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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Not Sure whats going on

My husband was told he has PSC.

He did MRI scan and shows the the extrahepatic ductal system is of narrow calibre.

The intrahepatic biliary tree shows marked stricturing with alternating areas of segmental dilatation.

Kidneys,pancreas ans spleen appear satisfactory.

Pancreatic duct calibre and contour appear normal.

No focal liver lesion.

Gall bladder appears satisfactory,well distended without appreciable calculi.

Our Dr then told us nothing can be done, just waiting for time for it to get worst and yeah... ( which doesnt help at all) she then add you could get sick next day,next week,next month or next year.

We were in shocked especially my husband who is so depressed and distraught.

When I asked should he changed his diet she said "NO".

Not sure is she really care.... I'm trying to look and read more about this PSC and I am at lost. He will be tested for Celiac next week.

At the moment my hubby only has itching skin. Does anyone knows from the MRI result what does that mean as the DR make it seems he not much time left... :(

Your husband's MRI results are pretty typical with PSC. Progression is unpredictable and varied - some people go 20+ years after diagnosis before needing a transplant, others only 6 months. The PSC practical guidelines that your doctor is following reflect the fact that there is not yet a conclusive treatment for stopping progression; the recommendation is to only treat symptoms. That said, there are a lot of treatment options being investigated that are in various stages of clinical trials and a lot of us decide to take a more proactive approach mirroring these trial protocols in an effort to stop progression.

I recommend running a search in this group for itching, diet, and Vancomycin (also google: psc itching, psc diet, and psc Vancomycin). Also make sure that your husband's doctor has taken labs for fat soluble vitamins (ADEK). It is very common for PSC patients to be deficient and it can lead to a lot of issues including osteoporosis (a bone density scan isn't a bad idea).

Like JTB said, the MRI report sounds about normal for pscers. Glad the pancreas, kidneys and spleen look good; I worry about my pancreas ducts.

For a lot of psc treatment, it is a treatment of symptoms, like stents and balloon dilations....I am not too familiar with the medications that are out there, but from what I have read, none have been found to be very effective, long term. The only really effective treatment is a transplant, and even at that, psc can return.

While a good indicator of problems, the MRI is not as good as his blood work. Several components of the blood work are used to form a MELD score, which is a much better indicator of impending trouble. The higher the score is, the worse the patient's health is.

Much of the fight against psc is mental, as it will test his patience and sense of humor. And yours. Remember that any day out of a hospital is a $%&#^&# good day. That's not always easy to believe.

Thanks for the reply. yeah I will ask more on the diet and itching and search up more on this since the Dr doesnt really help much. I think he start or suspect to have bone deficiency as he shattered his bone small finger when he was catching the Footy Ball. Which was strange or it could be how the ball had landed on his hand.

But yeah will update once we know the result from the Celiac test.



jtb said:

Your husband's MRI results are pretty typical with PSC. Progression is unpredictable and varied - some people go 20+ years after diagnosis before needing a transplant, others only 6 months. The PSC practical guidelines that your doctor is following reflect the fact that there is not yet a conclusive treatment for stopping progression; the recommendation is to only treat symptoms. That said, there are a lot of treatment options being investigated that are in various stages of clinical trials and a lot of us decide to take a more proactive approach mirroring these trial protocols in an effort to stop progression.

I recommend running a search in this group for itching, diet, and Vancomycin (also google: psc itching, psc diet, and psc Vancomycin). Also make sure that your husband's doctor has taken labs for fat soluble vitamins (ADEK). It is very common for PSC patients to be deficient and it can lead to a lot of issues including osteoporosis (a bone density scan isn't a bad idea).

I really hope he can get on this site and start reading some of the posting. To know he's not the only one.

I think he is still in a big shock and still trying to reason why him????????

But I will keep trying and I will keep reading any post there is in here and learn from everyone here with PSC or Partners or family with one.

