Just diagnosed with PSC

A hepatologist who works with a transplant team is a good bet because they will very likely have experience with PSC patients. You can often become a patient even if you aren’t currently on track for transplant.

Hi Mar lena, it was great to hear back from you. Ed is going through the
fatigue and he is in pain from his arthritis. He is off the pain pills for
it since he was diagnosed with PSC. At our next appt December 8th we will
talk to his hepatoligist if there is anything he can take. He has the
itchiness off and on. His last mri did not show anything that looked
cancerous. He has lost weight, so I am worried about that. He still gets
out walking. He has to cause the dog waits for him . LOL. I have him
drinking a boost supplement drink for the protein. Oops I have to get back
to work. I enjoy having someone to talk to. He holds stuff back from me.
Thank you. You take care. If you don’t mind us checking in with each other
that would be great.

http://www.livingwithpsc.org/users/marlena

MarLena http://www.livingwithpsc.org/users/marlena
November 17

Hi Marie! I’m doing well, thanks for asking! My visit with the GI was
good. He did a colonoscopy on Tuesday and I don’t have UC or polyps, so
that was great news. I see the surgeon on Monday to schedule gallbladder
removal and he will biopsy my liver at that time and I’ll know what stage
of PSC. My PSC is intrahepatic, not sure what that means in the long run?
I’m feeling pretty good. I told him about the pain in the URQ which goes
around my side and to the back. He said I shouldn’t be having pain, so
after the gallbladder is removed if I still do he will reassess. I’m pretty
sure it’s my gallbladder, so I’m hoping once it’s removed I’ll have a
significant difference.
I feel like I have a lot of joint pain. I was walking 3 miles a day
before I had my hospital stay in September. I’ve worked myself back up to 2
miles almost every day. I know I have arthritis in my knees, but my hips
feel sore all the time. I take a multivitamin and osteo biflex each day,
but don’t know if they’re really helping.
I’ve had 2 days of total fatigue where I just feel like I can’t function.
The GI doc said I shouldn’t be fatigued and that if I read things like that
I might be having it for that reason. Since it’s not everyday or all the
time, I doubt it’s psychosomatic. My platelets have been high and my iron
low for at least ten years, so I have felt tired on and off for that length
of time anyway. This just seems a little more extreme.

Anyway, other than that I’m good emotionally and moving forward with
whatever is thrown at me!

MarLena,
I agree with JTB. You definately want to go with a hepatologist. In fact he is a specialist so I’m not sure why they would have two different options. And they will be familiar with PSC more so than any other doctor.

Mark

Thanks, guys. I appreciate all the help!

MarLena,
If you need a good liver doc at Piedmont, let me know.
Jeff

Hi Jeff. Do you want to just email me privately? I would love the name of a good doc at Piedmont. I’m scheduled to see someone at Emory (St. Joes) in January, but I’m not sure which doc or hospital is my better choice? Piedmont said they have to send my insurance in and get some kind of ok before they’ll even make my appointment.

Hi all! It’s been a while since I posted an update and I have a few questions, but I’ve spent an hour trying to figure out how to start a new topic for this post and either I’m just not with it today or somethings going on with this site?
I had my gallbladder removed in early December because I was having so much pain and nausea and the GI doc and Surgeon both said it was too risky to wait a month to see the hepatologist. Gallbladder was very bad, 25 stones and lots of thick sludge. They did a liver biopsy at the same time, which came back good. I recovered and felt good and had no pain for about a month, then the last two weeks, some mild pain in RUQ and lots of nausea. My mother-in-law keeps saying its my colon (this is her way of being positive…positively annoying is what it is! LOL) and I keep reminding her that my colonoscopy in Nov. was 100% good.
Seems like there is more pain and nausea everyday. Also, I developed blepharitis in my eyes in December (post gallbladder surgery, but unrelated). This is supposedly an old person problem, but can be because of auto immune disease.

I just had my first appointment with my hepatologist, Dr. Ford, on Monday and my GI’s office didn’t send all my records over like I’d requested so, he didn’t have either of my ERCP’s or my MRI w/contrast and he said I may or may not have PSC! I could have Secondary Sclerosing Cholangitis or nothing at all. He’s not ready to diagnose it,because he said it gets confused with other things all the time. I told him about the pain and nausea. He ran labs and he is going to watch my liver and he ordered an MRI with contrast in 6 months. My labs came in this morning and my liver enzymes are normal, but my white count is slightly elevated, 11.3. The pain and nausea seem to be getting worse yesterday and today. I have no fever.

So, now I don’t know what to think? If I do have PSC, could this be an indicator of another Cholangitis attack coming on? Even if my liver enzymes are within the normal range?

Sorry this is a novel, but I wanted to be sure I gave all the info leading up to my questions. My husband says if you ask me the time, I’ll tell you how to build a watch! :wink:

MarLena,
Sorry you are having such difficulty. The pain and nausea you are describing are certainly symptoms associated with PSC. I’m thinking you may need to have another ERCP done. If they find beading in your bile ducts and the other signs they should be able to certainly determine if you have PSC or not. Hopefully your hepatologist will stay on top of things although I’m more inclined to ask for quarterly appointments instead of six months if not for anything more than to get labs more frequently. In your last set of labs did you run your MELD score? Here’s the link for it in case you don’t have it.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

I’ll be thinking of you and trusting you will get a definite diagnosis soon.

Mark
PSC 2011 / Liver Transplant 2015

Mark,
I tried to use the MELD calculator, but my Bilirubin is 0.3mg/dL and every time I put it in, the calculator tells me it’s too low. I know it’s normal, because the results give a 0.3-1.0 as normal range. I know that if I have PSC, I am in the very early stage…stage 1.
Thank you for the other info, I don’t know if I should let my GI know what’s going on or wait and let the specialist know if I feel much worse?

