Remicade

I would like to just start a discussion on Remicade .. My GI wants to me start remicade soon he is checking into having it paid for by the company to help me out ... I guess I just want to know other people's experiences with remicade and I know there are alot of potential side effects .. like TB or cancer

This will be my first time on remicade so any info will be helpful. 

and if you are any other meds beside remicade because he talked like he would have me stop everything and only be on remicade

Thank you

Hi. My husband has now been on Remicade for over 4 years. He was put on remicade when he was in a very serious condition in the hospital and facing surgery (6 weeks in hospital with crohn's and c-diff, and losing 50 lbs, and 120 mgs of solumedrol didn't help him), and remicade saved him from surgery and got him home.

My husband has done well on Remicade. After the infusion, he has a couple of days where he has flu like symptoms - fever, joint pain, fatigue, and headache - but it is manageable with tylenol. He gets his infusion on friday and just deals with the flu-like symptoms over the weekend. They pre-medicated him with benedryl and 40mgs of solumedrol before they give him his remicade infusion to help suppress any bad reactions.

He gets tested for TB yearly - apparently that is the protocol at the infusion center he goes to. So far, knock on wood, no problems. He doesn't get very frequent infections or anything like that - but when he does get sick, it takes him slightly longer to recover. He did have one flare-up on remicade but it was significantly milder than the one that put him in the hospital. I believe that it was the case because he was getting treated with remicade. His doctor upped his dose to 10mg/kg of body weight back in Nov 2009 because of this flare up, and since then, he's been flare up free (knock on wood).

I am still terrified of all the possible side effects, but Remicade has made our lives normal so far.

PV

I was on Remicade for my UC for about a year. I didn't have any side effects from it but it just didn't work on my UC. The only thing was I used to be wiped out tired for 2 days after an infusion but then I was fine. My mom has been on Remicade for 5 years now for her RA. It has always worked great for her but now it's losing it's effectiveness. That is the problem with the biologics. They work and they eventually stop working. Not in all cases of course but i have heard that over and over again.

Thank you everyone for the info you have shared you have all been very helpful!

I am back on Entocort - the Imuran didnt do its job - the GI wants me to try to come off the steriods one more time with the Imuran and see if it holds. If not - on to the remicade....

How often do you get infused with remicade?

Everyone responds a bit different. Your taking the loading doses. Just might take the 3rd hit, you never know. I have CD and it took about 3 for me. Entocort works great for the short term. I can no longer take Remicade as I encountered various issues after awhile. It worked great for awhile. Now taking Cimzia and it's not taken hold yet I'm not comfortable yet. Give it more time.

My daughter didn't see a difference until the last booster (so infusion 4). Now makes it to week 8 between infusions with no issue. Give it time.. I have learned everyone is different with this drug.

Remicade is great for me. I've been on it almost 2 years with no issues and I'm in total remission. I eat what I want and have no problems with that. I think the only downside I have right now is some joint pain in my knees when I get close to my next infusion. I can live with that compared to the hell I went through while I was on prednisone.

As for TB and cancer, you will take a test to check for TB before you are allowed to take Remicade. There have been several studies about the increased risk of cancer, and although there is an increase when you look at the entire picture the odds are still very small.

I know everyone is different but I hope you can have the same success.

The jury's still out for me on Remicade. I had some kind of reaction to my first infusion and I developed a rash all over my arms and neck. I've not had one since (just had 4th infusion) and I don't take anything but a daily allergy medication.

Since I started Remicade, I've been pretty significantly constipated, which I've never really been before. Whether that is because of the Remicade or not, I don't know. My joints also began to flare shortly after my first infusion, and I've since started to hard serious muscle pain as well. The joint and muscle pain could be a flare of my hypermobility syndrome that just happened to coincide with my starting Remicade. I voiced concerns to my GI about a potential Remicade reaction but she wants me to continue on the Remicade because she thinks it's helping. I'm not so sure, but am willing to keep going for the moment. I have five weeks until my next infusion to figure things out.

OOps sorry don't know what happened with the double posts above from me....

I am currently on Methotrexate, Asacol as well as Salofalk supps and prednisone. So far they don't seem to be holding me.

73Monte just want to reiterate what you said regarding your above post on being on an immunosuppressant and a biologic at the same time.

My GI dr is very conservative. A few years back when her GI colleagues started their pts on Remicade they took them off the immunosuppressant they were on. She decided that she would leave her pts on immunosuppressant and ADD Remicade. Fast forward 5 yrs, many of her colleagues pts have developed antibodies to Remicade and it no longer works for them. However, NONE of her pts have developed antibodies are doing well on Remicade.

I am still afraid of this drug s/e and am having a really hard time right now because I am beginning to flare again and she said if this happened once more this year I would have to go to Remicade. We cant afford this medication so don't know what we are going to do??

I am soooo tired of all of this, I just want my life back!

Remicade is being recommended to me, I'm doing my research. I have crohns with a fistula, going on a year. I cannot take prednisone, allergic reaction. Currently on lialda, canasa supp, run 2 cycles of flagel, also probiotics, high iron supplement for anemia. The lialda flagel has stopped the bleeding.
any advise from remicade users would be appreciated.

My doc said Remi if it worked would work after a few infusions. If it doesn't work by then it's not going to. Did nothing for me ... about 6/7 infusions, had a scope and no improvement. Moved onto Humira. So my understanding is if it works it will start pretty soon - if not give up and try something else.

I can't seem to find anymore recent post/threads on this forum. It's slightly upsetting. I wonder why it a ghost town. If anyone does answer, it might be a moderator - anyhow, here's what I have to share:
So my 10 year old son was diagnosed last April (at the age of 9) with ulcerative colitis. He was on a suspension compound medicine, because he wasn't accustomed to taking pills, but then was switched to delzicol early this year. Well, delzicol isn't working. The pills have shown up in his stool, and they aren't doing anything for him. He has lost 5-6 lbs, he's back down to 50 lbs, and his dr said it's time for remicade. My son was so upset. Meanwhile, he's been tired, fatigued, has had a lost of appetitive, not very active, grouchy, just not where he should be while being medicated - or what you might expect because he's supposedly getting treatment, but yet not benefiting from any real relief.
So, my son and I are green to this remicade stuff, and I wanted to get an idea of what might be a better treatment just in case remicade doesn't work out. I'm actually wondering if seeking a 2nd opinion is worth it. I don't know, I just want The Lord to miraculously heal my son from this awful state. I know He will, I'm just waiting to see what He has in store, because my son is in desperate need of comfort and peace from what UC has kept my boy from!