Its hard when every one ask how is he? and no one ask How am I feeling? :(

Trying very hard to keep the kids happy as if nothing is happening, trying to cheer or talk to him.

Even I am scared to say I'm having a massive headache and I need a bit of rest.



JeffDC said:

Like JTB said, the MRI report sounds about normal for pscers. Glad the pancreas, kidneys and spleen look good; I worry about my pancreas ducts.

For a lot of psc treatment, it is a treatment of symptoms, like stents and balloon dilations....I am not too familiar with the medications that are out there, but from what I have read, none have been found to be very effective, long term. The only really effective treatment is a transplant, and even at that, psc can return.

While a good indicator of problems, the MRI is not as good as his blood work. Several components of the blood work are used to form a MELD score, which is a much better indicator of impending trouble. The higher the score is, the worse the patient's health is.

Much of the fight against psc is mental, as it will test his patience and sense of humor. And yours. Remember that any day out of a hospital is a $%&#^&# good day. That's not always easy to believe.

Jackal, when it comes to caregivers, most people do know to ask how the caregiver is doing. It may come down to education, volunteering how you're doing, asking for help-which can be hard.

I learned when I was going through my colitis fight how hard it was on my wife, especially after my surgery. It usually takes something like that for a person to realize what a family member/caregiver goes through.

Don't take personally someone's not knowing.

Dealing with kids can be problematic, I think. What to tell them can be based on their age and maturity. But they probably know that something is wrong.

Jeff

Jackal said:

I really hope he can get on this site and start reading some of the posting. To know he's not the only one.

I think he is still in a big shock and still trying to reason why him????????

But I will keep trying and I will keep reading any post there is in here and learn from everyone here with PSC or Partners or family with one.

Its hard when every one ask how is he? and no one ask How am I feeling? :(

Trying very hard to keep the kids happy as if nothing is happening, trying to cheer or talk to him.

Even I am scared to say I'm having a massive headache and I need a bit of rest.



JeffDC said:

Like JTB said, the MRI report sounds about normal for pscers. Glad the pancreas, kidneys and spleen look good; I worry about my pancreas ducts.

For a lot of psc treatment, it is a treatment of symptoms, like stents and balloon dilations....I am not too familiar with the medications that are out there, but from what I have read, none have been found to be very effective, long term. The only really effective treatment is a transplant, and even at that, psc can return.

While a good indicator of problems, the MRI is not as good as his blood work. Several components of the blood work are used to form a MELD score, which is a much better indicator of impending trouble. The higher the score is, the worse the patient's health is.

Much of the fight against psc is mental, as it will test his patience and sense of humor. And yours. Remember that any day out of a hospital is a $%&#^&# good day. That's not always easy to believe.

Thanks Jeff,

Seriously I was lost but with this site and the amount of people contributing just felt right.

Jackal,

I agree with JeffDC and jtb about PSC treatment and such. Still, you need a good gastro/hep team as I just mentioned in my other response to you. I too have found this support group to be my lifeline to sanity through this. I go through my spells of needing more support at certain junctures. Stay onboard with us because even though it is virtual ... it is real!

For my partner, cholestyromine powder seems to help with the itching. Also, the vitamin thing is really important and keeping regular visits and records of all testing is important for many reasons. My partner is still working and feels pretty rotten most of the time. (MELD is 14) . Sleeping is often the weekend "hobby" unfortunately... but it is part of the adjusting to the "new normal". So, as a caregiver, you learn to make it OK and work around it. I agree, too, with what JeffDC said about "much of the fight against psc is mental". I try to just work on true RADICAL ACCEPTANCE of whatever comes. (Easy to write on paper... more challenging to actually do... but I try). Stress wreaks havoc on the PSC body, (and all bodies for that matter) so if I am able to manage mine, in turn it helps to manage my kids AND my dear, darling PSC'er.

Thanks Dolphin5 for your reply... Every replied I get is always a blessing.

