Remicade and Rash: 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."

• 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."

• Ash...
• Taken for 6 months to 1 year
• December 12, 2017

For Rheumatoid Arthritis "I was diagnosed with Inflammatory Arthritis (RA) in September of 2015 (29 years old). First, I was on Plaquenil, which never seemed to help, and on top of it, I developed a terrible hive rash, which went away once I stopped taking it. Next, I tried Humira. That worked great for about 6 months before my symptoms came back. Now I'm on Remicade and have been for almost a year now. It works great. I get my infusion every 8 weeks and have NO SYMPTOMS!! I love Remicade. It gave me my life back. I am slightly concerned though because I've developed another rash that won't seem to go away after 2 months of dealing with it, trying steroids, etc., etc. Cross your fingers it's not Remicade causing my rash. I'll cry!"

• Anonymous
• December 6, 2019

For Psoriatic Arthritis "Used for psoriatic arthritis, the 1st of 3 IV infusions that work great to begin with! From joints becoming near normal to a bounce in my step - then the canker sores are the 1st sign I'm flaring! I went through 2 severe reactions before realizing it was the drug, which required immediate emergency attention as it affected my breathing, had hives, and 2 weeks of misery. If only my body didn't find ways to subvert all the docs do to try & help it! It's frustrating!"

• 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!"

• Not...
• September 17, 2015

For Ulcerative Colitis "I was given Remicade while in the hospital. They premedicated me with Tylenol and Benadryl. After the Benadryl wore off, I broke out with severe hives from head to toe. I took Benadryl and then Zyrtec for ten days and neither helped the hives much. Thankfully, they finally went away. Horrible experience. I looked like I had a plague."

• Chr...
• Taken for less than 1 month
• February 23, 2021

For Ankylosing Spondylitis "After 8 days of my first infusion, I woke up in the middle of the night itching from head to toe with hives all over my head, and both my lips swollen, looking like I had my lips injected. Needless to say, I won’t be taking it again. On a side note, I felt worse after the infusion, like I had the flu, and my hands and feet felt like someone smashed them with a sledgehammer."