Hello... it's me

Hi All


Just joined and thought I'd say a quick hello. I was diagnosed with PSC around 2003 and UC around 2001. Reading around the discussions I feel like I've been one of the lucky ones in terms of my symptoms. My UC is well controlled with Pentasa and I've been on Urso for the PSC. My Liver function tests have always been a bit high. I've never suffered jaundice but have gone through phases of itching. I had some pain from my liver about a year ago and that seemed to go away by itself eventually. It seems to be back in the last month but very mild, almost a dull discomfort when I notice it's there.

I've always avoided the internet for research in the past for a couple of reasons; I'm lucky enough to live a pretty regular life, plus I don't want to worry myself with worst case scenarios.

Recently though my consultant has put me in for a liver biopsy... and that leads to research, perhaps unnecessary worry, a sense of your own mortality... all new stuff to me lol.

Has anyone in the UK had any experience of other drugs, clinical trials, vancomcyn etc? It's only something I've read about recently but understand it's not strictly a PSC drug.

What are the successful things people have done to look after themselves especially in times of not being asymptomatic? For me, permanently changing my breakfast to a fruit and veg smoothy (thankyou Nutribullet :) ) instead of cereal has very quickly helped with my UC. I'm planning on trialling an increase in amount of plant based meals to see the effect on PSC.


Thanks

J

Welcome, J!

Do you know why your doctor ordered a liver biopsy? Biopsies were more common back when you were first diagnosed but MRCP technology has advanced to the point where it has taken the place of biopsies and ERCPs for diagnostic and screening purposes. If they are looking to stage the disease, a fibroscan is a much less invasive approach. Do they suspect AIH overlap?

I'm not in the UK but have been treated with oral vancomycin for about 2.5 years. If you have any questions, I'd love to help. There are a few oral vanco UK PSC patients from various facebook groups. As I recall, they met a lot of resistance from their UK doctors and received treatment abroad.

Has your doctor been keeping track of fat soluble vitamins (ADEK) or ordered a bone density scan? This is a big deal with PSC patients and a lot of doctors seem to have missed the memo. A plant based diet (low fat) may be great for the UC and PSC but may exacerbate any fat absorption issues (you may need to supplement).

J, with plant-based foods when you have uc, the old standby saying is that if you can cut it with a fork, fine. But if not, it will likely be too hard for a uc patient to digest well. That is why I when I had uc, I would steam my veggies, or boil them. Smoothies are wonderful.

I am not sure a more plant-based approach will do much to psc but I am all for better nutrition I hope it helps, but psc affect different people differently, so experimentation can be tricky. It can be hard to tell, with psc a slowly progressing disease, the effect of any one approach, but reducing your fat and sodium intake would likely help a disgruntled liver.

Jeff

Hi, thanks for the replies.

I think AIH Overlap might have been mentioned. The problem is that I've got by until now by not thinking about this stuff too much, which means a lot of things the doctor has said went in one ear and out the other. "If I don't know about it... it's not happening and I don't have to think about"... a childish attitude but it lets me get on with my life.

I haven't had a recent DEXA scan. The last one was maybe 4 years ago as I had some bone thinning from all the Prednisolone I was on when first diagnosed with UC. How does a DEXA scan relate to PSC?

Not sure I'd ever go totally plant based. I'm a stubborn meat eater and can't imagine becoming totally vegetarian. My added fats tend to come from coconut oil.

Thanks for the replies, it's given me some more to go on and research.

J

I hear you about ignoring it. I was diagnosed in 2001 and ignored it until I got really sick in 2013. In retrospect I could have avoided a lot of issues like osteoporosis and ER visits if I had done my homework ahead of time.

Suspected AIH overlap is one of the few things that would warrant a biopsy (it is the only way to be sure). What is your AST/ALT in relation to your ALP? Positive for antibodies like ANA or SMA from a blood test?

Most dietary fat must be broken down by liver bile to be absorbed. As PSC progresses, the combination of bile duct inflammation and scar tissue slows down the flow of liver bile. Over time a larger fraction of dietary fat passes through the gut without being absorbed. This is a big deal for two reasons. First, fat is twice as calorie dense as carbs or proteins so a whole lot of calories are lost. Second, fat soluble vitamins can only be absorbed with absorbable dietary fat. It is not unusual for PSC patients to be chronically low in ADEK even with supplements. The workaround is something that you are already taking - short and medium chain fats that do not require liver bile to be absorbed. The best sources are coconut oil (~60% medium chain fats) and MCT oil (100%). These fats get absorbed very quickly so make sure you are taking them close in time with food/supplements rich in ADEK.

It wasn't until I was being listed for transplant that a doctor (my 5th hepatologist) bothered to check these levels. By then I already had osteoporosis (at 31). Don't be like me. If your doctor hasn't checked your vitamin levels, bug him to do it. Even if they are normal it wouldn't hurt to get another DEXA every so often just to be sure.

Hi JTB. To be honest, I have no idea what ast/alt alp ana sma are. But I'll find out. I have a blood test every couple of months or so, so hopefully that's done with the liver functions tests. I'll ask about the numbers and get informed. Biopsy is tomorrow. Thanks. J

Jfive,

Look at my recent post,

http://www.livingwithpsc.org/forum/topics/blood-test-interpretations

It has good definitions of all those initials in bloodwork.

Jeff

Hi all

I totally forgot to reply to this with the busyness over the holiday season.

The results from my biopsy came back negative for AIH overlap so that's some good news. I've just had a DEXA scan done so I'm waiting for the results of that so I can compare it to the the scan from a few years ago. I've got a follow up appointment with the Doc in March so I'll get all the details and a copy of my blood results then.


Hope everyone is doing well and staying positive :)

J

PS. Thanks for the link Jeff.