What is beading? I thought I read bleeding.
Beading in the liver. Think of it as a strand of different beads on a necklace. I have a lot of that in my liver. My doctor showed me scans of my liver. It is full of these. Why my bile ducts are not functioning properly. PSC.
That was done through a regular CT SCAN? My test was ordered specifically for the liver but it may have been a regular sccan.
Could be. I have had too many scans in the past 2 years. MRI, CT and others. I can't remember them all.
oh I C. I'm interested in thie OV treatment but not holding my breath.
I think I'm being a wishful thinker.
Will say more tomorrow.
Also, I posted another thread with a question about the enzymes, since i just learned about what they mean today. Please reply to it if you guys can
Wow... just reading through some of these bring back memories of how I felt after my diagnosis June 1st 2012.. Up till that point I can say I was asymptomatic .... What sent me to the emergency room that over the past 6 months prior to my diagnosis , I had trouble eating some foods, I was losing weight , however I was still able to go to the gym.. At one point I did start getting fever and chills... but that was like 5 months prior to my diagnosis.. I also had my gallbladder removed 8 months prior to my diagnosis.. So naturally I felt like my complications w/ eating and digestion I attributed it to my body adjusting to not having a gallbladder anymore.
Well on May 31st I went to the ER because I started to jaundice, also I was itching at time off an on.. along with I was steady losing weight.. I had blood work done found out my levels were elevated my billirubin was very high I believe it was at 25 or 27 at that point, I was then admitted into the hospital..So I was schedule to have an ERCP the next day.. I had that on June 1st which was the day I got my diagnosis for PSC . I must say I was relieved to know what the problem was, but didn't know this condition was rare.... I had a liver biopsy schedule 2 weeks later to confirm the diagnosis.... when the results came back from the biopsy , my Gastro Dr. told me it looks like we caught this early, however you may have been showing small signs of PSC for the past 15 years, just didn't know it. I also was told I was anemic, which explains why I was cold all the time, also I had a Vitamin D deficiency. 2 weeks after my biopsy I had a colonoscapy done to see if I also had UC... which I got that diagnosis after the colonoscapy. My Gastro told me looks like I had a mild case of UC. I was then sent to a liver specialist to be evaluated to see if I needed a liver transplant ... Well I had 2 MRI's within 6 month period which after the 2nd one my liver specialist told me my liver was fine, that the problem was in my bile ducts he then sent me back to my Gastro for another ERCP which was done 3 months after my last MRI which would have been 10 months to my diagnosis date & last ERCP. After that ERCP my gastro saw no difference in my bile ducts than it was back 6/1/2012...So I was just to continue taking the Urso & watching my diet..
All in all my journey was scary at first because this condition is SO SO SO different from person to person.. I was fatigued all the time, lost weight.. but I never lost my appetite nor did I ever throw up ... In fact I was hungry all the time....and I ate all the time whatever I wanted because I was obsessed with gaining my weight back , which I did but also created an cholesterol issue.. IE read my other post "PSC 1 year later" .. Today I feel good, I am training very well in the gym, I am watching my diet a lot better.. I don't itch nearly at all , but do have some at times but nothing like it use too. I hope for a cure for this condition.. however I am strong in my faith, and I do meditation, I feel that this is going back into remission or asymptomatic state. I will also pray for everyone on this site that things get better for them too as well..
think good thought... remember MIND OVER MATTER.... that what really matters... let your thoughts be your guide.
Crixus
I don't have IBD
Thanks for this comment Cactusgirl! I've been attempting to treat my PSC for the last 1.5 years by fixing my "leaky gut". I've had some good results but still have slightly elevated liver enzymes. Have you been doing anything in particular?
Cactusgirl said:
With regard to how people get this -- there are several theories. There is probably some genetic predisposition that is triggered by some event such as long term antibiotic use or exposure. The theory I am focused on is the "leaky gut" theory. An imbalance in the gut microflora can lead to inflammation of the epithelial cells of the colon that will then allow bacteria to escape into the hepatic system. So my query is if this could be a cause, can rebalancing the gut microflora be part of a cure. Of course researchers must first determine if the microflora is imbalanced and then exactly which bacteria. There will hopefully be a clinical study on this soon.
I am involved in a grant application with 5 institutions to study the gut microflora of PSC patients. I am meeting with the president of a pharmaceutical co. in a few weeks to discuss another study.
What have you done to "fix your leaky gut?"
I had my labs last week, and have an MRCP on Dec 3rd. I know something is going on just not sure what yet. My GGTs were up to a 750, Alk Phos 536, ALT 99 and AST 120, Bilirubin , Total is .08 and direct is .35 Cholesterol was up too, 254, never been a problem or even out of normal since 4yrs ago when I had a blockage in my pancreas.
