Scared to start Remicade

I had about a year of Remicade infusions. I did not experience any side effects other than being a little tired after the infusion. The first infusion takes longer so they can keep an eye out for any reactions. Normally they took about 90-120 minutes, the first one took about 3 hours. They can use a good vein in your hand or on the arm. The infusion schedule is 0, 2 weeks, 6 weeks and then every 8 weeks after. Make sure they give you benadryl and tylenol before the infusion. Also, bring a book or computer/ipad to help pass the time.

Even if Remicade fails, you have some additional options...Humira, Simponi, Entyvio and probably Xeljanz.

If you are scared to start Remicade, why not try vedolizumab?

As far as what to expect, obviously it differs for everyone, but for me it did absolutely nothing (good or bad). I never got tired, sick, cold, or any of the other side effects they warn you about. They may as well have been giving me water. I almost always had a soccer game on the same day as my infusions and it never affected that either.

My doctor did bring up the Vedolizumab, but we're kind of treating it as the option after the remicade. I haven't read much about it, yet, but she wants me to research that as well. Still not on my approval list for my insurance company, or we would probably be taking that route.

The mechanism blocks the inflammation from ever entering the intestinal site period. I'm not sure how, but that's how she explained it to me. The TNF blockers block the antibodies. It's more effective because the inflammation never makes it to the affected area, correct?

I have faith in my GI, I'm located in Boston, so if anything innovative is happening in the US, it's happening here and she probably knows about it :)

I didn't realize that everyone reacts so differently to the infusions. Are they pricey or is it just my copay?

All biologics interfere with the natural signaling process your immune system uses to cause inflammation within the body. Vedo and remi vary in what part of that process they interfere with and how.

Vedo effects only gut-specific tissue, so only that part of your body is immunosurpressed. Remi effects the whole body, making one more prone to infections elsewhere in the body from UTI's, to bronchitis, and whatever else.

Vedo's mechanism of action is known as anti-adhesion. The immune system sends t-cells through the blood stream to the target area of the body. Once those t-cells reach the targeted area of the body, they must adhere to the walls of the smallest blood vessels. Normally, they stick to those walls and then pass out of the blood vessels into the tissue where the attack takes place. With vedo, the t-cells cannot adhere to the walls of gut tissue. As they cannot adhere, they cannot pass through to the targeted tissue and cause inflammation; they are trapped in the circularity system.

Remicade is an engineered protein that is designed to attach to immune system protein known as tnf-alpha within the bloodstream. One remicade protein binds to one tnf-alpha protein making it inert. Both pass harmlessly out of the body and no inflammation is caused by that protein. If you have enough remicade proteins in your system it blocks the inflammation from occurring during that period.

Hey blonde0724, hope you're doing ok! Sorry for another long post... I need to learn to summarize lol. But just wanted to chime in and wish you the best in your decision! In regards to your Remicade questions, there are several other threads here on the topic that I hope can give you a little more hope too! Speaking from my own experience, I was lucky to respond well to the drug; within 24 hours all the bleeding and pain had stopped and I quickly began having regular formed BMs, with no more urgency and back to 1-2x a day. Remicade works differently for everyone, but many people overall have success with it and compared to many of the other drugs for UC (*cough* pred) it has a much better side effect profile. One of my doctors was really funny and when I asked him about it, he said that you wouldn't just want to randomly give it out to the people walking outside on the street, but in his patients' experience overall he felt that it was relatively safe compared to the complications of untreated UC. Unfortunately, it's apparent that Remicade doesn't work for everyone, and as explained above, Entyvio works via a different mechanism. In clinical trials many of those who failed or lost response to anti-TNFs achieved a positive response with Entyvio, so it seems that this new drug may be a hopeful alternative if you find yourself there! If you do want to go the Entyvio route, I hope your insurance company approves it soon!

Despite my own positive experience (so far!) I am aware that there are of course risks with Remicade and you may find other people on here with more experience with those. You will want to avoid certain fungal and bacterial infections, but I'm from the same area as you, and my doctor said that there aren't really too many bugs here to worry about. He said to be careful about things like listeria or salmonella from food poisoning, but other than that I don't really have too many restrictions. Also you'll want to try to be proactive about sunscreen/sun protection. Remicade is also not really a permanent solution; for some it works longer than for others. I had very severe UC, but since beginning my infusions I have been doing well. Zero side effects (other than a little tiredness after the infusion). Some may rarely experience allergic reactions - your infusion nurses should inform you of the appropriate pre medications to help avoid these (generally tylenol extra strength, zyrtec or benadryl, etc.). My infusions began at 3 hours but I usually complete them in 2 hours now. And you can pick whichever arm you want to use! I actually look forward to my infusions because I get to chat with other UC people at the center. It is actually kind of relaxing and not painful for me at all; you can catch up on Netflix there! :P

I became very sick with UC right after my college graduation and also was very bummed at reaching the end of the treatment pipeline! It took me a long time to come to terms with this; please understand that your feelings are totally expected. And I was so scared to start Remicade too! I am doing very well now but my relatively brief but intense bout with active disease really affected me for a while. You may ultimately go with a different treatment decision, surgical decision, etc., so definitely do your research too, as it seems you are doing. But wishing you all the best and hoping that you have a wonderful and long lasting remission soon! Keep us posted!

Post Edited (teddy92) : 6/20/2014 11:28:53 PM (GMT-6)

i'm getting my third infusion of remicade next week. i was also really scared to start it and had to fight with my GI a little bit about it, but i'm grateful for it now because it seems to be putting me on the path towards remission. i was hospitalized for a month and got the first infusion while there, started seeing a bit of improvement but it wasn't until after the second infusion that things really got better--formed BMs, less of them, no blood, less urgency, etc. i'm also currently on a prednisone taper so am confused about which side effects are coming from remicade and which are coming from prednisone. i think the joint pain i'm getting is from remicade, but other than that i don't think i'm experiencing any side effects. a little tired after infusions but not debilitatingly. it's called a "rescue therapy" and that's definitely what it is... i don't think it's something that should be used long-term but to get you out of a horrible flare that won't come down otherwise, it's certainly worth a try! good luck!