About the New Member Introductions category

Welcome New Member Introductions
21

Hi Julie, just read through your story. It sounds like you have a wonderful, positive attitude about your journey and a wonderful support system at home. Just wanted to see how things are going for you?

My husband John just went through his own PSC journey. He was diagnosed at age 54 and here we are now in the hospital celebrating our new liver nine months later.!! There is no set course of evolution it seems for PSC and as I’m sure you have read here some people remain symptom-free for years and others have a different experience. God bless and stay in touch.:hibiscus:

22

Rose, so glad your hubby received a liver. Happy for you both.
Jeff

23

Hi my name is Gary and I had a liver transplant 15 years ago in 2004. 5 years prior to that I had a total Colectomy operation due to UC. I had a colostomy bag for a while which was replaced with a pelvic J pouch.

I was recovering fairly well until I had bile duct reconstruction in 2014. I have not regained my energy level that I had prior to that operation.

I have been on a variety of meds over the years but, am currently taking Advagraf and Cellcept along with a variety of high blood pressure meds as well as a host of vitamins and supplements.

I manage the itch with Betaderm for the large undefined areas and Mometasone cream for the smaller acute areas.

I’m dealing with sever fatigue by adding Melatonin to help with Insomnia and large doses of B12, D, and C. So far there’s some improvement but, not fast enough. :-))

I do pencil drawings when I’m up to it. Here’s the link to some of them.

24

Gary,
Welcome to the group. Sounds like you have been through quite an ordeal. Was your transplant due to PSC liver disease or some other form? You mentioned that you are having itching now. Have you had recurrent PSC diagnosed.
With energy levels so low how are your liver lab numbers now? Do you know what your current MELD score is. What prognosis have your doctors given you moving forward, etc.?
Please feel free to reach out to the group here. We will try and help in any way we can. Take care. Oh, by the way, your pencil drawings are out of this world! Very talented work. I imagine you could sell any of your work it’s so good. Thanks for sharing.

Mark
PSC 2011 / Liver Transplant 2015

25

Thanks Mark for the warm welcome.
Yes, my transplant was due to PSC. I suspect the itch is PSC related although some research suggests an Iron deficiency which could be related to the pelvic j pouch.
I don’t get specific lab details other than “the numbers look good” when I see my specialists. Kidney function is ok but “needs to be monitored”. I had elevated kidney numbers recently which was the result of drinking too much Gatorade. As soon as I stopped, the numbers went down.
Thanks for the compliments on my drawings. I don’t sell them, I do them for friends or when one of their friends loses a pet. It seems to help them cope with their loss. I haven’t done many lately but, did a couple as surprise presents this past Christmas. I get a kick out seeing their look when they see it. And it’s sort of a way for me to give back.
I really appreciate the general discussion section of this web site. It’s nice to be able to relate to the same issues other people are dealing with. I just don’t get the same connection with the doctors.

Gary
PSC 1997 / Liver Transplant 2004

26

Gary, you and I have the same battle scars.

Glad you have an outlet for your creativity that you can use with despite lower energy levels. Good work.

My energy is not 100% either, and the last 6 months or so even less due to pouchitis. I occasionally itch in the same pre-transplant places, but that may just be due to habit.

27

Yes Jeff, I’ve had that pouchitis several times and it could be the cause of my issues now. I’ll have to check with my family doctor and see what he thinks. I really think the bile duct reconstructive surgery I had in 2004 was the main reason for my decline. I never really recovered after that. I still don’t know why they had to do it.

It’s great to connect with people with similar experiences through this web site. I’ve always felt kind of alone even when I go to the liver clinic. I could never discuss these issues with family or friends, and the Doctors are only concerned with the numbers. I even went to a Naturopath who diagnosed Lime disease which would have required blood transfusion cleansing with ultraviolet and ozone every other day for 2 weeks. No thanks! He did, however, recommend high doses of Vit B12 and Vit D which I’ve tried but, haven’t seen much improvement. I’m curious about B12 shots and IV Vit C which have mixed reviews.

