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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Flu shots & vaccines with PSC

Does anyone know if getting a flu shot or a vaccine can be detrimental when someone has PSC? Our doctor is recommending it. (Flu shot)

Definately get a flu shot for her annually. And then, “if” she ever gets listed for transplant they will want her to have at least the following. After transplant, no live vaccines can be received.

  • Pneumonia Vaccine - First and Booster shots
  • Shingles Vaccine
  • Hepatitis A & B - They can give that in one injection. And I believe you have to get one or two follow up boosters after that.

Mark

Hi Mark,
It’s Mollie, Alana’s mom. I just came from the lab and her BiliRubin went down to three and it was 6.5 two weeks ago. All looks good but when I did her MELD score it says 24! I am totally confused when all these labs show she’s in the normal range with this meld score is not working. I’m alarmed by this! Help!
Mollie

Mark,
Sorry about that text. I put in wrong creatinine level. The ratio and the actual score were different. So it is 11. Which is down from the MELD score two weeks ago of 14. Alkaline is some higher though…(328)
Mollie

Hi Mollie,
Sorry…I just saw your email, it’s been a busy day. I’m glad you got that MELD score cleared up. Glad her bilirubin is down more this week. That’s good. With it being 11 now, unless she starts having issues you should be good to go for a while yet. Try and focus now on some other things to get your mind off the disease so you will not be in a constant worry. You’ve got a long road ahead and you will need more energy later. Hopefully she has many years of symptom free living. Of course we know there are no guarantees but I pray for her especially that things will go well. You are a good mother and are doing all you can for her. Thanks for being there!
Take care. I’m battling some sort of lung infection I fear. I’ve got an appointment tomorrow with my ENT. Probably is my upper bronchial. One of the side effects of being on immune suppressants. I shook some hands last week at church as we had some out of town guests. I generally do not shake hands with folks to reduce the chance of infection but I fear I must have picked something up.

Mark

I’ll be praying for you and the lung infection. Unfortunately, we have so many contacts at church we shake hands with , not to mention it’s that time of year for illness! My girls always got bugs in October from school weather change etc. But your system is already compromised and fragile so I’m glad you are getting that checked out!
As for me, I will try to normalize my life as we have 11 children! Six are independent and married etc… and we have five girls at home with special needs so they need me too! But I’m always having to be Alana’s watchdog as she never complains! Working on getting a communication device thru the school which will be a necessity in the future!
God bless you! And will continue to pray for you too,
Mollie

Forgot to tell you we have adopted seven children in our lifetime!!
Mollie

I thought as much although my grandmother comes from a family of fifteen children. Great for you👌

Mark

Hi Mark,
Alana continues to look better and feel better each day. She sees the hepatologist in Cleveland in a couple weeks. I was wondering how do we know if she has small duct PSC versus Large duct? I was never told this.
Mollie

Mollie,
I’m glad she is doing better each day. That’s always encouraging.

Have any of the MRCP’s or ERCP’s indicated beading/fibrosis in the left and right intrahepatic or extrahepatic ducts? This would indicate large duct PSC.
Patients with cholestatic liver function tests and histological features of primary sclerosing cholangitis (PSC) but a normal cholangiogram are considered to have small duct PSC.

Hope this helps.

Mark

Hi Mollie,
A liver biopsy is always required to diagnose small duct PSC and this will only be carried out if mrcp scans appear normal.
Rick

Thank you Rick. I’m going to go thru her paperwork tonight and see what it says. When we were first diagnosed I did t understand the significance of the report so I need to read it again with the knowledge I’ve gained thru this site.
Thanks!
Mollie

Mark
Here is the report I have on Alana. What does this indicate to you?
And how do I send this to you personally? Husband here and we are trying to do this
Mollie

Alana’s report

Rick
It says: no frank intrahepatic or extrahepatic bile duct dilation is demonstrated. However, there is a slight irregularity of the central intrahepatic bile docs which demonstrate a beaded appearance. (Alana’s report)
Mollie

Alana"S summary report.

I’ll send you a private message with my personal email.

Mark

Just read over the report. It indicates the need of an ERCP procedure. They will go in and do the dilation of the ducts, hopefully NO stents, clean out the sludge, etc and she should see her numbers go down even more. This to me is pretty conclusive of large duct PSC from my experience. Nothing to get overly anxious over. She’s been feeling better so this will be scheduled as a matter of course. The biggest thing I could recommend about the ERCP is that you make sure this is being done by an advanced endoscopist tied with the transplant hospital that does these every day, not just any old GI. And if all goes well, stick with that one doctor each time to do these procedures. He or she will become very familiar with Alena’s ducts and will make sure it gets done right every time.

Hope you all have a wonderful weekend. I’ve been dealing with a lung infection these past few weeks but am on some strong antibiotic that seems to be making a dent in the situation. Oh the woes of a suppressed immune system, but that’s ok, I’ve got my new liver perculating along.

Mark

Mark… she had one on September 4 or 5. I thought that’s what this is? The report from that? Or maybe it’s from the other test. I’ll find out. But she did have the ERCP unless you are saying she needs another. She seems fine right now. At the time of this she was hospitalized at bilirubin 14!

Mollie,
This report was from her MRCP on September 4th. This was an MRI of the liver and other abdominal organs. If this is a new MRI since her last ERCP, yes she may need to have another ERCP at some point. Now if her bilirubin is down enough that they feel comfortable waiting a little longer than that may be the case. It’s not uncommon to have to do multiple ERCP’s close together.
Speak with her hepatologist and see what direction he wants to go next. He may want to give her a little rest before going through another ERCP. I hope this helps.

Mark