I am keeping it strong and keeping it together. Hubby feeling much better and beginning to accept it and moving on

slowly. One day at a time. Also got the result that he has Celiac and now learning about it too.

I have learnt so much from this support group with all the amazing strong people that I read about their journey.

Bigs hugs to you and everyone here..
Dolphin5 said:

Jackal,

I agree with JeffDC and jtb about PSC treatment and such. Still, you need a good gastro/hep team as I just mentioned in my other response to you. I too have found this support group to be my lifeline to sanity through this. I go through my spells of needing more support at certain junctures. Stay onboard with us because even though it is virtual ... it is real!

For my partner, cholestyromine powder seems to help with the itching. Also, the vitamin thing is really important and keeping regular visits and records of all testing is important for many reasons. My partner is still working and feels pretty rotten most of the time. (MELD is 14) . Sleeping is often the weekend "hobby" unfortunately... but it is part of the adjusting to the "new normal". So, as a caregiver, you learn to make it OK and work around it. I agree, too, with what JeffDC said about "much of the fight against psc is mental". I try to just work on true RADICAL ACCEPTANCE of whatever comes. (Easy to write on paper... more challenging to actually do... but I try). Stress wreaks havoc on the PSC body, (and all bodies for that matter) so if I am able to manage mine, in turn it helps to manage my kids AND my dear, darling PSC'er.

Jackal,

Just wanting to check to see how your husband is getting along these days. One thing I didn't read in your post was whether they did an ERCP on him or not? That would bring about some really good quality of life to him if they can dilate the ducts and get greater bile flow. I would not recommend you having your local GI doctor do this. It needs to be done by a specialist at a major hospital that does transplants. They do this every day and it is a very invasive but needful procedure for PSC patients. I had 5 of them over 4 years before transplant. Hope this might be of help. Take care.

Mark

PSC 2011 / Liver Transplant 7-2015

Hi Mark,

Sorry for the late reply, we have been so busy with work and studies and the school holidays and kids.

Hubby had his 1st appointment with a new specialist as we had ditch the old one.

This new DR wants him to do a colonoscopy to test if he has IBD/IBS which he dont have any symptoms except for mucus in the bowel but even that is rarely and now being Coeliac and had been on the Gluten Free diet its once in a while kinda of thing that he will have this mucus.

So he is not sure why the DR wants him to do this and his last LFTs level is not getting better infact had increase and he's itching is getting quite bad too..

So we really dont know what to do at the moment..

fcmmark said:

Jackal,

Just wanting to check to see how your husband is getting along these days. One thing I didn't read in your post was whether they did an ERCP on him or not? That would bring about some really good quality of life to him if they can dilate the ducts and get greater bile flow. I would not recommend you having your local GI doctor do this. It needs to be done by a specialist at a major hospital that does transplants. They do this every day and it is a very invasive but needful procedure for PSC patients. I had 5 of them over 4 years before transplant. Hope this might be of help. Take care.

Mark

PSC 2011 / Liver Transplant 7-2015

Your husband's doctor is covering all the bases. Most people with PSC have some form of IBD and it is good to rule it in or out conclusively via colonoscopy. If your husband has a silent/asymptomatic form of IBD, it is important to know so that he is regularly monitored for cancer.

Has your husband tried any of the itching medications?

Jackal,

JTB's correct. Part of routine PSC treatment are regular colonoscopies. There's so much that could happen with liver disease and they are wanting to rule out UC as well as colon cancer. With the bile not flowing as it should with PSC the linings of the colon get so much more difficult digestion issues which can cause damage to it.

As far as the itching is concerned, we all have our favorite itch relief method. The only thing that worked for me was a prescription drug called Rifampin. I took 300 MG twice a day and it took 98% of my itching away. That should bring him relief. None of the creams or over the counter meds helped me. Take care.

Mark

PSC 2011 / Liver Transplant 7-2015