Just wondering if many of you suffer from iritis. I believe it's connected to PSC. I've had it three times in the same eye, each time with a progressively longer recovery period (10 days, 1 mo, 2 mo).
Also, I wonder if any of you feel a type of pressure buildup and a queasy stomach when you get near your maximum time of physical exertion.
re: Iritis. My daughter who has PSC has not had iritis (thankfully). However, I have had it many times. It's autoimmune and often connected with crohn's (I have neither PSC nor crohn's, however, my daughter does). I hope the iritis is less painful each time you have a flare up.
As to the fatigue question, it might be good to define different types of fatigue. When I'm standing doing the dishes, I reach a point where I feel I can't go on much further. It's as if a pressure builds up and my body is saying I must sit down. In other activities, such as lawn mowing, I get a queasy feeling in my stomach that says, "you've done enough physical work. You could go on, but you'll pay for it later with a longer recovery time." In this instance, I don't feel I need to sit down. Standing in one spot is the most difficult and fatiguing.
One reason family members think I'm normal is because I can do difficult tasks. The problem is it takes a long time to recover enough to do the next difficult task.
Another type of fatigue is when I know I could easily sleep an hour right after dinner. The worst fatigue is from eating too much sugar.
I actually don't feel tired most of the time, but that's because I dictate my own schedule, and I don't overdo it. How do the rest of you experience fatigue?
mah437: that comment about cataracts reminds me why I don't want to get iritis again. Deena, it's not the pain that worries me. It's the inconvenience of the eye drops, concern about healing, and the reduction of activities that results. Thank you.
Ive had uveitis since January and at points I had to have a drop every 30 mins for week then tapered it down over time, but now the docs think that I might have to stay on pred ford forever (even if its only one or two drops a day), does this sound right? Also they think its somehow linked with UC, is this correct??
I know this is an old thread, but I just recently joined this site and this is one of the first issues I was curious about looking up. My PSC was Dx. 8 yrs ago and I had first episode of Iritis @1 year ago. Left eye was a bit irritated one day, but didn’t think much of it until I awoke the next morning and pretty much couldn’t see out of left eye. Initially I wasn’t too concerned. I had done yard work the previous day, lots of dust, so presumed I just had an unusual amount of sleep/gunk in my eye. Enjoyed my coffee, got up, washed my face, cleaned a bit of gunk out my eye, - and it made no difference. That’s when I became a bit alarmed. So many “floaters” it was like I was looking through a darkened snow globe. Also some eye pain, pressure, and light sensitivity.
Went to eye dr. ASAP. Dx.'d as Iritis/Uveitis, received Rx. for Prednisone Eye Drops. Left eye started clearing up within a couple of days, but then began having floaters in R.Eye. Took about a week to clear up completely noticed same Each eye took @ a week to clear.
Have had about 4 more episodes within the last year. I begin using the drops as soon as symptoms begin & fortunately that seems to correct it & prevent it from getting as bad as that first episode. The frequency of these recurrent episodes concerns me.
Sisyphyus,
It is concerning. But remember, just because something's happening now doesn't mean it always will. I haven't had any more iritis since the third bout that I described. Also in the past, I've had itchy spells but lately I'm rarely itchy at all despite the cirrhosis. I observe all my own rules about no spices, using lots of vegetable oil in my food, etc.. I have had my diagnosis of PSC since 1998.
Do you wear sunglasses outside whenever it's bright? This prevents many problems.
I was diagnosed with Psc in the 1980's, had UC since 1976, transplanted in 2000.
After TX, I began to suffer from uveitis. I have had many episodes. Extremely painful. Drs were afraid to even see me, because of transplant. Finally, I have a good doctor.
However, It has been up to me to learn how to treat the uveitis with Prednisone. I start with 40 mg for a week,and then taper down 5 mg each week down to my regular dose of 5 mg. I fid it is best to be very precise with the dosage and
careful not to skip. My rheumatology Dr has me taking 6 50 mg pills a day for the eye problem.
I to have had UC for 20+ years and was recently diagnosed with PSC. I have also had three rounds of uveitis all in the same eye in the last two years so I do believe there is a connection with all these diseases and the inflammation in the body.
It's Autoimmune. Our bodies don't like us. I'm not too thrilled with mine, either.
Hi Donald,
What triggers an episode of uveitis for you? I have found several possible triggers: sunlight (so I wear sunglasses) and having a cold can cause the problem. Also, I wonder about bending down to clean and dropping my head too low. This has caused an ear ache for me in the past.
I can't detect any trigger. I have had uveitis only since my 2 liver transplants in 2000. I had several attacks in the immediate
2-3 years following and intermittently since. I went 2+ years after my immunologist boosted my sulfasalazine up to 3000
mg/day, but I had 2 more attacks one year ago+/-, and none lately. My mild arthritis attacks also began after 2000, mainly wrists and feet, and some swollen fingers.
I've skated on thin ice for 40 years, but except for the transplants, and the yearly colonoscopy, I get along pretty close to normally.
Best wishes.