Marlena, sorry your still having some troubles.

From what you mentioned, and from my experience, it does not seem like a cholangitis attack. When I had mine, the bilirubin had gotten so backlogged for so long, it got infected, which caused a fever of 101.4 and abdominal pain between my belly button and sternum. As I have standing orders to get to the ER if I have an unexplained fever of 101, that is where we went and where I received that diagnosis. I am not sure if there are other causes of a cholangitis attack.

What is a bit insidious about psc is that the troubles we go through may not be fully reflected on the meld score.

I would always let the liver specialist know what is going on. I would hope there is good communication between your GI and the liver specialist, but that can very widely.

Jeff

MarLena, Any updates on your health and further answers to whats going on?

Ive been praying for you!

Hi Mommymoses! Thanks for asking. I am finally feeling much better. I found a hepatologist who I think is wonderful. My gallbladder was removed in December, he agreed that it was bad and the stones could do more liver damage, so out it went! From then until March, I had URQ pain and nausea that my GI couldn’t treat or explain, except that he thought it was from the gallbladder removal. It got to the point that it was so bad I was in bed for 2 weeks. I went to another GI for a second opinion and a fresh set of eyes on things and she prescribed 3 meds and within an hour I was a whole new person! Needless to say, I permanently changed to the new GI doc!
I hit another bump with IBS after that, but she treated that as well and I’ve weaned off of all of those meds, except for the Urso, which she tells me I’ll be on for life. I’m feeling really good and I’ve learned a lot about this disease in the past 6 months through reading. I’m moving on with life and am still working and enjoying life. :blush:
I know there will be bumps here and there, but we’ll take that as it comes. My husband and kids are understanding better too, and that’s huge for a 15 and 20 year old to not be thinking mom’s dying anymore! I just wish they still pampered me like they did when I was sick! :wink:

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Oh, and thank you for the prayers. I cherish them!

Hi my name is Sarah and I was diagnosed with Psc today by my UC doctor. She is in communication with my Liver Specialist. They first noticed that my liver proteins were high on my blood tests. I had numerous scans - showed nothing, 3 years later my MRI shows my liver is enlarged and showing signs of PSC. I don’t have symptoms but the first thing we are doing is getting my UC in remission by using Remecade. After being told I have PSC, I was ok then I cried for hours, planned my funeral and wrote out all the things I want to do in the next 22 years. I’m really scared and I don’t really have much family for support as I live in the US and my parents are in the UK; atleast my doctors are super nice. My bilium is completely normal, everything about my body is more than healthy except my UC and these elevated levels in my liver. all this info online is very insensitive and not quite correct. I’m ok with a liver transplant, I’m just worried about a colon removal which they said they would do if they see any cancer. That scares me. I celebrate my 30th birthday in 2 months and I really thought I’d have more time to live my life. All I’ve done is chase after stupid boys and go on girls holidays and spend all my money. I’m really sad that I am thinking like this and I’m not sure how to get through each day. I wanted to ask if I’m really going to need a transplant in 10 years? Is that a hard fact? And also does this mean I will die young or could I still live until I’m old? I’m not able to have children until my UC is remission, I hope remission helps the PSC - does anyone have experience of their PSC reducing once their UC is in remission?

Please could anyone share how they get up every morning and find a reason to fight? I feel hopeless, and scared.

Thanks for all your stories, you are really amazing people. I hope I can harness the strength you guys have and live my life every day (I have a long bucket list).

Sarah,
Hi and welcome to our PSC forum. Everything you said we have all experienced similar feelings. I am here today though to tell you that the future is bright with hope for you. The more you educate yourself about PSC, the more you will see that there is much to still live for. Don’t let this diagnosis stop you from reaching for every dream you ever had. Just live each day to its fullest! Make sure you are a patient with a hepatologist associated with a transplant hospital, not your local GI. You need a specialist to manage your care moving forward. From what you are stating, you must be in the early stages of PSC. Be sure you are seeing your hepatologist every 6 months at least. They will most likely want to do an MRCP once a year in these early stages plus routine lab work from time to time. As the disease progresses your lab work, appointments, etc. will become more frequent.
Ask your specialist about prescribing Vancomycin. This medicine in many of us has slowed the progression of PSC. PSC at this stage is not a curable disease other than a liver transplant, but you may live many many years before that would ever be needed. It’s important I believe that you not hide this diagnosis in a box, but be very open with your family and close friends. You need a good support system in place to share this burden with you. I would strongly encourage you to take a family member or friend to each appointment. You will need an advocate to speak up for your needs especially when the disease progresses more.
We are here for you and will help you with any questions you may have. Do not be discouraged, but just live life and live it to the fullest!

Mark
PSC 2011 / Liver Transplant 2015

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Sarah,
I think it is common after being diagnosed with a disease like PSC for your emotions to run wild.

Do your research, as knowledge is power, but do not get overwhelmed. Reaching out to websites like this can help a lot.

When I was diagnosed, I read something that the average length of time between diagnosis and transplant was 12 years. I made it just over 4 years. Others on this board have been diagnosed for many years and have not received a transplant.

Know that PSC will test your stamina, your flexibility and your sense of humor. It really helped me to focus on the long term so that I do not bog down in daily stuff.

A lot of members on this site also have UC. I had it in 2006, resulting in a colectomy.

One of the best things about PSC is that it generally progresses slowly.

UCers and PSCers-can you help Sarah with your experiences?
Jeff