Does anyone know roughly how long it will be until you need a liver transplant after diagnosis? If you are relatively healthy and treat your body and liver well, is it still almost guaranteed you will need a transplant, and if so how long does it take for your liver to be completely filled with bile?
Also, is there any type of diet to follow with PSC?
Most studies say median time is 10-15 years from diagnosis (to either transplant or death). One more recent Dutch study concluded that 20 years (maybe because diagnosis is often made earlier there).
These are median times i.e. for half of the people it takes more than the median.
Currently, no FDA approved medication exists, but promising research and clinical trial progress is found. Oral vancomycin seems to work for many psc patients i.e. it has stopped psc progress. Some doctors are prescribing it, but insurance does not cover it always. Oca, norudca and several others are also being tested in clinical trials.
There is no specific diet, although limiting fatty foods, sodium and alcohol will usually be good ideas.
As psc progresses, vitamins A, D, E and K will not be absorbed well, so supplements might be called for at some point.
As far as bile backing up into the liver, my first and hopefully last cholangitis attack (where liver backs up and gets infected) took over two months before it put me in the hospital.
Jeff,
Thank you for your input. I will take all of that into consideration!
When you were hospitalized due to your last attack, were your symptoms before you were hospital used itchiness, fatigue, jaundice and the usual side effects?
Are there any medications over the counter that people with PSC are allowed to take for headaches and stomach aches? Because I know we are extremely limited to the medicines we can expose ourselves too.
Also, are people with PSC allowed to go under anesthesia? I am supposed to get a small procedure (more of a test) done which usually involves being put under anesthesia. I wasn’t sure if that is something we still have to completely avoid along with all of the other things we have to stay clear from.
Thank you,
Olivia
JeffDC said:
Agree with Ted on the time frame.
There is no specific diet, although limiting fatty foods, sodium and alcohol will usually be good ideas.
As psc progresses, vitamins A, D, E and K will not be absorbed well, so supplements might be called for at some point.
As far as bile backing up into the liver, my first and hopefully last cholangitis attack (where liver backs up and gets infected) took over two months before it put me in the hospital.
PSC is not a contraindication for anesthesia. Severe liver function damage will affect metabolism of anesthetics. Coagulation disorder could increase bleeding risk. Anesthesiologists can modify their anesthesia plan to reduce potential risk.
Think this way. If PSC patients are not allowed to receive anesthesia, how can they receive liver transplant?
liv234 said:
Jeff, Thank you for your input. I will take all of that into consideration! When you were hospitalized due to your last attack, were your symptoms before you were hospital used itchiness, fatigue, jaundice and the usual side effects? Are there any medications over the counter that people with PSC are allowed to take for headaches and stomach aches? Because I know we are extremely limited to the medicines we can expose ourselves too. Also, are people with PSC allowed to go under anesthesia? I am supposed to get a small procedure (more of a test) done which usually involves being put under anesthesia. I wasn't sure if that is something we still have to completely avoid along with all of the other things we have to stay clear from.
Thank you,
Olivia
JeffDC said:
Agree with Ted on the time frame.
There is no specific diet, although limiting fatty foods, sodium and alcohol will usually be good ideas.
As psc progresses, vitamins A, D, E and K will not be absorbed well, so supplements might be called for at some point.
As far as bile backing up into the liver, my first and hopefully last cholangitis attack (where liver backs up and gets infected) took over two months before it put me in the hospital.
Olivia, you named the symptoms perfectly-itching, fatigue, and jaundice. A few weeks before I went to the hospital, my face was a beautiful shade of yellow and gray. In other words, I looked and felt like @#@%%$#.
My standing order now is that if I have an unexplained fever of over 101 degrees, to get to the ER. If it is a cholangitis attack, it needs to be treated and documented as it can bump up your meld score and get you closer to a transplant if needed.
I am not up to speed on the issues of medicine, so I will defer to our other members, although I know that ibuprofen is not a good thing to take.
Jeff
liv234 said:
Jeff, Thank you for your input. I will take all of that into consideration! When you were hospitalized due to your last attack, were your symptoms before you were hospital used itchiness, fatigue, jaundice and the usual side effects? Are there any medications over the counter that people with PSC are allowed to take for headaches and stomach aches? Because I know we are extremely limited to the medicines we can expose ourselves too. Also, are people with PSC allowed to go under anesthesia? I am supposed to get a small procedure (more of a test) done which usually involves being put under anesthesia. I wasn't sure if that is something we still have to completely avoid along with all of the other things we have to stay clear from.
Thank you,
Olivia
JeffDC said:
Agree with Ted on the time frame.
There is no specific diet, although limiting fatty foods, sodium and alcohol will usually be good ideas.
As psc progresses, vitamins A, D, E and K will not be absorbed well, so supplements might be called for at some point.
As far as bile backing up into the liver, my first and hopefully last cholangitis attack (where liver backs up and gets infected) took over two months before it put me in the hospital.
For pain killer, if you have to use it, Mayo doctors actually recommend tylenol. Of course, you need to watch very carefully about the total dose. Their explanation is that tylenol, if you use limited dose (your maximal dose will be half of maximal dose for other people), will cause very limited damage to your liver. Other pain killers, even used properly, will cause damage to your kidney. Because you are going to have a new liver anyway, the protection for other organs is more important than that for your liver. I find that reasoning very interesting, but definitely reasonable.
liv234 said:
Jeff, Thank you for your input. I will take all of that into consideration! When you were hospitalized due to your last attack, were your symptoms before you were hospital used itchiness, fatigue, jaundice and the usual side effects? Are there any medications over the counter that people with PSC are allowed to take for headaches and stomach aches? Because I know we are extremely limited to the medicines we can expose ourselves too. Also, are people with PSC allowed to go under anesthesia? I am supposed to get a small procedure (more of a test) done which usually involves being put under anesthesia. I wasn't sure if that is something we still have to completely avoid along with all of the other things we have to stay clear from.
Thank you,
Olivia
JeffDC said:
Agree with Ted on the time frame.
There is no specific diet, although limiting fatty foods, sodium and alcohol will usually be good ideas.
As psc progresses, vitamins A, D, E and K will not be absorbed well, so supplements might be called for at some point.
As far as bile backing up into the liver, my first and hopefully last cholangitis attack (where liver backs up and gets infected) took over two months before it put me in the hospital.