Infliximab and Hair Loss: What Users Say

• Dan...
• March 10, 2015

Infliximab for Ulcerative Colitis "I was diagnosed 3 years ago with severe ulcerative colitis. Asacol and prednisone worked at first, but after each outbreak, the medicines seemed less effective. My last attack left me under 100 lbs, severely anemic, and in enough pain that I needed to be kept in a continuous Dilaudid-induced daze. So many people have told me how terrible Remicade is and that I just need to, 'find the right diet.' If diet works for you, great! Remicade was the only thing that worked for me. The cons: it's expensive, but luckily my insurance covers it. It's inconvenient to go to the hospital every 6 weeks. I haven't noticed any side effects except hair loss at first, but now my hair is growing back. I've been told that the hair loss could also have been from all the weight loss."

• Vin...
• June 2, 2023

Infliximab for Crohn's Disease "My experience with Inflectra started pretty well. I was able to eat the foods I 'wanted' to eat, keeping my inflammation to a minimum. It started to go downhill after a year, weirdly, it wasn’t my Crohn's that was causing the problems. I started to notice delayed healing in my injuries. I talked to my doctor, and he claimed it was because I was aging. I was 25 years old, so to me, this didn’t make sense because I should be in my prime. Next, I started to notice hair falling out of my head, this wasn’t thinning or male pattern baldness, this was alopecia areata. I talked to my doctor, and he said this wasn’t because of the medication, he claimed it was normal for people with Crohn's to get this type of condition… I’ve had Crohn's at this point for 11 years of my life, and even during my worst flare-up and my worst point of being malnourished and underweight, I've NEVER experienced hair loss. Since stopping meds, I’ve noticed hair regrowth."

• mom...
• Taken for 1 to 6 months
• March 29, 2013

Infliximab for Ulcerative Colitis "I was diagnosed with ulcerative colitis in Nov. They thought they had it under control, so after being in the hospital for three weeks, I went home for two and almost died! I went back and stayed for over a month. The docs were trying everything with no answers, then they told me about Remicade and said it was for Crohn's disease, but we could try it out and see because it was my last hope. I really was happy to see that it was working, and in the first of Jan, I went home! I have had a kidney stone because of it, and it has acted up, which made docs think it was either my appendix or diverticulitis. I still take it every 8 weeks through I.V., but the only other problem that I'm experiencing is hair loss now, and I don't know if it's the Remicade."

• Ant...
• Taken for 1 to 2 years
• June 21, 2023

Infliximab for Crohn's Disease "Inflectra helped me manage my Crohn’s after prednisone. Soon after starting, I developed an anal fistula. I continued my treatment, then I noticed a pimple on my nose that wouldn’t go away. Since these symptoms weren’t a huge deal, I continued my treatment, waiting on a dermatologist to check for skin cancer. Throughout treatment, I noticed my hair thinning. I thought nothing of it until it stopped growing back. I’ve also developed alopecia areata during treatment with Pfizer’s Inflectra. I wanted to give this medication 2 or 3 out of 10 because it worked at first, but I don’t think a few years of no symptoms is worth what I’m going through now. I would appreciate it if we stop re-creating bio-similar meds to save money for insurance companies and higher profits for big pharma."

• 53C...
• Taken for 1 to 6 months
• January 19, 2017

Infliximab for Ulcerative Colitis "After losing a substantial amount of weight and blood, in the hospital for a week, two transfusions. Diagnosed as pan colitis / ulcerative colitis. 60 mg prednisone and the bleeding stopped at day 5. I returned home and was pressured by my GI to accept Remicade. I was skeptical but sold myself on the fact of the huge numbers of folks it helps. After two successful infusions, I was set up for my third, of which I experienced an allergic reaction in this order: itchy palms, itchy feet, itchy everywhere, needed bowel movement, almost fainting, fever, chills, and tightening of throat. Once home, extreme right leg pain, hand joint pain, loss of hair. (Serum sickness) now on balsalazide, cautious diet and cannabis nightly & 6 months no issues."

• BCD...
• Taken for 1 to 2 years
• November 24, 2020

Infliximab for Psoriatic Arthritis "At 67 years old, I have been using Remicade for 20 months for psoriatic arthritis. For the first year, I felt good except for being tired, but all my psoriasis cleared up completely. Then I needed some medical work, which delayed my infusion another 6 weeks. My body started having major pains, which migrated to different places every few days. I could barely walk, then my shoulders hurt so bad I couldn’t sleep in bed or get out of it. Then I couldn’t hold a spoon or raise my arms to get a cup from the cupboard. My wrist bones were throbbing, even pain meds didn’t help. Once I got my infusion, it went away in two days and I was back to normal. Then, just before my next infusion, it started again. Once I got the infusion, it went away. Some psoriasis has returned, and my hair has started to fall out, but very slowly. Very concerned my body is now hooked on it, and I hope to try something different."

• Car...
• Taken for 1 to 6 months
• August 10, 2021

Infliximab for Ulcerative Colitis "It worked the first time pretty well, my moderate to severe ulcerative colitis symptoms went away for the most part. I experienced flu-like symptoms after the infusion for two days. The second time, I experienced fatigue and joint pain for two to three days, and I could hardly move. I went to urgent care. The doctor said to stop taking it. My hair was also falling out by the bundles, as others mentioned. The doctor wants me to try Humira. Biologics have serious side effects, so I’ll take a risk and see what happens this time."

• rec...
• Taken for 1 to 6 months
• March 10, 2023

For Ulcerative Colitis "I had two doses, then the hospital postponed the third (due to it being Christmas). At Christmas, I suffered the worst case of UC ever, totally ruined the holiday for me, so I didn't return for the third dose in January. I wasn't aware of the side effects until my long hair started falling out, it was everywhere. It's now four months on, and my hair is slowly growing back thanks to hair vitamins. I still have UC, but it's manageable at the moment. I would advise anyone to check the side effects before taking the infusion. It doesn't cure your UC, merely holds it back, as shown, to my detriment, in my condition in December when I didn't have my 3rd dose. Too many health risks for me to want to try again."

• Sue...
• Taken for 1 to 6 months
• September 2, 2019

For Crohn's Disease, Active "Was given Remicade in the hospital to deal with a severe flare of Crohn's, then switched to Inflectra once discharged. No side effects other than some hair thinning to report. The hair thinning could also be from being so sick in the hospital, my hairdresser says she sees new growth coming in. Otherwise, I feel great on this drug and hope it continues to work to control my IBD for a long time to come."