[karen (OP)]

My son was just diagnosed with primary sclerosing cholengitis (PSC).  Last year he was diagnosed with severe ulcerative colitis/crohns  he has underwent the biopsy on the liver and also has had the  remicaid treatments and did get worse. He is 27, diagnosedat 26.  Does any one know of any treatments besides the prednisone and 20 other pills he takes per day?   He was a very allergic child when younger and very short tempered. (maybe because he wasnt feeling well)  He was diagnosed with ebstein barr virus 9 yrs ago and I wonder if that caused all these problems.  I am in desperate help to get information that may help him.  A child is supposed to out live the parent and I feel this is going to be the other way around.  There is no help for a single male here in Virginia that is ill I feel that the state would rather him die than help him. He cant keep a job and lives on 400 a month with me helping pay for his meds.  I am getting to the end of my rope with the whole thing.  I have looked into the National Health Institute in MD for help  but they take you for one thing like colitis but you cant have liver disease.   please help if you have heard of any new treatments in this, I would love to have my son around  he is all I have   thanks   karen

[Ians Daddy]

He's in my prayers. I hope you get some answers.

[bezoar]

I read somewhere that Epstein Barr virus was suspected as one of the causes of multiple sclerosis.  With PSC, one of the theories is that it is caused by a virus or bacteria.  It seems to me very logical that the EBV could have set this chain of events into action.  Obviously, the Remicaid is not the treatment of choice.  At this point, the whole thing sounds more like an autoimmune reaction, and I'm not a doctor, but I wonder if one of the other "anti-rejection" type drugs might help.  Has anything else been tried besides the Remicaid?  Then too, you have to be careful with the dosages and what type of drug you use.  If it is metabolized through the liver, and the liver's not functioning properly, then he'll need much lower doses and to have the levels carefully monitored.  

Far as I see it, the PSC is his greatest problem, and I would put him on a transplant list as soon as allowed, because if the liver damage progresses, he will need the transplant.  I would look for a very progressive rheumatologist -- maybe even get on the internet and correspond with as many as possible, and see if someone doesn't have another idea to slow down his immune system.  

My other concern is about the allergies.  If he's very allergic as you say, then perhaps his entire body in general is being irritated and inflamed by some substance he's allergic to.  So then, consult the allergist for whatever else may be the problem besides the usual allergies.  Has he gotten worse or better with the cortisone?  Can you pinpoint any medication that was added to his regime after which he developed the PSC or an exacerbation of the Crohn's?  Look also to his foods and over the counter meds like herbs, vitamins, etc.  If necessary, keep a diary of his good and bad days, and even narrow it down to the time of day he started feeling worse.  If an allergy is the problem, a pattern should become apparent.

I'm pretty much out of ideas other than these.  Chris???

Bezoar

[karen (OP)]

Bezoar, I can tell by what I have read by your answers to other people you are a very intelligent person. My name is Karen  my son is Chris.   His meds consist of high doses of prednisone for inflamation, pentasa for bleeding in his stomach, paxil for his nerves and temperment, also a blood pressure and water pill, xyathiaprene (not sure how to spell)  Was on Cipro,  I dont know how many more.   When he had gotten the Ebstein Barr syndrome apx 9-10 yrs ago they said they could not do anything for it except bed rest.  He was told to take tylenol and another not sure if ibuprofin alternating every 2 hrs.  It was about 2 months after that that the big thing was tylenol damages the liver.   I couldnt believe it.  Were we hurting him more by following drs instructions?   He can never keep a job because he runs to the bathroom over 25 times a day.   It use to be quite a bit more if not double that. He had to get blood transfusions because his blood was so low I think it was a 7 and 6 you usually die.   He goes into the hospital when he gets really bad for what they call tune ups.   It is quite sad because you see that his friends dont want to be around, they are ignorant to this and think this is something contagious.  I truely feel so bad for him and would change my life with his in a second.  I try and read anything and everything about these diseases.   I guess the statistics of people  with colitis/crohns there is 3 in 100,000 people that will get primary sclerosing cholengitis and he was one of them.  Also it usually shows up in people around 40 yrs old.  I will never give up and do believe in miracles and cures happen all the time  hoping one will come around soon.  Thanks for responding     Karen

[bezoar]