Thanks Jeff, for your comments and hope you find some relief for your low energy and itch.

GaryT

28

Hello -

My name is Ryan Allen. I am new here and and still dealing with processing the fact that I have PSC. For years my liver enzymes were elevated and no one really knew why. In October 2017 I saw my doctor due to excessive itching that had been going on for a few months and as soon as he brought up Hep B I mentioned the history of my liver enzymes. To keep it short, many referrals, procedures and additional symptoms here I am with PSC.

The difficult thing for me is I have been hospitalized 3 times in the last 18 months for internal bleeding due to esophageal varicies and the fatigue is kicking my butt.

I am happy to be here as I have done much reading on this site but only recently decided to join officially.

Ryan

29

Ryan,
Welcome to to this PSC forum. We are glad you joined and are here to answer any questions you might have about PSC, support you and listen to your concerns and worries. PSC progresses at different rates in each patient. It can be so unpredictable at times, but there is always hope and you must not let PSC get in the way of you pursuing your dreams and future. Live life to its fullest. PSC will let you know when you need to rest or get intervention. Learn those warning signs and know how to react to them. This is not a disease to keep to yourself but you need to educate your family and close friends to what’s going on with your life. This is a rare liver disease and hits folks from all walks of life. Please know that we will be right here with you along the journey so reach out anytime. Again a very warm welcome.

Mark
PSC 2011 / Liver Transplant 2015

30

Thank you for the kind words. I am grateful to have found somewhere to turn to in moments of uncertainty!

Ryan

31

I am new to the group…I was diagnosed with PSC in 1999 and I was senior in High School. I was also diagnosed with Autoimmune Hepatitis and started taking Urso and Imarun… I was later told by my heptologist at Tulane that he didn’t think I had Autoimmune Hepatitis. I was pretty much asymptomatic my whole life besides elevated liver enzymes but nothing to irregular. Last year I had a poor blood work and it led to a ERCP which they told me I had mild scarring of the large duct. They recommend I participate in a Clinical trial for the phase 3 Gilead drug GS 9674 so I have been apart of the study for 6 months and my blood work is trending back to normal ranges but today I got a fibroscan of 10.5. I had a biopsy done before I was let into study and my first fibroscan was 6.7 now my blood work is trending back to normal but the fibroscan is off. I also got diagnosed with UC last year and began taking Meslamime lately and am having a colonoscopy next week. My UC symptoms are very minimal. I know a lot of you guys have been dealing with this disease for year. Are there anybody in the study in this group. Also, Fibroscan experiences? Any feedback is appreciated.

Patrick PSC 1999 UC 2019

32

Patrick,
I was offered the chance to do a clinical trial, but chose not to.
Strike two in that I never had a fiber scan.
I hope your UC stays asymptomatic as possible. Dealing with two active diseases is not what you want.

Would probably recommend you repost in the general category, as I would think you would have more responses there than in this category.
Jeff

33

My name is Janis. I’m the caregiver to my husband who was diagnosed in March of this year. We definitely have more questions than answers. He was initially put on Urso but it made him so nauseous that he discontinued as he was already on a natural supplement for the same purpose. His biggest issues are fatigue, nausea, and a very distended stomach. Everything we’ve tried so far for the stomach-OTC gas relief, probiotics - haven’t touched it. We’re meeting with a nutritionist this week. He’s been gluten free for awhile as we discovered, before his diagnosis, that he cannot tolerate gluten.

I’m glad to find this group. Thank you all for sharing your stories.

