Early symptoms of PSC


oh bless you Bob, the flea infested dog comment made me laugh. You poor thing. I have been wrangling my husband into a back scratch for years. he is complicit in my 'flea' relief lol :)


Bob said:

Yes, I blamed itchiness on my legs on dry skin for years before I was diagnosed. I had a girlfriend compare me to her flea-infested dog back in the early 90's, because I kept her awake with itching. It's something that makes me wonder whether I had it even back then.

Mave said:

I get itchy on my back, but I have been blaming it on dry skin too, and it may well be that.

Mave,

When my husband's bile ducts start to "plug" up he definitely gets a bloated feeling and indigestion. That's actually one of the first signs we know he's plugging up, even before his blood work worsens, bilirubin goes up and he turns yellow. He's had 3 stents placed to open up his main bile duct-this last one actually plugged and had to be removed before the scheduled time.

He's had period itching-usually the front of his legs, but nothing that is terrible. Hope it stays that way. :)

Lisa

-Nomad sorry your bile ducts are in such bad shape. I had 5 ERCP's before transplant and generally they helped a lot for a while. The first two lasted several years, but the last 3 were done in the last year before transplant. My doctor refused to put in stents due to the fact they get so clogged up so soon by the PSC progression.

-Mave there are some excellent drugs that can be prescribed to get the itching pretty much under control. For me, the only thing that worked was Rifampin. I took 300 mg twice a day and my itching was pretty much 95-99% solved most of the time.

-If any of your MELD's are pretty high, I would recommend getting listed sooner than later. Thankfully I was able to work all the way up to the day I got my call and walked into the hospital for my transplant. I have heard of so many that were in and out of the hospital with terrible infections prior to transplant, and they will NOT transplant you if you have an infection. Plus it puts such a strain on your kidney's and other organs that it makes the recovery so much harder. if you can stay active, walking on the treadmill or other types of exercise a little every day that will help. My doctor's stressed to me to keep my core strength up. The more the disease advances you will start having muscle wasting and weight loss pretty bad. It's important to eat a high protein diet to try and keep your strength up, etc. The problem though with eating for me though was the worse i got the more nauseated I became thus I couldn't hardly stand the smell of food. I had trouble even going to the grocery store walking the aisles with my wife. Hopefully you guys are a long way off from being where I was but I thought it would give you something to consider as the disease progresses. There is some help now with MELD scores with the additional factor in the MELD calculation.

The best to you all.

Mark Wilson, Moderator

PSC 2011 / Liver Transplant 7-2015

Hi, I’m newly diagnosed, last week. A few months ago before I knew what was going on, and was so tired I could barely move, I switched to a whole foods, plant based diet. It didn’t make me feel any better at first, but after a while it seemed to help. There are no added oils in this diet, so its good for you regardless! It’s tough to stick with, especially when my husband still eats the good stuff. I cheat a little but it’s rare. Now with this diagnosis it helps to keep me on track.

As far as itching, I have two patches, one on my belly, and one at the top of my rib cage that are discolored because they itch so bad sometimes its maddening. But when I showed my hepatologist, he said they were not significant, so when people say itching, is it all over or localized?

The itching will manifest itself in different areas. Sometimes feet arms back and other times other places. The only thing that brought relief to me for four years was a medication called Rifampin. 300 mg twice a day. When it gets really unbearable ask your hep doctor about it. We’ve all figured out what helps the itching the most individually. Severe itching also is an indicator of high bilirubin levels and with PSC gives a good idea when it’s time for another ERCP procedure to clear the bile ducts.

Mark

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Hi.I am new in the group. My 8year old son. Have been just diagnosed with PSC and colitis. The only symptom he has IS the itching. The hepatologist told us that he is probably in stage one. He does not complain about nothing else. He plais soccer. The doc told us to live a normal kids live but I am concerned about to much exersise on the games.
Any comments?
Do yoy know other cases of child with PSC at that age.
Thanks

dcmang,
Hello and welcome to this PSC community. I’m sorry for your sons diagnosis but usually when children develop PSC early the disease progression moves usually quite slow. The itching he is having can be controlled in a variety of ways. There are medications such as Rifampin that will pretty much totally relieve the itching in some but I’m not sure at his age if that would be the best choice. Do your research on this site and you will find a variety of remedies for the itching. As far as his exercise, let him live his life to its fullest. As long as he has energy let him live a normal life like any other normal child would do. In fact the more exercise the better, for as the disease progresses exercise will be more and more important. The reality of it is that one day he will need a transplant and he needs to be in the best physical shape possible when that time comes hopefully way down the road. I would not bring a lot of attention to him about being overly protective of what he does. Let him just live life, be a child and deal with problems as they come about. When the itching gets really bad it’s an indication his bilirubin levels are way up. The hepatologist at some ;point will want to do an ERCP procedure on him where they go in endoscopically and clear his bile ducts of any strictures so that it will flow better. This is a temporary remedy and will have to be repeated a number of times while he has PSC. But at his age one ERCP hopefully will last a number of years.
Please feel free to ask any questions you may have as time goes forward. There are no dumb questions in this forum. We’ve all had to learn at some point about PSC. Treat him normal though, he will let you know when things are not right. And please stay under the care of a hepatologist, not just a PCP or GI doctor. The hepatologist will know when the right time comes for transplant listing, etc. down the road. Take care.

Mark
PSC 2011 / Liver Transplant 2015

Ok
Appreciate the info and will follow the guidance

Thanks