Refusing remicade, bad idea?

Hi.

I was put on Infliximab/remicade in September. I was given my third infusion in November and was due to get my fourth infusion in January. However, between the third and the fourth infusion I experienced a very bad flare up. So bad it caused a bowel perforation. This resulted in me not receiving the fourth infusion in January due to infection caused by the perforation.

I had surgery at the start of March where most of my large intestine was removed and I now have an ileostomy bag.

I have not talked to my medical consultant since the surgery but I heard he gave the go ahead for me to start back on infliximab. I read online that infliximab can cause bowel perforations and in some cases make inflammation worst. This made me anxious about going back on infliximab- I cannot afford to have another perforation.

I went in for my infusion today in hope I would at least get an opportunity to talk to my IBD nurse to clarify a few things before they gave me the infusion. But the IBD nurse and my consultant were off on holidays so I wasn't going to get an opportunity to clarify and discuss before being given the infusion.

As a result I refused to give consent and did not get the infusion today. I am worried what is going to happen next; if Infliximab is the best drug for me to be on then I hope I didnt mess things up by refusing to take it today. I am also aware that I probably wasted a lot of the health services money as I know infliximab cost a lot. This all makes me feel bad, I just didn't feel comfortable starting back on remicade before talking to my consultant.

I am curious to know peoples thoughts on my situation; Did I make the right decision? Has anyone ever refused infliximab before?

If you don't have another dose of the Remicade, ask the doctor about another biologic you might go on. If you are off for a while you might cause worse damage to your insides. If you decide to go back to Remicade, don't wait for a while. Otherwise, you might develop antibodies. Let us know how it goes.

I have never heard of Remi increasing chances of bowel perf. Now if you had such a bad flare maybe the Remi doesn't work for you so another biologic might be a good plan.

Don't go back on Remicade after having had a bad reaction. This is a serious drug, the next time around it might kill you. I had a bad reaction after my 3rd infusion in January and my body is really messed up and the immune system is out of balance. Now I have Lupus like symptoms to add on top of my Crohn's.

Bufford said:

Don't go back on Remicade after having had a bad reaction. This is a serious drug, the next time around it might kill you. I had a bad reaction after my 3rd infusion in January and my body is really messed up and the immune system is out of balance. Now I have Lupus like symptoms to add on top of my Crohn's.

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I don't think I would say I had a bad reaction. Remicade made me feel better and eliminated my symptoms up until the bad flare up that occurred the 3rd and 4th infusion.

Are you going on Humira now?

I was on Remicade twice. The second time it caused a lesion in my scalp.

ronroush7 said:

I was on Remicade twice. The second time it caused a lesion in my scalp.

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How did that happen? and how did they treat it? Did you go on humira after?

I panicked too. They use part of a mouse to make it and my consultant joked saying I might grow a tail. I kicked up a fuss but took the infusion, mainly as you say because of the cost, and I didn't want to waste nhs money £4000 I believe.
A week later I had my colon removed. So it was wasted on me anyway. I think you did the right thing. Tell them why and that you had expected to speak to someone first. I email my team of doctors via their secretaries. They have been fantastic answering my concerns.

Hope this surgery brings you some relief for a long long time.

Nomis1234 said:

How did that happen? and how did they treat it? Did you go on humira after?

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I had to have surgery. Antibiotics didn't work. They tried Stelara afterwards. It didn't do anything for me. I just started Humira.

Nomis1234 said:

I don't think I would say I had a bad reaction. Remicade made me feel better and eliminated my symptoms up until the bad flare up that occurred the 3rd and 4th infusion.

Are you going on Humira now?

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I'm off of the immune suppressants for now. I returned to taking the mesalomine enemas with better success in controlling inflammation in the rectal area with good success so far. I control my diet, and keep stressors to a minimum for the rest of my small bowel.

I'm just starting my second try at remicade.. That's what I was initially on for several years and it was a miracle drug for me.. I did great on it.. I had a baby and switched to cimzia (my infusion site was a 70 mile drive for me so with a newborn it was tough) Cimzia didn't work for me, so am now back on remicade with imuran as an addition.. I can already tell that I'm feeling a little better (I've only had 1 infusion) but was able to eat beef the other day and i haven't been able to do that for a long time.

That's super

During clinical trial phases, new drugs must report ALL symptoms experienced by those in the trials. This is why you see cold medicines warn of worsening symptoms or migraine medications warning worsening migraines. When you read that remicade may increase inflammation, in most cases it is because the drug didn't work for that particular patient and their disease progressed. The drug company has to label this as a symptom.

If remicade worked for you before, it is likely it will work for you now... If you are still concerned about remicade or humira that's fine but express this to your doctor and have a completely new game plan worked out. You need to do something whether thats different medications, or a diet and exercise plan. Doing nothing will almost certainly be a losing battle.

Gianni said:

During clinical trial phases, new drugs must report ALL symptoms experienced by those in the trials. This is why you see cold medicines warn of worsening symptoms or migraine medications warning worsening migraines. When you read that remicade may increase inflammation, in most cases it is because the drug didn't work for that particular patient and their disease progressed. The drug company has to label this as a symptom.

If remicade worked for you before, it is likely it will work for you now... If you are still concerned about remicade or humira that's fine but express this to your doctor and have a completely new game plan worked out. You need to do something whether thats different medications, or a diet and exercise plan. Doing nothing will almost certainly be a losing battle.

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Agree