Remicade and Pain: What Users Say

• Too...
• Taken for 1 to 6 months
• April 30, 2020

For Ulcerative Colitis "This medication Remicade made me in constant pain. I slept for two months, 20 hours a day. I felt very depressed. My body was in pain everywhere, and I was covered in a rash. Parts of my body have permanent nerve damage months after I got off it. My specialist told me it is hard to diagnose nerve damage, as if that matters. Is everyone a liar till a doctor proves it? This same specialist wanted me to go back on it. I said I really didn't want to go through that again. The specialist would not leave it alone. I mentioned COVID-19 to him, and he said it won't make a difference if I am off Remicade or not. Oh okay, I guess all these tests were for nothing then? Now I am without a specialist. He then talked down about me to my family doctor, saying I am refusing treatment. Now my family doctor is treating me like I am just wasting people's time. I suspect this is exactly how people become homeless. Do I have no rights? People should consider their specialist might value money more than your life."

• Too...
• Taken for 1 to 6 months
• April 30, 2020

For Ulcerative Colitis "This medication Remicade made me in constant pain. I slept for two months, 20 hours a day. I felt very depressed. My body was in pain everywhere, and I was covered in a rash. Parts of my body have permanent nerve damage months after I got off it. My specialist told me it is hard to diagnose nerve damage, as if that matters. Is everyone a liar till a doctor proves it? This same specialist wanted me to go back on it. I said I really didn't want to go through that again. The specialist would not leave it alone. I mentioned COVID-19 to him, and he said it won't make a difference if I am off Remicade or not. Oh okay, I guess all these tests were for nothing then? Now I am without a specialist. He then talked down about me to my family doctor, saying I am refusing treatment. Now my family doctor is treating me like I am just wasting people's time. I suspect this is exactly how people become homeless. Do I have no rights? People should consider their specialist might value money more than your life."

• Dee...
• Taken for 1 to 6 months
• November 10, 2014

For Rheumatoid Arthritis "Horrible joint swelling/pain, fatigue like none other. Diagnosed with rheumatoid arthritis, Dr. figures I probably have had this 15 years, a few replacements along the way. Took MAJOR flare to be diagnosed. Loads of joint damage all over. Started on Remicade, nervous. Cannot take methotrexate due to kidney disease. Third dose dr increased dose, 5 days feeling worn then MIRACLE! NO swelling, pain, best I have been in years, no fatigue. Hoping it continues with each infusion. In tears of joy everyday with my quality of life."

• Anonymous
• February 20, 2012

For Rheumatoid Arthritis "I love it! I'm 16 and have been treated for five years. Methotrexate made me sick and Enbrel, via EpiPen, was more uncomfortable than my arthritis. Remicade is pain-free and the time inconvenience is worth it."

• Eai...
• Taken for 2 to 5 years
• May 10, 2016

For Ulcerative Colitis "When my daughter was 13, she had a sudden and severe onset of UC. She was hospitalized for 2 weeks (had constant pain, couldn't eat, and was going to the bathroom 15-20 times a day). She was given IV steroids/medications with no improvement of symptoms. The day after receiving Remicade, her pain was gone, and she wanted to eat. She went into complete remission and has had no symptoms for the last 4 years. She does Remicade infusions every 10 weeks. It has been her wonder drug! But my other daughter was diagnosed with Crohn's a year later at 11. Her onset was slower, and she was put on various medications first. Remicade worked for her for several months but then became less effective, even with increasing dose and frequency, so she was switched to Humira."

• Nic...
• January 7, 2017

For Rheumatoid Arthritis "I was diagnosed with RA in 2004 and began steroids and methotrexate. Next, I started Enbrel for approximately 8 months, but the citric acid in the Enbrel was unbearable. Then I began Remicade infusions. I started out nine years ago every 6 weeks. I'm now on 700 mg every four weeks and weekly injections of methotrexate, but wouldn't change a thing. I still have stiffness here or there, but the fatigue and pain I used to experience are gone, and I live a full and happy life. It's been such a blessing to me."

• Wel...
• Taken for 2 to 5 years
• August 17, 2017

For Rheumatoid Arthritis "I was on Enbrel for nearly 9 years before it stopped working, and Humira didn't work at all for me. I started Remicade nearly 4 years ago, my doctor started me out getting an infusion every 8 weeks, and over the first year, he brought it down to every 4 weeks. It's been working great, but after the first 2 years, my knees started bothering me. But after some injections at my orthopedist, they have been under control. Now both my elbows are really bothering me, at first it was when I woke up, but now it's 24/7. I go in for my next infusion next week and will talk to my rheumatologist about the pain. I was curious to see if anyone else has had knee or elbow pain after being on Remicade."

• 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."

