uveitis

Hello
So now I have a mild case of uveitis. I also been having some morning urgency and mild cramping etc (saw a little mucous but no blood). I had thought Remicade was working as I was increased to 7.5mg/kg at my last infusion almost 3 weeks ago. My doctor said that since I had uveitis it is a sign that we are not doing a good job at keeping the inflammation down. I am going to get another infusion in about 2 weeks and will get a Remicade level before that. I am so confused and just blown away that just when I think a med is working.. then its not?? Anyone ever have uveitis? I just had some redness but no pain- my eye doc said we caught it early. I know Remicade must be doing something as I've been off steroids for a few months. I started Remi in June--not sure what to expect at this point. He is also not 100% sure I have Crohns as he said he keeps going back and forth as nothing has been definite. What drug would I try next?

Countess, NCOT has been struggling with uveitis on & off for quite some time now. I believe her eye dr has her using steroid eye drops. She maintains her other symptoms are doing quite well in spite of things.

I hope things get better.

When flaring one of my extraintestinal symptoms was severe eye inflammation.

Try to Google 'uveitis gluten' and you will see dozens of links showing not only a relationship with uveitis and gluten intolerance for those with Celiac disease, but that uveitis also lessened for those who are merely gluten sensitive (like some IBDers like me), when they avoided eating gluten.

Along with eye drops it wouldn't hurt to try avoiding gluten. It might even help with your UC.

countess18 said...
I just had redness in the corner of my eye with barely any pain.

That sounds like what I had 10 years ago. Redness in the corner of my right eye. No pain but it often felt like there was something 'stuck' in the corner of my eye, like an eyelash or something. I never saw a doctor for it so I can't be sure it was early uveitis but I wouldn't be surprised if it was.

I didn't get my first serious attack until 2016. It wasn't hard to miss. Eye was completely red, the pain was excruciating and daylight made it even worse due to the photosensitivity. At first the steroid eye drops would knock the uveitis on the head for months at a time, but in the past year it's become increasingly chronic and now I can't get off the steroid eye drops for longer than a few days without it coming back. It can affect either the left or right eye, or both at the same time.

Contrary to what straydog said, I'm not doing great with other symptoms either. I'm not as ill as I was when I still had a whole colon, but I do think the Crohn's is flaring.

I wouldn't take the gluten stuff too seriously - there is nothing IaC can't link to gluten. If you have already tried a GF diet for months and it didn't help, then gluten is definitely not your problem.

Incidentally your doctor could be wrong about Remicade, at least in regards to the bowel inflammation. It's quite possible for Remicade to control the bowel inflammation but not the EI (extra-intestinal) inflammation and vice versa. Unfortunately the only way to find out for certain if the bowel inflammation is gone is with tests - symptoms alone just aren't a reliable enough guide.

countess18 said...
Do you ever feel like everyone is living around you and you are just existing?

I don't even feel like I exist. I'm like a ghost without a presence.

From my personal experience, FCP tests are wonderful at detecting moderate and severe inflammation BUT totally suck at detecting limited levels of mild inflammation.

Have you considered asking for an anti-spasmatic medication like Bentyl? Spasms are very painful...