My son has facial swelling. Have any of you experienced that & if so should I be concerned? He slept for 13 hours today.
Thank you,
AJ
During a particularly bad cholangitis attack I experienced random swelling. One night my first two fingers and thumbs on both hands swelled considerably. The next night my throat began to swell when I ate food and a quick trip to the ER followed. It was determined that I did not have sepsis. The third night both of my feet swelled. After that third night the antibiotics kicked in and all of my symptoms went away.
I asked the ER doctors and a couple of hepatologists after the fact about the swelling and none of them had ever heard of this happening to PSC patients. Regardless, when the liver infection was treated, the random swelling stopped.
Thank you. His eyes are swollen & his forehead. He resembles a Neanderthal. Not nice I know but goodness. I’ve been Googling but I can find anything.
Come to think of it, during that cholangitis attack I had my upper lip swell up to comical proportions.
How is your son doing otherwise? Any other symptoms beyond the normal or any that are worse? How long has the swelling persisted?
I found the link below interesting:
http://www.hopkinsarthritis.org/physician-corner/rheumatology-rounds/round-17-facial-swelling/
Case 2 is a PSC/UC patient with face, hand, and throat swelling on different occasions.
Thank you so much for sharing this article! Case #2 is so similar to him. He has had the swollen lymph node in his neck for over a year. His Dr.'s aren’t concerned. It has grown but they still haven’t tested it. It’s tough because he hates aknowledging he has this disease. This article is so interesting in the fact that the majority of the problems this person encountered my son has also but when we have medical appointments the past issues seem irrelevant. I’m e- mailing his medical team. He’s had so many things in the past year he has landed on a lot of researches desks. I told him if he was trying to become famous I’d prefer he went about it in another way. Not gain game through medical science. 
All joking aside… I really, really appreciate you sharing this with me.
Thank you! Sending a great BIG hug!!!
AJ
Stephen he’s only on Ursodiol.
Hi AJ
Lip and face swelling has a number of different causes and may not necessarily related to PSC. Swelling of the abdomen is part of the PSC symptoms.It is absolutely necessary that you ask your son's physician whether diuretics (medications that improve urination and reduce swellings) will help his particular condition. I regularly take two different diuretics prescribed to relieve swelling of the abdomen and of the feet. I increase their use when the swelling re-appears, because the use of too much medication for swelling may lead to having a low blood platelet count. Only use diuretics on the advice of a physician. You might also consult a pharnacist about their use.
Often with PSC the healthy diurnal sleep pattern is gone. With PSC one mey feel fatigued in the daytime and feel the need to rest, yet at nighttime it may be difficult to fall asleep.
Adrian
Depends on if he is taking a medication that would cause facial swelling. I have problems with swelling in my face as well and it has been determined to be a secondary reaction to inflamation (PSC) in my body. My salvatory glads swell and I feel very ill when it happens and sleep for hours. I was put on three rounds of antibiotic recently and it finally settled down for now. Hopefully stays that way.