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Behçet's UK
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Remicade

Anyone have results from Remicade? I am just getting started on it. My doctor says there are a lot of “levers to pull” if needed, meaning that they can combine it with other things or adjust frequency.

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Been on Remicade for 15 years and it's still working for me!😊 It takes four to five infusions before you gradually start to feel better, so don't expect one infusion to suddenly make you better, it has a gradual effect. Good luck👍

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Thank you! I will be getting my fourth infusion this week. Hopeful that I will start feeling better in a few more months. There are some very good signs here and there. I’ve been having larger swings than normal with my hormone replacement requirements, so I feel like something potentially good is happening there. (Behçet’s destroyed my pituitary so I have to replace almost all hormones with synthetics). Ulcers are down by about 90%. Geographic, sore tongue is better. Bones/joints/eyes somewhat worse but manageable to a point. Your encouragement makes me feel better already!

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Have you been able to work? How are you doing now? So glad it is working well for you. I miss my work so much - love my job. I’ve been out of work with one problem after another.

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Yes, I worked most of that time, retired now. I'm doing well but had my infliximab dose increased about 6 years ago to 10mg per kilogram every six weeks instead of the usual 5mg per kilogram every 8 weeks. The higher dose works better. I'm also taking mycophenolate. I loved my job as well so very grateful I was able to continue with it. Sorry to hear you are having a lot of problems, have you tried infliximab?

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I think that infliximab is remicade, and yes, I am taking it. Just finished the fourth and final loading dose and have to wait eight weeks before the next Infusion.

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Yes, Remicade is the trade name for infliximab. Sorry, I asked if you tried it when you already said you had 4 infusions 🤔 Hope it continues to improve your symptoms! Take care

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Infliximab (trade name Remicade) was great for me. I became unwell with a Behçet’s flare triggered by flu illness in March 4 years ago. Started Infliximab infusions that June and also given mercaptopurine to reduce risk of antibodies developing. Able to reduce oral steroids from 60mg prednisolone daily down to my maintenance dose of 5mg, ulcer free and returned to work so got my life back. Good luck!

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Whoa, you were on 60mg prednisone a day?? So glad you’re down to 5mg. I was on a lot of prednisone at first, but it sort of ganged up on me and I got multiple severe infections as I was stopping it. The withdrawal must have been rough for you. It took me forever to get over all of the withdrawal. Glad Remicade worked well for you! How long were you on it, at what intervals and how much per infusion? They’re starting me at 3mg to start but said some people go all the way up to 10mg per unit. Not sure how they do the measurements exactly, but loading starts at 3mg. I am at the eight-week hold starting with today’s infusion. Doctor says they’ll increase dosage and infuse every four weeks starting in May. They’re telling me that it’ll take a good while to get the dosing right.

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I think my dose was 300mg infliximab in 150 of saline every 8 weeks in 2015. It worked well although required a 2 hour trip to the hospital to have the infusion.

When I was better, I was working, no ulcers or joint pains etc so the frequency of infusions was reduced to 10-weekly and then 12-weekly. I was exercising 3 times per week; swimming a mile, lifting weights in the gym and cycling.

Sadly in August 2017 a skin rash developed on an overseas holiday then the Behçet’s ulcers returned. Infliximab was increased to every 6 weeks and I had to increase prednisolone (to 20mg) and “rest” which I hated but I continued to go to work.

Eventually stopped Infliximab Feb 2018 as I had developed antibodies, which was why it was no longer effective.

I started Humira injections at home in April 2018 and continue these now every 2 weeks. Back to activity eg did 46 mile charity bike ride in a day in June, working and being mum to 2 little ones. Prednisolone finally back down to 5mg daily maintenance dose.

Make sure they check for the Infliximab antibodies as well as therapeutic blood levels.

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As another encouragement, I have a Behçet’s buddy who was on Infliximab for 8 years. She would have the infusion in her work lunch hour as she worked in the same hospital and had it every 4 weeks. I needed to hear stories like hers to persuade me it would all be ok!

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Thank you for the encouragement!! I am maybe just beginning to notice the effects because I was able to run more errands yesterday after my infusion. The doctor said it will take at least a couple more infusions to notice any major differences because I have a very “very long way to climb.” Hopefully, as the remicade gets going more, I will be able to sit upright more than the current 2-3 hours before needing bed rest! Currently having an issue with my eyes and with muscle damage as the primary points of attack. Ulcers have definitely gotten better!

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Thanks, excellent advice. I will have them check antibodies. I started Humira and Methotrexate but had to switch to infliximab because I developed Humira antibodies. Methotrexate isn’t an option anymore because it somehow damages my lungs. I am now on oxygen partially because of it. My doctor wants to give me infusions every four weeks after this eight week protocol pause. I’ve been thinking about asking for low-dose prednisone again to see if it will make me strong enough to be able to sit upright for long enough that I can go back to work. Problem is, the more steroids they add, the more squirrelly my body temperature and heat flashes get. The Behçet’s also damaged my hypothalamus, so my body temperature is very erratic. I’m already sleeping on four large freezer packs at night. I asked about the draconian Cyclophosphamide treatment that is currently under study. The doctors doing the study are thinking that it has a much higher remission rate than any other experimental treatment of Behçet’s. Will look up the info and post it here later. Problem is, Cyclophosphamide is very toxic and can actually cause bladder bleeding and bladder cancer. My doctors say that they’d only give it to me if I were in imminent danger of death without doing something radical. Thanks again for the advice!!

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