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Just starting Remicade

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Ulcerative Colitis
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Posted 1/6/2012 4:11 AM (GMT 0)
I have been going through a flare for about the last 12-16 months. I just received my first Remicade treatment today (1-5-11). I was so incredibly nervous about the treatment before today, but I am now a true believer in this med. I was having about 10-15 bm a day, but since about 2 pm I have not had a bm. I am amazed that this med has started working so quickly. Please let me know what to expect in the future.
Thanks.
Posted 1/6/2012 4:37 AM (GMT 0)
I just started Remicade two weeks ago too!
I'm glad you've seen such immidate results. Best of luck to you.

There doesn't seem to be too many of us on Remi around here. I'm hoping it's because everyone is healed and don't come to the forum anymore :)
Posted 1/6/2012 5:07 AM (GMT 0)
Have you seen Positive results as well? I was told to not expect any major changes for about 4-8 weeks.

Thanks

-jb
Posted 1/6/2012 7:19 PM (GMT 0)
The only improvement I had seen was no more blood. However, this lasted for about a week and now it's back again :(. I have also seen less frequency of bm's, but still have the dreaded mucous (which indicates inflammation)

The rheumatologist who is administering the Remicade said I should start seeing results after this second infusion. I'm trying not to pressure myself, but have set myself a goal of three months to see results. My colon was so far gone, that I need to remember that first my antibodies will stop attacking it, but then it needs to heal itself. I'm sure this will take time.

Have you seen any improvement?
Posted 1/6/2012 9:04 PM (GMT 0)
It has only been about 24 hours since my first infusion, so I am very cautious about saying that there is an improvement, but I have had about 4 bm today as opposed to my normal 10 by now. Also I was able to sleep through the night last night which hasn't happened in about 6 months. I am very happy with how my body has responded thus far. If this is me not showing any response to the meds, I can't wait until I start to "improve". Lol
Posted 1/11/2012 1:05 AM (GMT 0)
So, five days after my first treatment and bm's have been reduced dramatically. I was at about 15-20 bm/day now I am running at about 3-5. This drug has been a godsend for me and I hope that I continue to respond to treatment. It is still too early to tell, but I think this is the ticket...
Posted 1/11/2012 1:02 PM (GMT 0)
That's awesome to hear! I'm glad you are doing better. I too did fairly well after my first infusion. I had a lot of gut pings and pains for the first 72 hours and then poof! No more pain and no more D.

A couple of weeks ago, I had my 4th infusion but I'm starting to feel like a junky! Meaning, I go in every 8 weeks for my infusions and at 6 weeks I can feel the ole Uc creeping back so I get antsy to get my next infusion. Finally after all these years of dealing with this, I have hope. This was my last ditch effort to save my colon and so far it seems to be working.

I hope Remi continues to work well for you! :)
Posted 1/11/2012 8:55 PM (GMT 0)
I have Crohn's/UC and have had my second Remicade treatment and have noticed no difference at all

I'm still hoping that I will notice some kind of change for positive with the 3rd treatment but so far, no luck

I'm also on Pred and Colazal which aren't helping either
Posted 1/11/2012 9:47 PM (GMT 0)
Jbreda002, I am happy you're seeing improvement so quickly.

banagrl, have you tried 6mp or Imuran? I am on 6mp and things have improved a lot for me. It took a long time but it has helped...
Posted 1/11/2012 9:53 PM (GMT 0)
I had very quick improvement but for me it was 5 steps forward 4 steps back, it was those huge steps back that really threw me into an emotional tail spin for a while. Took me 9 months but am doing very well, everything except for my rectum is healed and that is only slightly inflamed, I will take it! (knock on wood)

Hang in there!!
Posted 1/13/2012 2:19 AM (GMT 0)
for those of you on Remicade, watch out.  I was on it for a little over a year. great results. but then developed lupus like syndromne.  that is a rare side effect of the drug. i had to stop it immediately. anybody on 6-MP for their ulcerative colitis.
Posted 1/13/2012 2:45 AM (GMT 0)
Was reading all of the positive results everyone seemed to be having!... and then I read your response Denise... :( Sorry to hear.
Posted 1/13/2012 4:19 PM (GMT 0)
So things have changed a little.  Today is the 8th day after my first treatment and in my mind I have been showing remarkable progress.  Yesterday though, I woke up with severe diarrhea and stomach cramps.

I began to feel better as the day went on, but started to feel achy in my joints.  This morning I woke up in the most severe pain of my life.  I have broken bones and torn ligaments, but that didn't hurt this bad.  I have a severe headache that will not go away, my jaw hurts on both sides, both shoulders, wrists, and fingers, and my right hip are all hurting.  It could be from the cold that we are experiencing here in Houston, but I have never felt this pain from cold before and I have been skiing before when it was -20 at the top of the mountain. 

I hope that this is not related to the remacaide because I have been feeling so good up until this point.

Denise - I'm sorry to hear that you had issues with it.

Beth - Glad to hear that you have been healing.  Hope it continues...

Bama - I have been trying to keep a positive attitude through all this.  Stay upbeat, and things are sure to turn around...