• Lul...
• Taken for 1 to 6 months
• September 14, 2018

For Psoriatic Arthritis "I feel very tired all the time, am housebound due to fatigue and pain. I also have ankylosing spondylitis. I’m due for my third 8-week treatment next week. It also makes my moods labile in the first week after treatment. I’m 62 years old, unable to work. I’m hoping for things to get better soon."

• Goo...
• Taken for 1 to 6 months
• August 17, 2020

For Ankylosing Spondylitis "I went on Remicade after Humira not working for my Ankylosing Spondylitis (AS). I am 60 years old. I was diagnosed with AS in 2017. I had the symptoms for many years before getting diagnosed correctly. Many women are misdiagnosed with fibromyalgia. I had the Remicade infusions due to Medicare not covering any of the other biologics. I had 4 infusions of the drug. Each time I felt unwell 3-4 days after getting the infusion. After the last infusion, the bottoms of my feet became seriously red, sore, painful, and peeling. The doctor said it was a reaction from the Remicade. Then I started to have eczema on both of my arms and feet. I am still struggling with side effects from this drug. Now I have the AS symptoms along with not feeling well at all. I would not recommend taking this drug. It's a biological med and my elderly body obviously could not handle it. Never would I take this drug again!"

• Goo...
• Taken for 1 to 6 months
• August 17, 2020

For Ankylosing Spondylitis "I went on Remicade after Humira not working for my Ankylosing Spondylitis (AS). I am 60 years old. I was diagnosed with AS in 2017. I had the symptoms for many years before getting diagnosed correctly. Many women are misdiagnosed with fibromyalgia. I had the Remicade infusions due to Medicare not covering any of the other biologics. I had 4 infusions of the drug. Each time I felt unwell 3-4 days after getting the infusion. After the last infusion, the bottoms of my feet became seriously red, sore, painful, and peeling. The doctor said it was a reaction from the Remicade. Then I started to have eczema on both of my arms and feet. I am still struggling with side effects from this drug. Now I have the AS symptoms along with not feeling well at all. I would not recommend taking this drug. It's a biological med and my elderly body obviously could not handle it. Never would I take this drug again!"

• Bun...
• Taken for less than 1 month
• May 30, 2018

For Crohn's Disease "Got this med two times. The first time I used it, I got just a little cough, but a couple of days later, I couldn't walk at all, and the pain was really bad. Went to the hospital, nothing found. The pain eased, so I tried another time, and my airways closed up. After a couple of years after this, my hips still hurt, can't get up from bed or chair every time by myself. This shouldn't be used."

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

For Ankylosing Spondylitis "I have ankylosing spondylitis. I was given Remicade IV infusion three times. It helped a little with the stiffness in my SI joints and lower back. After each infusion, I felt like I had the flu for about four days. After the third infusion, the bottoms of my feet became red with a rash and were burning, painful, and itching. Now, three weeks later, both of the bottoms of my feet are numb. No one can tell me anything except perhaps it's a side effect of getting 'chemotherapy.' I will not take it again!"

• Dan...
• April 2, 2016

For Crohn's Disease "After a year or more on totally ineffective Humira, I was put on Remicade. It has been effective for the most part. I am on the max dosage every 4 weeks. About 4 to 5 days before my infusion, I develop my typical Crohn's symptoms, which mostly involve pain. I had one blood test that indicated I was metabolizing the medication more quickly than normal. If this problem persists, I will be tested again to see if I have developed antibodies to the drug. Besides Humira being a total bust, I react with high fever and chills to 6-MP. Prior to the Humira, I had a resection of a foot of my ileum. I don't have any side effects from the Remicade, just the issue I mentioned."

• Anonymous
• October 10, 2011

For Crohn's Disease, Active "Remicade was positive for me for over 8 years. Would close up my fistulas for up to 7 weeks before the next infusion, but after 8 years, all my joints and muscles were painful. Diagnosed with drug-induced lupus. Stopped Remicade, looking for another way out."

• Anonymous
• Taken for 5 to 10 years
• January 25, 2025

For Ankylosing Spondylitis "I have ankylosing spondylitis. I started on Remicade about 7 years ago, and it has worked 100 percent. It even worked so well that after still feeling 100 percent 8 weeks later, when I was due for my next infusion, I would cancel my infusion date because I thought I was cured. But around the 10 or 11-week time frame, I was back in pain. But within 1 day of getting my next infusion, I was back to 100 percent. I have been receiving Remicade for 8 years now."

• New...
• July 3, 2013

For Ankylosing Spondylitis "Have it every 6 weeks, but after 5 weeks, I get very sore just below my shoulders, sometimes left, sometimes right, sometimes center. I go on Tylenol when I can't take the pain."