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Infliximab / Remicade doesn't work

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Ulcerative Colitis
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Posted 6/28/2018 11:29 PM (GMT 0)
I've had 3 infusions of infliximab and have noticed absolutely no effect. Mesalazine and azathioprine also don't work. The only thing that works is prednisolone.

Are there any other non-surgical options? I really couldn't handle a colostomy bag.
Posted 6/29/2018 3:01 AM (GMT 0)
That balance of trying as many things as you can but only to the point of not waiting too long. If your blood work fails to improve, can't taper off the prednisone and need constant iron or blood transfusions. It may be time to research your options, there are surgeries that result in other than a traditional bag, such as the Jpouch or Kpouch procedures.

Some other drug options,

Adalimumab (Humira). This prescription medication is injected into the abdomen or the thigh for those with moderate to severe UC. After your doctor shows you how to use this drug, you can administer it at home. Injections are performed biweekly.

Certolizumab pegol (Cimzia). This injectable medication has been successful in helping those with UC maintain remission. The injection is administered by either your doctor or yourself. If it works well for you, it’s usually administered every four weeks.

Golimumab (Simponi). This medication is typically recommended to people who are having difficulty coming off of steroidal treatments for UC. This is also an injectable medication that can be administered at home or by your doctor, and is usually given monthly.

Natalizumab (Tysabri). This is an infusion that can only be injected by a healthcare professional at a certified infusion treatment center. It’s used on people whose other UC treatments have failed them. The injection takes about an hour.

Vedolizumab (Entyvio). Similar to Natalizumab, this intravenous medication is used to treat people who haven’t been responsive to any other UC treatments and are trying to stay off of steroids. The infusion process for this drug takes about 30 minutes.

Post Edited (Virdent) : 6/28/2018 9:12:47 PM (GMT-6)

Posted 6/29/2018 12:17 PM (GMT 0)
Entyvio (IV injection like remicade) or xeljanz (a pill) are both in different classes of biologics then remicade, and are worth a shot if you've failed it. Humira, Simponi, and Cimzia are all very, very similar meds within the same class of biologic medication, and are most likely to respond the same (I would not bother with them, myself, in your case). Stelara is another different class of biologics (different then remicade, xeljanz, and entyvio) not officially approved for UC yet, but is being prescribed off-label, and in clinical trials for UC and some here have tried it. Natalizumab (Tysabri) is NOT recommended due to PML risks, use the newer and safer entyvio that replaces that older med and does not have that risk. So there are still biologics with a reasonable shot of helping you left to try.

Are they going to do one more remicade infusion, just to be sure or are you done with it?

How bad are your current UC symptoms (bms per day, pain, blood, urgency, etc.)?

You do realize that in the eventuality of a surgery, an appliance (a colostomy bag) would be just a temporary thing? As the defacto for UC surgery is to get a j-pouch or IPAA which is an internal pouch which enables you to sit and poop as you do now when finished. An appliance is necessary for a few months between surgeries then you get rid of it for good. In some cases, they can do the j-pouch surgery in 1-step and there is no need for an appliance even on a temporary basis.
Posted 6/29/2018 12:36 PM (GMT 0)
Have you had your blood levels checked? They can adjust dosing and frequency. I needed a larger dose of Remicade and after the dosing change it worked great for me for almost 5 years.

I was offered Tysabri if I wanted to avoid surgery, they now have a test for the virus that causes PML and only a very small % of people with the virus get PML when they are on Tysabri. But it wasn’t something that I wanted to mess with.

If a change in Remicade dosing doesn’t improve your symptoms then I’d try a biological that uses a different mechanism like Entyvio. My belief is that if the mechanism didn’t work with the one med than why bother with the same type of med (humira, cimzia, simponi)
Posted 6/29/2018 2:04 PM (GMT 0)
What is your Remicade dose? I was on 10mg/kg every 4 weeks
Posted 6/29/2018 9:54 PM (GMT 0)
I would ask for a test to determine the level of remicade in your blood stream to see if you just need a higher/more frequent dose and to see if you developed antibodies. I developed Humira antibodies within 8 weeks, which is rare, but clearly it happens. This is why I am going to try infliximab with a low dose of Imuran. My GI said that if my test came back with decent levels of Humira in my blood and no antibodies, we would have switched to a different type of biologic and skipped the infliximab, because then it probably wouldn't work.
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