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Ulcerative Colitis and PSC Liver Disease

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Ulcerative Colitis
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Posted 7/22/2015 9:12 PM (GMT 0)
My son age 28 was diagnosed with PSC liver disease 8 yrs ago and we seem to have the PSC somewhat under control with meds-- urisodoil 6 tabs a day- BUT in the past year he has developed UC which is common in PSC patients- Just recently it has gotten way out of control to where he has no feeling of going to the bathroom and just stands up and it comes out- we have had blood tests and colonscopy's and the gastronologist says there really isn't anything else to try - we have tried uceris - asacol and florastar and several others including the injection of simpioni. None have worked for very long- he has changed his diet but he has always been a healthy eater to begin with so even that isn't working- Now they want him to try Remicade infusion- my question is has anyone out there has PSC and UC and has tried Remicade- any words of wisdom? The doctor says the infusion takes three hours- has anyone had this? Anything as a mom I should look for in side effects after the first dose?
How many of you still work with this condition? He is an aerospace engineer and is under some stress daily.
Any suggestions would also be appreciated.
Posted 7/23/2015 1:14 PM (GMT 0)
I would look into rectal suppositories like Canasa or mesalamine enemas or even steroid enemas as well as oral medication. For my last flare I took a short burst of prednisone to jump start me out of the flare. I also took enemas and continued my Lialda. I've never tried remicade, but I know it works well for some people. Read around on here for diet tips. Chiron just posted a great protocol.
Posted 7/23/2015 5:11 PM (GMT 0)
A Remicade infusion is a 2-3 hour process. You are given Tylenol and an antihistamine (claritin or benadryl) before the infusion, as premedications. The pre-medications make it a lot less likely you'll get an infusion reaction (such as a headache, increased body temperature or heart rate). The infusion of remicade is painless, other than a tiny needle prick when the nurse sets the IV. There is no sensation while getting remicade. It's a rather boring process, you sit and the nurse checks your temperature periodically, and adjusts the IV drip rate. Bringing entertainment is highly recommended (a good book, kindle, ipad, or something you like). They bandage you up with a bandaid and away you go.

As far as side effects go, they are statistically very small odds of them. I've been on remicade 2 years now and have yet to experience one.

I've been working for a software company for years, despite uc. Having a bathroom nearby, and work from home options are greatly helpful. Once your uc is in remission (that is an absence of uc symptoms), it is much easier to work. I'm in remission thanks to remicade, and I'm normal with no work restrictions.
Posted 7/23/2015 5:19 PM (GMT 0)
doesn't the benadryl make you sleepy and then you cannot drive after?
Posted 7/23/2015 5:21 PM (GMT 0)
I take claritin instead of benadryl. Yes, benadryl can make you sleepy.
Posted 7/23/2015 9:20 PM (GMT 0)
I had/have UC and PSC. I say "had/have" because I had my colon removed a few months ago due to UC, and had a liver transplant back in 2013 due to PSC. The PSC can come back, though, so unfortunately, I have to say I technically still have it.

Anyway, I tried Remicade after Asacol stopped working and Uceris didn't help. Remicade works for many people, but both of the first 2 loading doses made me worse. I ended up with c-diff in the midst of everything, too. So, it was complicated.

If the docs are recommending Remicade, I wouldn't be afraid to give it a try. I didn't really have any side effects per se. It just didn't work. I had Benedryl and a low of dose of steroid immediately before the Remicade was started. I was nice and sleepy from the Benedryl and slept through most of the infusion. I was able to drive myself home afterward.

I'm glad your son's PSC is keeping a low profile, and I hope he can get relief from his UC symptoms.
Posted 7/23/2015 9:26 PM (GMT 0)
Oh gosh! I am sorry- you sound like you have had a rough time on and off- Do you still work?

Whats a c-diff by the way?

Post Edited (c) : 7/24/2015 2:44:24 PM (GMT-6)

Posted 7/24/2015 1:26 AM (GMT 0)
K-del how long had you had PSC when you needed the liver transplant?? I was just diagnosed in March and still just don't know what to make of this diagnosis.
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