Infliximab and Flare-Ups: What Users Say

• Red...
• Taken for 10 years or more
• August 22, 2015

For Rheumatoid Arthritis "I was diagnosed with reactive rheumatoid arthritis in August 1998 after getting the first shot of the Hepatitis B vaccine, which triggered my RA. I was on prednisone for a year, Plaquenil, sulfasalazine (which almost killed me), Arava (leflunomide) for a while, and was on Humira, which didn't help. I changed to Enbrel, which gave me rashes. In 2000, my rheumatologist, who was into RA research and had RA himself, ordered Remicade infusion with MTX. That's 15 years of quality of life, and I am continuing 5 mg Remicade every 10 weeks. All my RA labs and tests are negative except for CCP (which is 5X higher than normal). This coming month, I'll be off my MTX. Even when I'm in remission, I did not stop my Remicade because flare-ups are worse than the first symptoms."

• Chi...
• Taken for 1 to 6 months
• January 2, 2020

For Ulcerative Colitis "Was on REMICADE. Everything was great, and I was back to feeling normal and in remission for a long time. My insurance company did a mandatory med change so they could save a little bit of money. Now I'm in major pain again, going through a flare-up and near having to go to the ER to get help. One dose of Inflectra was all it took to mess me up again. My insurance won't even let me back on REMICADE. I truly hope no one else has to be forced on Inflectra."

• Bab...
• Taken for less than 1 month
• July 13, 2019

For Ulcerative Colitis "I have only been living with this UC for about 5 months and couldn’t find anything to help. After the 1st infusion, I noticed a big improvement until I hurt my back and took a lot of ibuprofen and Aleve for the pain, and had a major flare-up. I had my 2nd infusion, and then that cleared up by about 80%. Now I have anxieties, but not from Remicade. I'm going for my 3rd infusion in 2 1/2 weeks, then every 8 weeks. Prayers, a positive attitude, and a good diet, I will be fine."

• Gur...
• Taken for 1 to 6 months
• September 16, 2019

For Ulcerative Colitis "I had severe pancolitis and was hospitalized for 2 weeks. They started me on Remicade because none of the mesalamine ever worked for me. It worked at first really well and worked well for about 2 months. After that, the flare-ups became so bad they were giving it to me every week. Even that didn't work this time around, so the only option I had was surgery. The doctors didn't want to try other medications since I already had so much Remicade in my system. After the surgery, I immediately felt great. Some people might not like the idea of having an ostomy, but I have gotten used to it. I did have the opportunity to get a J pouch, but one of my dad's friends had a very bad experience, so I decided not to."

• Anonymous
• January 9, 2010

For Crohn's Disease, Maintenance "I am a 29-year-old male and have had Crohn's disease for 8 years. When I was going through college, I became very ill and, over a two-year period of ups and downs, lost 100 lbs. Only due to the grace of God, I made it through college with a civil engineering degree. I was first put on all the typical drugs: Imuran, Pentasa, Asacol, Prednisone, B-12 injections. I received the Remicade initially only when I had flare-ups. I watched my diet to a T (specific carbohydrate diet), but would still end up flaring up. For the past 6 years, I have been on a maintenance dose of Remicade every 10 weeks and have done very well. I do have a goal to eventually get off the Remicade."

• bgi...
• February 25, 2016

For Ulcerative Colitis "I've been getting Remicade infusions for about 15 years. It is the ONLY drug that helped me. I'd been in remission for the past 5 years. Last infusion, my insurance wouldn't pay the hospital. After back-and-forth communications from doctor, hospital, and insurance companies... Medicare... Blue Cross/Blue Shield... Tricare... doctor decreased my max dosage to 1/2 dose. Now I'm having a flare. It's a wonderful drug, but the cost is exorbitant... especially for old people like me. Sure was good while the Remicade ride was working. Good luck, all."

• Gut...
• June 15, 2013

For Crohn's Disease, Maintenance "After resisting having read American Black Box warnings, I was finally persuaded through my consultant's actual experience with the medicine - that and having 6 operations, colostomy, and the disease still beating me. I was exhausted and unable to walk or do anything other than essential basic necessities - if that. I have had three infusions of Remicade so far along with steroids for peri-anal fistula, Crohn's, at two-week intervals, and I have some shade of a life back. Immediately after the medicine, I am very tired. I have headaches that last for about four days at a time, paracetamol doesn't touch them. I get bad cramps in my legs, especially at night, and occasional mild flare-ups, BUT NOTHING like before. Stress plays a factor in starting my flare-ups."

• Anonymous
• September 6, 2016

For Crohn's Disease, Maintenance "I was diagnosed in 2013 with IBS. Then in 2014 IBD. Now, in Feb 2016 with Crohn's. Tried a lot of meds, nothing worked. Went to Remicade, well, it has been working but never lasts that long. By 5-6 weeks, I'm starting to flare. This time, after loading doses, they used me to 7.5, and that worked. I got 6 weeks out of it instead of 4 weeks. But this time it's bad, started to flare in my belly 4 days ago. And now I can barely move, feels like I've been hit by a truck. All my joints hurt so bad. This is awful. Hoping to get an infusion. But I read all the same issues."

• Not...
• May 16, 2016

For Psoriatic Arthritis "Remicade just isn't working for me, or not yet. When I did my 1 and 2 infusions, I could tell a difference. I had my 3rd one and have to wait 8 weeks. After 3 weeks, I had a flare-up, and I am in week 6, and I still feel awful. Maybe I need them more frequently or a higher dose. I am feeling so darn frustrated. I was hoping for a miracle drug to make me feel better, and so far, it's not. I read how it helps everyone, but I want that for me too! Can't wait to see my doctor so we can get together and discuss the pain."

• Jos...
• Taken for 1 to 6 months
• October 27, 2020

For Ulcerative Colitis "I've been on Remicade for four months, not very long I guess. After being in the hospital for a couple of days, I noticed almost immediate improvement after my first dose, and over the course of the next four months had good and bad days, mostly good until this past week. They increased my dosage to every four weeks. But even this whole last week, I've been in a major flare. I get my next dose tomorrow, and I'm hoping it works and everything will get back on track until the next dose. I never understand what's going on. All I eat is chicken and carrots or squash every day. I just want it to work regularly, and I want a normal life again :("

• Der...
• December 28, 2015

For Ulcerative Colitis "I was diagnosed with pan UC 2 years ago. My doctor gave me different medication that didn't work for me and made me worse. I lost 20 pounds in two weeks and didn't eat or drink anything because I would go to the bathroom ten times a day. My doctor finally recommended Remicade, symptoms went down, and a year later, I've started flaring up again. They increased the dosage, and I get it every month now. But while I'm writing this, my flare-ups started again, and it's been two weeks of bleeding, and my doctor is on vacation. I don't know what to do next, I don't want to have surgery."

• KMc...
• Taken for 1 to 2 years
• May 28, 2017

For Rheumatoid Arthritis "Initially, it worked great. When the doses were administered close together, I rarely had a flare, and when I did, they were very mild. As the time between infusions was increased, I began to have more frequent and severe flares. My rheumatologist and I are currently working to adjust the dosing schedule."

• Mab...
• Taken for 1 to 6 months
• June 29, 2024

For Ulcerative Colitis "My skin peeled. All over my whole body. After two weeks, I had a flare-up. At the present, I’m watching what I eat to see what foods may have caused it. I was on mesalamine but the doctor didn't refill my prescription after I got the infusion. I really can't say whether it helped or not."

• Chr...
• Taken for 5 to 10 years
• July 5, 2014

For Crohn's Disease "Severe scalp psoriasis developed, no flare-ups, though."