I had pancreatitis and that led to the Whipple procedure because they found malignant cells in my pancreatic duct). I was blessed they didnāt find cancer cells anywhere else and lucky they found it or prob wouldnāt be here today. 6 months later, still wasnāt feeling up to par, so more labs and that started my next journeyā¦liver. After a couple weeks and many tests including a liver biopsy, they said PBC. My lab numbers were all over the place and not consistent, so after 3 more MRCPs since and my last MRCP CD with all 735 pix and labs went before the conference board at the Univ of Chicago and 2 days after Christmas last year gave me the new diagnosis of PBC. In April, Dr took me off all meds-decided they were not helping or benefitting me. They are hesitant to do stints because I have scar tissue from the previous surgery. Donāt want to go in unless very necessary because it will cause bigger problems at transplant time. Sooooo I wait I guess.
Most of what I have done to fix my leaky gut is dietary changes and also supplements. I do my best to avoid gluten, dairy and processed foods. Supplements that I take include but are limited to curcumin, milk thistle, alpha lipoic acid, fish oil and a multi-vitamin. I do other practices like meditation and yoga to help with stress levels as well as other things.
I'd be interested in hearing updates on your grant application as they come.
Cactusgirl said:
I am involved in a grant application with 5 institutions to study the gut microflora of PSC patients. I am meeting with the president of a pharmaceutical co. in a few weeks to discuss another study.
What have you done to "fix your leaky gut?"
All good supplements. I will keep all posted because if our grant is successful we will need participants.
Hi Lori, so what prompted you to get blood work? Pancreatitis? I'm sorry you had to go through that. I just read about what that is. Sounds awful.
Sometimes I wonder if I got it and never knew because I have upper abdominal pain when i get tense, but that just may be stress. I do'nt know....how did they find the blockage? A scan?
and what medication did they tell you to stop taking?
And how are you coping with everything?
Lori said:
I had my labs last week, and have an MRCP on Dec 3rd. I know something is going on just not sure what yet. My GGTs were up to a 750, Alk Phos 536, ALT 99 and AST 120, Bilirubin , Total is .08 and direct is .35 Cholesterol was up too, 254, never been a problem or even out of normal since 4yrs ago when I had a blockage in my pancreas.
I had pancreatitis and that led to the Whipple procedure because they found malignant cells in my pancreatic duct). I was blessed they didn't find cancer cells anywhere else and lucky they found it or prob wouldn't be here today. 6 months later, still wasn't feeling up to par, so more labs and that started my next journey....liver. After a couple weeks and many tests including a liver biopsy, they said PBC. My lab numbers were all over the place and not consistent, so after 3 more MRCPs since and my last MRCP CD with all 735 pix and labs went before the conference board at the Univ of Chicago and 2 days after Christmas last year gave me the new diagnosis of PBC. In April, Dr took me off all meds-decided they were not helping or benefitting me. They are hesitant to do stints because I have scar tissue from the previous surgery. Don't want to go in unless very necessary because it will cause bigger problems at transplant time. Sooooo I wait I guess.
Amen!
Thank you MEM. Reading what you said gave me hope.
Eliza
MEM said
John,
Do NOT think like that. PSC is only conclusively diagnosed via a liver biopsy. PSC is a crappy disease, but it is not a death sentence!
I was diagnosed in 2000 at age 39. Although I had symptoms for years, I just really got sick over the past year. This thing is different for everyone. But by the generosity of a family who loved their daughter, I received a liver in May. Things are going great and I love every day of life. You should do the same. Medicines, research, and transplantation are improving all the time. Learn all you can about this, speak to others and live your life as best you can. Live more, love more and don't let little things bother you. Lose the negative attitude, you can control that. Don't drink alcohol or do things harmful to your liver. Stay healthy as possible apart from your liver.
Be "A LIVER!" :-)
Mike from Kentucky.
19 years ago I was donating plasma regularly. Iād donated for years, without any problems. Then one day they surprised me by informing me that my liver enzymes were too elevated, and I would not be permitted to donate. I was working as an EMT at the time, so our first concern was that Iād contracted hepatitis B or C from a blood exposure. Tests ruled that out, so I ended up with a diagnosis of auto-immune hepatitis. That was my diagnosis for a year or so, but then they changed it to PSC, based on a small stricture seen on the bile duct, following my ERCP.
I also suffered from severe ulcerative colitis for about seven years. They misdiagnosed me with Crohnās Disease, and I was having bloody diarrhea, multiple times per day. No medicine seemed to really help much (except high doses of prednisone). It wasnāt easy, but I somehow managed to continue working as an EMT, and even completed paramedic school. Thankfully, the UC went into a full remission, and I havenāt had any troubles for almost a decade now. I do take one over-the-counter Imodium every dayā¦ mostly for peace of mind.