Posted 1/13/2012 4:37 PM (GMT 0)
could be a flu, could indeed be the Remicade... sdo you have a fever? If not, I'd say it's the med. That severe joint pain has occurred in a few posters here. You should let you GI know what's going on today, especially it being a Friday, long wknd, etc. If nothing else, they can give you suggestions as to what to take to alleviate the pain! I had a couple good years on Remicade, no "side effects" per se aside from strep pneumonia, which put me in ICU for a week. After that episode, the Remi never really did much for my UC, & I switched to Humira in Jan. of 2010. Good luck! I hope your pain lessens.

Posted 1/13/2012 4:52 PM (GMT 0)
It has gotten a little better throughout the day, but it still hurts like hell. It shouldn't be the flu. I had a flu shot. No fever.
Posted 1/13/2012 7:14 PM (GMT 0)
Most problems I hear about with regards to Remi, include 6mp.  Is this the case with those having issues?   
Posted 1/13/2012 8:28 PM (GMT 0)
I had been on Imuran for a good 6 months before I started on Remicade- some GI's think being on a combo of the 2, a biologic & Imuran/6MP, will prevent the body from making antibodies to the biologic. That was my GI's thought process, anyway. While I didn't have "problems" from Remicade, so to speak, when I was hospitalized for the strep pneumonia they immediately stopped my Imuran. It wasn't helping things, that's for sure! I started back up on it afer I was home.
Posted 1/14/2012 12:23 AM (GMT 0)
Don't give up, I haven't been on Remicade yet but had a similar experience and was told it was more related to the UC then the drugs. What happens is since the Remicade is dealing with your intestine the inflammation has moved to other parts of your body. Hopefully it will go away shortly but it may take longer to be dealt with. After your UC is more under control and you've had more infusions you hopefully won't have these problems.

I did end up on T3's for the pain for over a week and still occasionally take them when the pain is back.

Good luck and hopefully you'll find relief soon
Posted 1/14/2012 2:01 PM (GMT 0)
I just started Remicade Wednesday and felt significantly worse after with much more cramping and bloody stools than before the treatment. It is good to see that someone else felt better after a few days, crossing my fingers. I have been in the hospital for three weeks now and I was blindly hoping that the treatment would be more of a miracle. My doctor says it's just a waiting game at this point and that some people don't respond until after the second treatment or more, which would mean I'm stuck here in the hospital for another week and a half! I started keeping a food log to see if what I'm eating makes things better or worse. I tend to feel the worst at night and have needed pain meds. I'm also going to go gluten free for a while to see if that helps at all. I am glad to see there are some people here who get their lives back. I cannot wait to see that happen for me. Thank you for the inspiration! Also, have those of you on Remicade noticed that it makes you fatigued? I have been feeling much more tired since the first treatment.
Posted 1/14/2012 3:32 PM (GMT 0)
My daughter has been on remicade since february every 8 weeks (35 mg 6mp,apriso), fingers crossed, she's feeling well.
Her uc response was immediate, within a day- She also has the 6 -7 week feeling of needing it soon. But gets to week 8 so far.
Posted 1/17/2012 5:27 PM (GMT 0)
Ok so after about 3 days of incredible pain, all the pain is gone. I have full range of motion and no muscle soreness. I am much happier that this seems like an isolated incident. I am pretty sure that it was muscle soreness and not joint pain because I only had pain when I moved in certain directions. It was not a constant pain which suggests to me that it was muscle related not the joints.
Posted 1/27/2012 10:11 PM (GMT 0)
Ok so it's been a while since I posted. For starters, I had my second infusion. It started off with a pretty bad reaction right off the bat. I started to feel warm and tight like someone was sitting on my chest. It was hard to breathe and I started to turn red as if I had an instant sun burn. We stopped the infusion and the nurse gave me some IV Benadryl. We waited about 10-15 minutes for the Benadryl to kick in then we started back up. Take two went much better than the first try and I slept through most of it due to the Benadryl.
It has been a solid week since the treatment and I have had no adverse effects from the treatment. I am feeling great and frequency has gone way down. I can make it through most of the day now. I am actually at my Dr.'s office now and he just reduced my meds and wants to see me again in 2 months.
Next appointment on 2-16...
Posted 1/28/2012 12:01 AM (GMT 0)
Glad to hear everything went well, well after the Benadryl. My bro is on remicade and has always taken Benadryl before hand, not the IV he just takes the pill form. Not sure if that would work better for you or what but for whatever reason that's helped him.
Posted 1/28/2012 12:47 AM (GMT 0)
My doctor just suggested Remicade to me today. I have been on 40mg Prednisone for almost 2 weeks with very little progress. He also suggested 6mp. Do most people take both together? What is the recover time after the Remicade infusion? Will I feel groggy and need to rest. I am just worrying about finding care for my kids if I need to have this treatment. I just want some relief!
Posted 1/28/2012 1:39 AM (GMT 0)
ManhattanMama, I take both 6mp and Remi at the same time. I've been on 6mp for about 5 years or so, it never got me in remission which is why I'm on Remi now. But my GI's reasoning is, if I remain on 6mp while on Remi, it will lower my chance of building antibodies against the Remi.

I had a bad reaction after my second infusion of Remi, I now have to take IV Solumdedrol and Benedryl with each infusion. Plus I have to take oral Benedryl 24 hours after each infusion, I am very sleepy for 24 hours after each infusion. Do you know if they are going to premedicate you?

Jbreda, I'm glad the Remi seems to be working for you post Benedryl! :) I will keep my fingers crossed that each day continues to get better and better for you!
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