Infliximab and Headaches: What Users Say

• Soc...
• Taken for 1 to 6 months
• January 29, 2021

Infliximab for Crohn's Disease "Insurance forced me to switch to Inflectra due to being cheaper for them for my Crohn's. I did not have a say, and insurance won't listen to Dr. recommendations. While on Remicade, I only had flare-ups 3 days a month during my period, but no other issues or side effects. Yet after only 2 infusions on Inflectra, I have multiple daily loose stools regardless of a healthy diet, as well as bloody stools at least once a day. In addition to Inflectra not preventing flare-ups, inflammation, and symptoms, Inflectra has incurred more issues that I didn't have previously: kidney pain, rib pain, joint pain: shoulders, wrists, ankles, nausea, headaches, severe fatigue, Charlie horse cramping in my hands, where I can't move my thumb; it's completely contracted. I'm in my early 40s with a toddler to try to keep up with, as well as a career to maintain, and this isn't fair to me or my family."

• lin...
• Taken for 2 to 5 years
• December 17, 2013

Infliximab for Ulcerative Colitis "I have been getting Remicade infusions for 4 1/2 years. I went into remission within a week of my first infusion. My only side effects I have are headaches and some chest pain off and on. But considering how my life was before Remicade, I can handle it for now."

• In ...
• Taken for less than 1 month
• May 29, 2019

Infliximab for Ulcerative Colitis "Insurance company switched me off my Remicaid to the cheaper drug, Inflectra, causing severe flare. Headaches, nausea, diarrhea, and vomiting. No energy during the day, I have to take several naps just to get through the day. I had just gotten used to being and feeling better after fighting with my colitis. The Remicade put me into remission, and now I'm sick again because of Inflectra."

• Mom...
• Taken for 1 to 2 years
• December 29, 2014

Infliximab for Crohn's Disease, Maintenance "My son started Remicade at 13 years. He has severe Crohn's flare-ups, and this was a last resort aside from surgery for him. The Remicade treatment gave him few side effects. He didn't get any headaches or tiredness. And he didn't get sick easier like they said he would. When almost our whole house (7 of us) got the flu, Micah didn't. Micah just took his last dose 8 weeks ago after being on Remicade for over a year and a half. (Micah was on Lialda too.) Even when they used the amount of Remicade, Micah was still getting flare-ups every other month or so. They tested his blood and found out he had antibodies to the Remicade, which means his body was attacking the Remicade, and that's why it was only working right after the infusions."

• Gut...
• June 15, 2013

Infliximab 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."

• Tat...
• July 6, 2015

Infliximab for Crohn's Disease, Maintenance "I have suffered from Crohn's disease for about 2 years and took Remicade for one now. At first, I had headaches, but now I just take Remicade every 56 days and it keeps me okay. I don't feel the symptoms of the disease, and basically, I eat everything that I wish, but I'm 29, so I'm always on a diet to keep my body shape."

• bjd...
• September 9, 2009

Infliximab for Crohn's Disease, Active "It made me ill for 2-3 days after infusion, including headaches and nausea. I was also very sluggish and more tired. That was hard to accept with the acute chronic fatigue syndrome I already deal with."

• Anonymous
• Taken for less than 1 month
• October 13, 2021

Infliximab for Ankylosing Spondylitis "I started my first infusion with Avsola on September 30th, 2021. I have had nothing but side effects since then. I had dizziness, nausea, and a headache the day after, along with heat flashes. Nothing really after that, except on October 10th, I broke out into hives all over my body and had to go to the ER. They gave me a steroid, Pepcid, and sent me home. By the morning, they were gone. On October 12th, I was having a dry cough and some wheezing. I was concerned, so I saw my primary doctor. She ran an EKG, and it was abnormal. Another trip to the ER. The cardiologist reviewed and said there were no concerns, but to follow up in his office for a workup. On October 13th, I was woken up by severe pain in my chest that radiated to my back. I got up, walked around to see if it would go away. It did, but before I got up, I noticed I couldn't move my right arm because my shoulder was in severe pain. My jaw felt like I had been grinding my teeth all night. I could barely close my right hand. So I would not do it."

• Smi...
• Taken for 2 to 5 years
• March 1, 2021

For Crohn's Disease "I was initially skeptical of Remicade infusions, but the other biologics had stopped working for me. Developed antibodies to Humira, Enbrel, etc. It’s not helping the AS or Crohn's much anymore and never showed the efficacy of the others. Too many random side effects: neuralgia, PVCs, headaches, general ickiness. It works, but not well. At least for me."

• Anonymous
• March 20, 2021

Infliximab for Ulcerative Colitis "I have been getting infusions, and it hasn't helped at all. It just gives a lot of headaches, and I have zero percent energy ever."

• Anonymous
• Taken for 6 months to 1 year
• June 2, 2023

Infliximab for Crohn's Disease "Terrible side effects. I experienced very rough psoriasis, intense dental infection issues, headaches, nausea, and severe eye dryness."