Condition definitely worsening, Apriso to blame?

today has been rough to say the least. hopefully tomorrow will be better since I really don't want to get sick during the infusion. i've eaten a cliff bar and two piece of string cheese all day, and even with just that i'm as sick as I was yesterday when i ate considerably more.

Hope you feel better soon! Good luck tomorrow.

Infusion started at 140, and I'm already bored to death. I'm trying not to stress, trying not to think about antibodies or anything for that matter but my brain just won't shut up. They put a darn sock around my arm and my favorite nurse is here but wasn't assigned to me. #infusionproblems

Made it through the infusion without having to run to the bathroom... Went home, had a snack and so far so good . If this was yesterday, pretty sure the action of eating something would trigger a bm. Obviously far too early to tell but I'm trying to be positive and think happy thoughts

while it's far too early to tell i really don't understand how Remicade can work so quickly... to go from such a poor health state to a rapid recovery, i just don't understand how it's possible. i know with my first infusion back in March i was having the worst flare in my 2 years of havign UC, losing over 30 pounds in a month while on 60mg of prednisone. Going 15-20+ times a day etc and right after the infusion i noticed huge differences. Remicade doesn't magically repair all the inflammation, so I guess I just don't understand how it's so effective.

i just hope it is again for me this time around. I'm also going to talk to my GI next week an an anti-bodies blood test either way.

fingers crossed, and thanks so much for all the well wishes. This forum has been amazing to me, and I hope to be able to pay it forward.

well i can't really tell if this infusion has helped or not, obviously have to give it a few more days to see...

prior to the infusion @ 1:15 I went 7 times in the morning, and from 4pm to 4am i went 3 times, i couldn't sleep last night :(

this morning i've gone 2 times thus far, still seeing some blood and no solid movements to speak of. going by previous experience it usually takes a few days to see some of those symptoms go away.

frequency has decreased slightly but i'm still definitely experiencing some discomfort, urgency etc. still seeing some blood and other 'stuff', but did notice my last BM was solid narrow formed and small movements. i guess that's a good sign but it was quite painful to pass. :(

bananagirl said...
I think you are driving yourself crazy, josh.

couldn't agree more. i want the infusion to work so badly that i'm over analyzing every little thing.

bananagirl said...
I know what you mean. that's how I feel about Imuran. I feel AWESOME on prednisone right now but as I taper, I just want Imuran to kick in so badly. if I could stay on prednisone forever and feel like this, I would in a heartbeat.

i'm stubborn, i refuse to go back on prednisone. but uceris doesn't seem to be cutting it fully but we'll see. ideally if i could use uceris as a maintenance drug i would try. history has shown i can't stay in remission with just remicade and mesalamines make the symptoms infinitely worse. so i don't know what i could do in terms of a maintenance drug

Red_34 said...
Did you have any premeds before the infusion? If so, what?

Btw, don't get discouraged if you don't see immediate improvements when starting Remi. You're just in the loading stage. It can take several infusions before you notice an improvement. I didn't actually hit a true remission until after I was on it for 9 months. I would yo-yo with symptoms. I've now been on it almost 2 years and I am still doing fantastic. I hope the same holds true for you!

i actually started remi back in march and within days the symptoms really improved rapidly. 3 days after and I was basically going twice a day with no blood/mucous etc and this was coming off a very major flare where UC had gone all the way up and into/through the transverse colon. my infusion in july didn't seem to help and i got very sick and into a flare. we pushed up this infusion to see how i'd do but my GI didn't want to up the dose past 5mg per kg.

i'm on uceris and tried apriso (only to go off of it because my flare went from ~7-10 to 18-20bm's a day).

i'm worried about antibodies so i will insist on testing for them if i don't see enough improvement by monday. i'm getting bloodwork done tomorrow, hopefully it reveals some good news as well.

Red_34 said...
Oh ok...I thought you just started the Remi. Did you have any infusions between March and July?

infusion 1: 3/25 then i had infusions 2 weeks later, then 6 weeks later then 8 weeks later... so i got through the loading phase and seemed alright up until the july infusion. some blips on the radar but definitely out of a flare and in much more manageable shape.

i was on prednisone during a good number of the infusions, as I tapered off.

Red_34 said...
Ah....I'm sorry if I missed your earlier postings if you posted about this (its been a crazy summer for me).

If the Remi fails or if you have built antibodies, have or will you try Humira?

i actually was put on humira first, and it didn't really help. i was on it for around 10 months when we ended decided to make the switch to remicade.

remicade was remarkable and am holding out hope it still can be. i suppose cimzia would be my next step