36yr old professional, sporty male
Diagnosed with autoimmune UC in 2005 – Tried pretty much everything over the years. Apart from few bad years, my UC is more of an annoyance (planning trips around loos, avoiding dinner parties) than something that rules my life.
Some more about me:
Anything to do with sports (playing, not slobing in front of the TV ;)
None – Boom!
Infliximab/Remicade Double Dose
Finally, after having this UC for 8 yrs now, i’m symptom free. Over time, I’ve tried all sorts, diets, aloe vera, VSL3, pretty much everything you read about and nothing really works. I’ve been in hospital 3 times and had a couple of years where it has been quite hard in that knowing the location of ever loo has ruled my world :). The trickiest part is that I’m in the military and can’t tell anyone so hiding it can become a comedy at times, especially with some of the things I’ve had to do to cover up symptoms and stories I’ve made up to get out of situations (fast!). Me and UC have never gotten on well and i refuse to let it ruin my life or make me take a back seat.
I have a good GI who has tried me on all sorts of meds and the combination above has kept me with minimal symptoms over the years (with the exception of a couple of 6 month periods where the flares have been bad). I’ve come to accept that even when ‘well’ I’ll always have some blood, pain or the occasional short notice poop.
Getting to the point – A month or so ago, my GI suggested a one off double dose of Infliximab, and as usual, i’m willing to try anything to beat this. Since then, i’ve had an on & off cold that i cant shake due to the immune system hit (and the fact i have a baby in nursery), but, and this is a big but….. I am completely symptom free for the first time in 6 yrs. One poop per day, same time each morning, no blood or mucus, that’s it. I’m eating what i like and having a few beers too!
If you’re on Infliximab and its just about holding things at bay but not quite, i suggest you ask your doc about a double dose.
Now off for a run (without taking a packet of tissues!!!) – I am so excited in a way that only a UC’er could understand! :)
written by Matt
submitted in the colitis venting area
…Not sure why i’m sharing all this. I guess, in a strange way, its nice to know you’re not the only one….
Glad to hear you’re doing so well on remicade! It’s done wonders for me and I’m always so happy to hear it help others. I’ve been on it 9 years and have been symptom free for almost all of it! It seems like it only really works though for people with autoimmune as the root cause (my UC was triggered by another autoimmune). Make sure to put on sunscreen on your runs! Remicade makes you more sensitive to sunlight.
Keep up the updates!
Congratulations. Sounds great. I am glad to hear of success in your fight versus UC. I am relatively new to this in comparison. I have seen reference to what you indicate “autoimmune UC” and I am confused. I understood UC to be an autoimmune in itself. Is there any other type of UC? I see Angela says hers was triggered by another autoimmune. I guess my confusing is what other types of UC are there? If there are different types of UC how did your doctor determine it was this type of UC versus some other type of UC. Also for Angela, how did your doctor determine that one “triggered” the other? I am trying to understand my own situation.
I have Type 1 Autoimmune Hepatitis which always presents with a secondary autoimmune condition like UC, graves disease, sjogren’s syndrome, etc. They found the hepatitis first with blood work by checking for antinuclear antibodies and anti smooth muscle antibodies (had extremely high amounts of both), diagnosed with pancolitis (by colonoscopy) within a week of that diagnosis because not all my symptoms were explained by my liver damage. They believe that the AH is the trigger for the secondary autoimmune diseases because there’s a definitive immune system malfunction that they can test for.
My dr tried me on a double dose & I had a horrible reaction. I had to go back to my original dose & have to receive my infusions in slow mode. It takes about 4 1/2 hours now. I’m in remission & I thank remicade & nasty prednisone for getting me there. So glad the double dose got you into remission!
Hi Matt! Oh my gosh I could not imagine being in the military with this disease and hiding the disease at that!! Have you ever had a flare while deployed or anything? That would be awful! Well I have been on remicade since september 2012 and I have been in remission since, I never had a double dose but have had 6 infusion s total so far. So are they just doing a double dose your first infusion and then going to a normal dose after that or do you do double doses every 8 weeks? Well either way I’m so glad you are feeling better, nothing better than coming on this site and seeing people who were once suffering that are now in remission :)
This is awesome news, man! I’m also in the military and just had my first infusion of Remicade two days ago and I went from going about 15 times a day to only 3 times the next day after that first infusion! I feel like I’m getting my life back. I’m trying to remain reserved toward the medicine because I’ve heard of it working and then not working for some reason, but–like you said–being symptom-free like this for us UCers is a BIG DEAL! I’m really excited for you and hope things keep looking up :)