34

Janis,
Thanks for your post. I’m sorry your husband is having such a difficult time. What times of day was he taking URSO and what is his prescribed dosage? It does make a difference when you take it and you have to play around sometimes with how much to take at different times of the day to figure out what works best for him. It is a good medication though to thin the bile and make life more manageable. I do understand about nausea. I had it really bad at times. One thing that helped me a lot and you may want to ask his hepatologist about, is Zofran. It is a non-drowsy medication to control nausea. Also, have some ginger ale on hand or even better, from a whole foods store you can purchase the ginger beer. It has a stronger concentration of ginger which helps with nausea. Fatigue is a big part of the life with PSC. I would encourage him to get in some form of core strengthening exercise in a day, even if it’s 30 minutes walking around the yard or on the treadmill. I was fortunate to not have to miss any work during my years with PSC, but many a day I came home and collapsed in my chair and slept till supper from the utter exhaustion. He will need all the TLC you and your family can give him. One of my dear daughters would often come home from work and just rub my feet for a while. It really made me feel better. She is also a harpist and played for me many a night just to relax me during those difficult times of pain and suffering. There is hope through all this. Keep on living life, planning for the future and not let this disease control you. Make sure he’s under the care of a hepatologist associated with a transplant hospital. They are the experts in the diagnosis and treatment of liver disease and can make your path to the transplant list when needed go smoothly.
We are here for you so don’t hesitate to reach out with any questions or concerns you or he may have. And if the need arises, I’m more than happy to speak with him by phone. Take care.

Mark
PSC 2011 / Liver Transplant 2015

35

Hello, I am new here and I want to tell you my story. Because when i was diagnosted I was looking for inspiration good ending story everywhere. First of all I am sorry about my english, not the best. I am from Czech republic small republic in middle of Europe, with great health care system.

I was diagnosed with PSC and UC at 2014. I started use urso and asacol. My problem was diarrhea and high liver test. No other problem with PSC. Asacol worked very well for me but only something like half year. After 6 month i had same problem with diarrhea as befor asacol therapy. I didnt want harder therapy than asacol, so I was looking for something what i can do myself. I found SCD diet and started to do it. After 1 year of diet i was absolut ok, was stoping use asacol and went back to normal eat life style ( carbohydrates back in my diet). I never did asacol and other therapy for my UC never again since now. UC just left me after 1 year SCD diet.

So actually my problem is only PSC. My liver test go higher by years. I started to do lot of workout. In years 2017 to september 2019. I also had high igg4 levels in my blood tests. When my liver tests go higher and higher, my docter want to try corticosteroids therapy ( try if i had igg4 sclerosing cholangitid) i didnt expect it will work for me, coz just had high igg4 in blood, but igg4 SC is absolut rare disease, for me its better than PSC, coz its trestable by drugs (medrol). Its started to work at high dose of medrol (14 mg) my liver enzyms go down to normal. Every 3 months we go down with medrol therapy and stop in 2 mg, there therapy stopped work a my liver enzyms go slowly high. Now i m back in 6 mg, coz its still go slowly up. Just saying my enzyms go down and down with medrol and my workout. Not sure about this connection( coz od time i must stop doing workout and o dont eat healthly actually) I will start workout again and I want go with medrol to 0 mg, coz i know how bad is medrol in long term.

I just want said this story, coz i saw me with lot of problem how time go. I feel super bad after diagnosis and read about about only one cure ( transplantation) i was scary by transplantation. Feel super depressed, but i started worked on my diet ( workouts helped my head). I feel reborn now, i am father of my firts kid. Its 7 years after diagnosis and i have no issue. I have only one problem and its slowly high liver tests ( btw in scd diet my liver test was normal, even without medrol). I think clean mind is key for destroy this disease. I absolut think its in food and in head. So never go depressed and try to fill your body with endrophins. Try workout, any diet what you think will work. Try wim hof metod, try find love. Whatever clean your mind. Its super importent, coz this can save your life!

36

Rekrousek,
Glad you are able to live life on your terms. That is what PSCers want to do.

There is a balance of when symptoms rear their ugly head and living our lives.

You mentioned something very important about clearing your mind. Having a strong mental outlook will be key in getting through the stuff that PSC can bring a patient’s way. Having this outlook, a good sense of humor, flexibility and patience will be of immense help and can get you through many bad days. We will all have them at one time or another.