I'm not one to give up either, and would absolutely never quit on my children.  To put your mind at rest, you did not damage his liver if you used the Tylenol as directed.  It can be very damaging to the liver if over used, which I assume you followed doctors direction and did so.  And, there is no treatment for Epstein Barr that I'm aware of.  There are some very new antiviral drugs, but I don't think there's one out for Epstein Barr yet, and surely not when you son was stricken.  I just always think of autoimmune syndromes when I see a body with multiple systems that are inflammed or stricken with rare diseases of unknown etiology.  My technique is always to read everything I can about the disease(s), then put it all together to a conclusion which just makes good common sense, then speak to a receptive physician about it.  If he can give me a good explanation why me theory is incorrect, then it's back to the drawing board.  If not, then I like to make him a partner in curing or alleviating the problem.  If I hear of any dynamite specialists in his area, I'll be sure to let you know.
Don't stop looking for answers.  There's new research going on all the time, and there are other medications out there as well.  The first thing I would do is to ask the docs to take a look at all his meds, and see if they can't substitute meds, whenever possible, that are the least stressful to his liver.  A pharmacist could give you guidance on that so you have some ideas before you speak to the doc.  I know there must be some good medical centers in Virginia or nearby neighboring states.  Don't rely on one opinion, or anyone who tells you there's nothing more that can be done.  You want a doc who is a creative thinker, and they're out there.  A rare breed, but they do exist.
Meanwhile, as I have often said, the ultimate Chief of Staff is God, and I will keep you and your son in my prayers.  I am so sorry you are having to go through this.  I know, as a mother, it would devastate me to see my child suffer like that. I will keep my ears open for any leads.

Bezoar

[bezoar]

Hi Karen,
Had time to hit the net for a little research today.  Check out http://www.annals.org/cgi/content/summary/131/12/943.  It is one of many articles I found that, as I suspected, is a study of the use of immunosuppressants, other than Remicaid, for PSC.  Point is, there are other therapies out there that need to be explored.  I typed in "primary sclerosing cholangitis + immunosuppressants" and came up with a bunch of articles.  If I were you, I would go about it this way.  Find the name of one of the docs and his location, put in a call to him, discuss your son's case, then if he's too far away, get a recommendation from him of someone close to home that will try other immunosuppressant therapies on your son.  If close enough, you might want to consider making an initial visit for an assessment by your doc of choice, then with follow up and guidance from the original doc to a local doc.  The doctors know one another from various conferences, so he/she will probably know someone you can work with in your area.  The immunosuppressants might also help get some relief from the Crohn's as well.  Do explore the allergies as well, because that might have been the trigger to some of this mess.  Good luck.

Bezoar

[bezoar]

Karen,
Have a couple of leads for you:
Carl L. Berg, MD
Director of Hepatology
Medical Director of liver Transplantation
University of Virginia Health System
ph 804-924-0491

Velimir A. C. Luketic MD
Professor
Medical College of Virginia Commonwealth University
Hepatology Section
Division of Gastroenterology
ph 804-828-4060

The doctor I spoke to recommended these two.  He says drugs used to treat are: prednisone, azathioprine, budesonide, methotrexate, cyclosporine, pentoxifylline, and antibiotics.  Ursodioxycholic acis (UDCA) improves the symptoms and biochemical abnormalities.  Also important to supplement the fat soluble vitamins (A,D,E,K)

He's never heard of the condition being precipitated by EBV, however, it is an immunologically medicated damage with a high prevalence of p-ANAC (perinuclear antineutrophil cytoplasmic antibodies), which you might remember high levels of that in his blood work.  If all the stoppers havent't been pulled out, and every avenue explored, I'd keep plugging away.  Hope this helps.

Bezoar

[RD]

Systemic vasculitis could explain the colitis, cholangitis and bad-temper (emotional-incontinence from cerebral vasculitis).

http://www.arc.org.uk/arthinfo/patpubs/6047/6047.asp

[thingsventured]

Karen,

I have Colitis and PSC as well, I was diagnosed with colitis at 21-22 and PSC at about 34-35.  It is really difficult to deal with.  Please look up Dr. Berkson, a doctor in NM.  you can search under Berkson, liver, on google.  He is the only Doctor who has given me hope and I have just begun to follow his treatments.  Your son probably needs a lot of probiotics.  I take 4 packets of VSL#3 every day and it helps, in fact, I was doing fairly well until the PSC hit and threw everything out of whack.  I had my entire colon removed but continued to have pouchitis after that.  Anyhow, the road to health for this is long and expensive and I do not have much in the way of financial security either, every penny goes to trying to stay alive.  I wish you the best, and may God guide you and heal your son.

Hunter