many dermatologists.
The Heptologist I saw is from Johns Hopkins I think so he is good. He was non chalant about drinking etc and acted like I would be fine just monitor the blood test and come back and see him after but I assume based on what the enzymes are next will tell us a lot. He did not seem to think they were elevated due to PSC at this point he said maybe the drinking???
Any thoughts? I am sure hoping I turn out like the guy on here who said he was diagnosed at 53 as I am 52 and 7 years later his doctor told him that his is progressing so slow that he will likely die of something else and he is asymptomatic.
LMK and thanks for all!
Terry
Terry,
I wouldn’t count on the disease progressing slowly at your age. I was diagnosed at 47 years old and transplanted at 52 years old, 4 some years from transplant. It’s so important that you not fall back on your drinking habits if you ever hope to get that life-saving transplant. They will make you go through a 6-month sobriety program before they will even list you, and with PSC things can turn bad real quick. Try as hard as you can and this may include disassociating with friends and acquaintances that you were with during those times of drinking. You need a revolution of thought and lifestyle to be able to face this disease head on. Keep in touch and let me know how you are getting along. I’m here for you man, just reach out as you need to.
It’s quite common with PSC to have really high wacky numbers. For reference here’s an example of one of my labs.
You have to expect high numbers with PSC. You probably need to have an ERCP done sometime which will help lower the numbers for a while and you will feel better. That will depend largely on your bilirubin though.
But ur Alt and Ast were almost normal while mine were 276 abd like 584 or something close…its very scary although i feel fine other than itching which i dont even think is related as my bilruben is normal still.I know reality cab really suck sometimes.I will try to work on the drinking and pray and eat right tooThanks BroTerry
Mark One more thing he said was he expects treatments to be developed in next few years so he was chill but its not his health issue so i guess that explains that.Terry
Terry,
Not to discourage you, but they’ve been talking about hopeful treatments for years even back in 2011 when I was diagnosed. I’m certainly hopeful, but for now you need to plan on a transplant at some point so keeping dry is so important. I hope the hepatologist you are seeing is very familiar with PSC. I did notice the my ALT/AST were in normal range compared with yours. That is very strange indeed. I’m surprised the doc didn’t have an explanation. Well just keep on taking one day at a time. Talk with you later.
One thing I will add is that when I first started seeing my hepatologist, some of my numbers were high - GGT was 1,300 at one point. Then, without any meds, they dropped down to almost normal for a time, only to shoot back up again.
I will also say that before we knew what was going on with me having liver issues, I was an occasional drinker, and started noticing that every time I drank, I really felt like crap. I haven’t had a drink since I was diagnosed with liver issues.