Jeff

37

Hi, my husband has been diagnosed with PSC some days ago after almost a year of liver enzymes through the roof (ALP was in 2000). He began taking prednisone 40mg, ursodiol 1000mg and immuran in october 2020 and his lab test have been getting better. He even looks much better, but the thing is that this new hepatologist in the transplant clinic is now saying that Ursodiol is bad for people with PSC and wants to stop prescribing it. I want to know if any of you have been told that you should stop ursodiol.

38

There are a number of differing opinions about the use of Ursodiol in PSC patients, but I can tell you from experience that it will give one a better quality of life. PSC isn’t going to go away, but there’s no reason that you have to suffer so much with it. Urso will help to thin the bile so that it can drain better around the strictures that form in the bile ducts. I was on 1200 mg of URSO a day my entire time pre-transplant. Tell the doctor that it is a quality of life issue and that you want to continue if at all possible. You may even want to get a second opinion from another transplant hepatologist as well. Of course, I am speaking from a patient’s perspective, not a physician, but that is my experience with the use of URSO. I wish your husband well. Don’t give up the fight. There is hope and there is life even with PSC.

Mark
PSC 2011 / Liver Transplant 2015

39

Hi Everyone! New to the site.

Newly diagnosed with PSC and very curious to find a doctor (preferably experienced in treating it) in the Washington DC area (or even at JHU in Baltimore). Any suggestions?

I have had auto-immune issues for most of my life. I had bad anaphylatic food allergies and asthma as a young child; got Ulcerative Colitis around 15, and then 15 years later got Tyoe 1 diabetes. Now about 20 years after getting T1D, I apparently have PSC.

So, it seems like every 15 to 20 years my immune systems turns to attacking some other system. The really weird thing is that when I first became diabetic (and it came on very quickly, my pancreas went from working normally to failing in a matter of moths) my Colitis almost immediately got much better. Since then I basically went into remission, and while I still have to take Asacol or Lialda for it, it has basically been in remission ever since. Also. my anaphyltaic allergies got better. It was like once my immune system turned to attacking my pancreases, it backed off attacking my colon. I have never been able to get any answers as to why that happened, or even a good theory about it.

Anyways, I just had my first Fibroscan today, and was surprised how bad the results were. My CAP/ Steatosis score for fatty liver was 400, and my Fibrosis score was 12.8. My most recent MRCP which triggered the PSC diagnosis and the need for the Fibroscan only showed only early stage scarring, and while my Alk Phos. has been slightly elevated for 3 years now, my last blood-work from 30 days ago (done at the same time that I did the MRCP) showed it dipping down into the high normal range. This was my second MRCP; I had my first one 3 years ago when my Alk. Phos. first started being chronically high. The first MRCP from 3 years ago only showed early fatty liver disease and did not show any signs of PSC at that time.

As noted above, very interested in finding docs in the DC (or Baltimore) area that know about PSC, and are active in research. I am interested in being part of research, and feel that the common thread of all of my auto-immne conditions, and how they have turned on & off, might be interesting to an inquiring researcher.

Also, do folks who have been through this before think I am probably looking at a recommendation for a biopsy to more accurately stage my liver disease? I get the sense that since the Fibroscan showed a later stage of disease than was indicated by the MRCP and my bloodwork, that these inconsistent results will probably push my doctor towards wanting a liver biopsy to get a more accurate picture. Thoughts?

.

40

Joe,
Welcome to the group. Thanks for sharing your story. I’m sure others will chime in as well. I would encourage you to find a hepatologist associated with a transplant hospital where you are living now. They can follow you throughout the course of the disease progression and give you the best of care. You may or may not need a liver biopsy. I wouldn’t necessarily ask for one unless the doctor believes it’s needed. There are always risks even with a biopsy especially of the liver. I’ve had two of them and did ok, but I was part of a drug trial at the time for PSC. What is your bilirubin currently? Have the done an endoscopic ultra sound and/or ERCP?
Please feel free to ask any questions or respond to any of the posts throughout the forum. We are here to help you.

Mark