BEWARE OF REMICADE

I am sorry that you had a serious reaction to Remicade. Serious reactions do occur but are rare. I understand that being one of the ones to develop a serious reaction is little solace if it is you.

You are welcome to post more here at Healing Well, but I do ask that you refrain from posting in all CAPS. All CAPS is considered yelling and many find it difficult to read. [I do get that you feel like yelling about this...]

I lost all feeling in my arms and legs after my second infusion. That was it for me!

Hi lowen,

I'm soon going to start Humira...I don't have any doubt that you had a terrible experience with it and I'm sorry for what you're going through as a result...I do have some questions though...

Did you inject it into your leg or your belly?

All the literature about Humira is plastered with warnings about not using any pens that are cloudy or have flakes, did you also make sure your pens were clear before you used them?

I'm just trying to figure out (if possible) what could have caused the reaction you had to it, in the hopes that I can make sure to avoid the same experience you've had.

Thanks

Thanks Ides, the warning is also there for the Humira. Sometimes with my type of luck I just naturally expect the worst lol.

WOW mmckenna, that must have been horrifying for you!!!!!!!! I'm so sorry you went through that! I just started Humira last night actually...my GI told me to choose between Humira and Remi, said the only real difference between them was how they're administered...the idea of 3-4 hours getting remi infusions compared to just using the Humira pen at home made it an easy decision for me.

So how have you been doing with Humira? How long have you been on it now?

Very good points Jake!! There's really no guarantees in life right, and that includes living with CD or any other disease.

Even with the GBS, I'm still very thankful for the 8+ years of mostly symptom free living. While the GBS really did suck, its hard for me to complain when it worked so well.
I've done a lot of research on it, and I've talked a lot with my doctors. Looking back they feel it was unlikely the GBS was actually caused by the Remicade. Guillian Barré is the action of a overactive immune system attacking the myelin sheath over the nerves, sort of like Crohn's attacking the lining of the gut. Since Remicade subdues the immune system, it is unlikely it's the cause. As Jake said, when you use drugs like this, it creates other issues in the body that rear their ugly head. It's very likely my GBS was triggered by the campylobacter bacteria from some undercooked chicken I'd had the night before.
But, it's very difficult to prove the exact cause of GBS. GBS isn't fully understood, hence it being called a syndrome. To be on the safe side, we decided to get off the Remicade and try the humira.

The humira has worked very well, and it's certainly easier to administer. However, I'd be lying if I said I didn't miss the 3 hours in the infusion clinic with my feet up and being forced to rest every 8 weeks. Sort of a forced short vacation.

The GBS was scary at first, but once I learned enough about what was going on, it was actually an interesting process. It's a very eye opening experience. Experiencing what it's like to be totally paralyzed really opened my eyes. I certainly would not want to go through it again, but it is now part of my history, part of who I am, and I wouldn't change that.
Going through these sorts of experiences really teaches you something, and doing something useful with that knowledge is what differentiates the victims from the survivors. I refuse to be a victim.

I was on Remicade for a few years and fortunately never had a reaction. I might be going back on it in a few years. We'll see. I'm sorry you guys had such awful experiences. I hope it at least had the decency to keep your Crohn's under control while it was messing with the rest of you!

I did a trial for this drug called Vedolizumab, once. One of the warnings for it was brain fungus. Apparently, it's closely related to another drug, Natalizumab. Both of them block a specific passageway in the intestines, which prevents certain immune system cells from getting in. Natalizumab, however, ALSO blocked the same passageway in the brain. The fungus was actually fairly common; something a lot of people carry around but never get any symptoms, because their immune system keeps it in check. Well, a few people on the drug had it, and because their brain was no longer getting those immune system cells, it came ROARING back to life. It killed a couple people and caused severe damage in a few others. Most of them were caught in time, though.

Anyway, since Vedolizumab was so similar to Natalizumab, they had to put that warning in there for legal reasons. Full disclosure and all that. But there was never any real chance of actually getting the brain fungus, since the drug didn't affect the brain at all. Obviously, not all warnings are like that. But they CAN sometimes be a lot more scary than the drug really is.

Also, this is why Dr. William J. Sandborn is such a great doctor. He mentioned the brain fungus and said not to worry about it, but obviously I wanted more information about it. When I asked for more detail, his eyes lit up. He explained, without dumbing it down. I did the dumbing down myself (he mentioned the specific cells and barriers and molecules, but i forgot the names almost immediately). He was very excited by the whole thing. You can tell he really enjoys his job. I hope UC San Diego appreciates him!

Bane... please see above. I am on natalizumab aka Tysabri. You are slightly missing a step with the "brain fungus" thing... and it really isn't a brain fungus either. It is actually a virus in your system that can reactivate due to how Tysabri lowers the immune system. It is called the JC Virus. This can reactivate and cause PML (the rare brain disease). However, there are tests out there to see if you carry the JC Virus, and I believe... like you say.. that Vedolizumab (which I really hope gets approved soon) targets only the intestines, not the entire body like Tysabri does. I have come back negative for the JC virus twice... so I feel fairly comfortable on the medicine. I was actually in the Vedo trial a few years back, but I ended up in the hospital on emergency steroids as I had partially obstructed. I have a strong feeling I was one of the placebo patients (of course). I just can't wait until the FDA approves it here so I can jump onto the safer Vedo.

I tried LDN back in the day and it landed me in the hospital with multiple fistulas, so much rectal badness, and the flare the eventually led to surgery and colostomy. Whaddareyagonnado?
I began to go into anaphylaxis on my third infusion of Remicade and had to discontinue even though those first two infusions had worked so well. So well. Like, “Crohn’s Disease, what’s that!?” Well. So I had to move on to other, less effective bios. Whaddareyagonnado?
Did you know that Topamax (Topiramate) has a 1:1000 chance of causing acute glaucoma? I didn’t but I found out after about two weeks on the drug for non-CD reasons. I could have gone blind- the pressure in my eyes was extremely high by the time we figured out what was going on. Whaddareyagonnado?
As I tend to say when people hear my health history and give me THAT look (you probably know the one)- “crap happens”
Doesn’t mean life is over, or that you go around crying that the sky is falling. You just deal and move on. This board has gotten me through some tough times and pretty much everyone is amazing but I don’t think you’ll find the kind of support you seem to be looking for.

The possible side effects of these drugs are scarey. doin my research, I found that the worst side effects were present when remicaide was used in conjunction with other immunosuppressents. that is the reason we chose to put our son on remi only after being possitive there was no residual immuran in his system. It truly has been a life saver for him, but we keep a close eye on him all the time.