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rksheldon
@rksheldon

Posts: 3
Joined: Nov 04, 2018

How long can PSC lie dormant?

Posted by @rksheldon, Sat, Nov 10 12:51pm

Seeking the length of time that disease lays dormant. Jaundice 25 years ago one time. Should I worry about another attack???

REPLY

Hi, rksheldon. Welcome to Mayo Connect.
Liver failure as a result of PSC, Primary Sclerosing Cholangitis, is the reason for my organ transplant. After I was initially diagnosed, I was able to live around 9 years pretty much symptom free. During those 9 years I was closely monitored by my GI who consulted with a hepatologist. Every 3 months I had an appointment, and labs drawn.

Here is a link to the Mayo Clinic Patient Care & Health Information. Primary sclerosing cholangitis
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797

How is your disease being monitored?

@rosemarya

Hi, rksheldon. Welcome to Mayo Connect.
Liver failure as a result of PSC, Primary Sclerosing Cholangitis, is the reason for my organ transplant. After I was initially diagnosed, I was able to live around 9 years pretty much symptom free. During those 9 years I was closely monitored by my GI who consulted with a hepatologist. Every 3 months I had an appointment, and labs drawn.

Here is a link to the Mayo Clinic Patient Care & Health Information. Primary sclerosing cholangitis
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797

How is your disease being monitored?

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Gastroentrologist every 6 months.

@rksheldon

Gastroentrologist every 6 months.

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rksheldon, I am happy to read that you are being seen regularly by your GI. I think that it is important to have a partnership with our care provider when we are living with a disease like PSC.
I want to add to my own history with PSC. It was diagnosed when my GI, working with a hepatologist from transplant center, performed an ERCP, and took images of my biliary tree and noted that the signature signs (scarring and gnarling) of PSC were visible. I had already been tested for many other liver diseases before they felt the need to do this test. My Gi was extremely concerned and kept close watch over me during that time. I did experience occassional nausea, and tiredness, and increasing faitgue which are symptoms for liver disease.
I remember that we were watching my liver functions slowly rise for a while. Then very suddenly, those symptoms became more severe as itching, and jaundice developed. At the same time my liver function labs made a huge jump. I was sent to transplant center for examination at that time. My condition deteriorated very quickly within a matter of months.

I tell you this, not to scare you, (each one of us will have a different experience) but to demonstrate how quickly things can plunge downhill.

rksheldon –
Do not hesitate to contact your GI in between those 6 month appointments if you are having any issues. Or make an appointment to consult with him/her about your own questioin; Where am I with this disease? and What can I expect?

How are you feeling these days?

@rksheldon, I have been searching online, and I came across this site about PSC. I want to share it with you.
https://pscpartners.org/

You will see a read more section for "LEARNING ABOUT PSC" .
When is your next Gi appointment?

Hi @rksheldon, I add my welcome to Rosemary's. You'll notice that I modified the title of your discussion to match the question you ask the group. I'm not sure "lie dormant" is technically correct. I believe that because PSC progresses very slowly, many patients may have the disease for years before symptoms develop. I'd like to invite other members with experience with PSC, like @jacinta and @sandyblair, along with Rosemary to weigh in.

Sheldon you can also join this discussion
– Primary Sclerosing Cholangitis (PSC) https://connect.mayoclinic.org/discussion/psc/

Have you been diagnosed with PSC?

@rosemarya

rksheldon, I am happy to read that you are being seen regularly by your GI. I think that it is important to have a partnership with our care provider when we are living with a disease like PSC.
I want to add to my own history with PSC. It was diagnosed when my GI, working with a hepatologist from transplant center, performed an ERCP, and took images of my biliary tree and noted that the signature signs (scarring and gnarling) of PSC were visible. I had already been tested for many other liver diseases before they felt the need to do this test. My Gi was extremely concerned and kept close watch over me during that time. I did experience occassional nausea, and tiredness, and increasing faitgue which are symptoms for liver disease.
I remember that we were watching my liver functions slowly rise for a while. Then very suddenly, those symptoms became more severe as itching, and jaundice developed. At the same time my liver function labs made a huge jump. I was sent to transplant center for examination at that time. My condition deteriorated very quickly within a matter of months.

I tell you this, not to scare you, (each one of us will have a different experience) but to demonstrate how quickly things can plunge downhill.

rksheldon –
Do not hesitate to contact your GI in between those 6 month appointments if you are having any issues. Or make an appointment to consult with him/her about your own questioin; Where am I with this disease? and What can I expect?

How are you feeling these days?

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Lots of aches and pain. had a colectomy and j pouch. Tks For ideas. ron

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