Remicade update... I had forgotten what it was like to feel normal!!

Hi guys... Been in a HORRIFIC flare for 16 months. My various treatments listed offered little to no relief during this time, but I am so excited to say that after my first Remicade infusion on Tuesday I am feeling great! It seems like everyday my UC symptoms are less, and I am just over all FEELING BETTER! After being so sick for so long, I guess you just adapt and it becomes the new normal. I honestly had forgotten what it was like to just feel good... to have the absence of sickness. Had a solid, formed bm this morning (first trip to the bathroom in over 24 hours), NO BLOOD or any other UC like accompaniments. NO SHARTING since the infusion! Whoop whoop! God bless Remicade!

The only concern I have is a minor one. My hair seems to be coming out more than usual over the past couple of days. Not sure if it has anything at all to do with the Remi or not. If it does, at this point, I'll rock the "Sinead O'Connor' look as long as I keep feeling good.

This is so great, glad to hear it's working for you.

Interesting thing about the hair... I kept my hair through a pretty nasty flare and didn't start to lose it until I was feeling better. This is actually a pretty common pattern -- hair is one of the LAST things to go in a malnutrition situation, so sometimes you won't actually have hair loss until you're starting to get better. In any case glad you're keeping it in perspective.

Remicade, prednisone, 6MP - most of the drugs commonly used to treat UC can cause hair loss or thinning. I used to have super thick long hair, now it's awful. Last year I actually had it cut off super short because the stylist said it was too thin and damaged to do anything else. Good news is they say as I recover, my old hair should come back. Healthy body = healthy hair!

My hair has started to shed more than usual since I started 6MP, but since I hit symptomatic remission it's been improving down some. Like Liz said, it might be malnourishment instead of the Remi. Either way, I'm with you--I don't mind shedding more if it means feeling great.

Mainly, I wanted to say YES YES YES about what you described about flaring becoming a new normal. I complained about that to my partner a lot--I had become used to being too tired to get out of bed, having horrific cramping and bloody loose stools, not having an appetite, not being able to focus on anything, and never knowing if I had gas or if I was about to shart ...

And now it's like ... I don't have to worry about where the bathroom is. I don't have to police my dietary intake. I can wake up, go to work, and focus. I've had to GET USED to being healthy again; it's so strange!

So glad to hear that you're improving so much on Remi already. That's a GREAT sign! I'm doing great on Remi and 6MP (hydrocortisone enemas were the last push I needed, but I'm not on them right now), but after each initial improvement RIGHT after each infusion, I wouldn't improve. The enemas got me to improve all the way, which is good. What I'm saying is that you keep improving every day, which is a super good sign.

Try flaring off and on for 21 years and simmering in between! Remi has been a life saver for me! I'm in a glorious remission thanks to this med. I hope it continues to work well for you :)

It's been little over a year so far.