As for the PSC, I remain symptom-free even now, about 18 years later. My labs are extremely elevated, but for now Iām doing great. I lead a very active lifestyle, including SCUBA and skydiving, working full-time, and even did MMA and competitive jiu-jitsu for awhile.
Missourimedic,
I had been donating plasma for probably 5-6 years just prior to my PSC diagnosis as well. I was donating twice a week most weeks. Iām sure itās just a coincidence but that is really something to think about. Do you know what your most recent MELD score is?
Mark
I had been giving plasma twice a week for years. Not sure if itās a coincidence or not, but interesting food-for-thought. I just wonder if the body might not mistake the low plasma levels for some sort of disease process, and switch into an immune reaction of some sort. I have rosacea and UC, so there definitely seems to be some sort of autoimmune process at play. Of course Iām no doctorā¦ but it does seem as if the body could have somehow been fooled into an autoimmune mode. I also received some sort of rabies vaccination as part of a clinical trial at the plasma center. (?)
Honestly though, here is the most striking feature of mine which my doctor completely dismissed as being important, yet which Iāve always felt HAD to be connected:
Full disclosure: So I had been dating a girl who was diagnosed with an STD, known as vaginal trichomoniasis. Itās a relatively common and relatively harmless (supposedly) parasite which for girls cause symptoms similar to a yeast infection. For guys, itās usually self-limiting and harmless. The doctor prescribed us both flagyl though, to treat it. So up until that point, Iād been absolutely, 100% healthy. I started taking the flagyl, and a day later experienced severe vomiting. It was the worst vomiting Iāve ever had. Every twenty minutes, I vomited. You could set a watch by it. This went on for THREE DAYS. On about the second day, I also started having severe diarrhea. That had never been a problem for me before, but this proved to be the start of my disease. I ended up in the hospital. The vomiting stopped after a few days, but the diarrhea went on for years and eventually earned me a diagnosis of Crohnās disease (which was later downgraded to ulcerative colitis.)
It was a couple of weeks after the vomiting episode that I returned to the plasma center to donate, and for the first time in ten years of donating, I was rejected due to high liver enzymes.
So my doctor thinks that all of this is unrelated and just coincidence, but I find that hard to believe. I suspect that the flagyl triggered everything, or perhaps the parasitic infection did. The plasma is an interesting thought, though.
Oh, and Iām sorryā¦ I have no idea what my MELD score is. My doctor has never used the term with me or discussed it with me. I didnāt even know what it was until I came here.
Quite honestly, Iāve barely even gone to my doctor. In the beginning, he wanted to take out my colon and my gallbladder. He also gave me a raging case of pancreatitis after performing my second ERCP, which landed me in the hospital for a week. He also ordered a liver biopsy which went bad, and ended up putting me in the hospital. Frankly, I just donāt trust him.
Iāve been completely asymptomatic for a decade now, so I rarely go back. I just go every couple of years for an MRI or a colonoscopy, but he was so aggressive in trying to convince me to have a colectomy (in the absence of any symptomsā¦ this was even after my remission) that I really just donāt trust him.
I realize that pancreatitis could happen to anyone following an ERCP, but there was more to the story. For example, he was sending me on a three hour drive to St. Louis to simply give blood specimens.
It sounds to me like you need a new doctor my friend. Is he just an ordinary GI or is he a hepatologist? Thereās a VERY big difference in the two. Although all hepatologistās are GIās all GIās arenāt Hepās. I would encourage you to get labs at least every 6 months just to keep a track on your liver enzymes. And thatās ridiculous having you drive 3 hours just for labs. In this electronic age you should be able to get that done local and the results sent to your doctor. Once you do get your labs, hereās a link to check your MELD score. It will give you an idea of the progression of your PSC. I would encourage you once it gets over 12-15 to think about getting listed on the transplant list. I was listed in January 2015 with a MELD of 12, it jumped to 19 in April and by mid-July it has jumped to 36. I was transplanted 2 days later. Things can turn for the worse real quick. I do hope you stay asymptomatic for many years to come but you need a good hepatologist who will be there for you when the time comes. Take care and hereās that MELD score calculator link.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Mark
He is an ordinary GI doctor. In the beginning, they sent me to St.Louis to see a hepatologist, but like I said, itās a three-hour drive, so I havenāt been going. To be honest, itās been about 18 or 19 years since Iāve gone to a hepatologist. 
So I used your calculator link to find my MELD scores. I donāt have an INR on my latest labs, but I entered a ānormalā score, based on the fact that I seem to clot fairly well and Iām not taking any blood-thinners. All of the other labs were on my latest panel.
Based on this, my MELD is currently 7.