Infliximab and Rash: What Users Say

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

Infliximab 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

Infliximab 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

Infliximab 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

Infliximab 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!"

• Par...
• August 1, 2020

Infliximab for Crohn's Disease "I have been living with Crohn’s for 20 years. I was in remission with Remicade for 7 years, but after I started having flare-ups, I switched to Humira, which didn’t work for me. I ended up with an ostomy. About a couple of months ago, I started getting a skin rash, and blood work showed signs of active Crohn's. I asked my doctor to try Remicade again, but my doctor recommended an alternative, Inflectra. I got the first injection 2 weeks ago. My blood pressure dropped to the point I couldn’t drive home. I was very tired the next day, but felt okay after that. A couple of nights ago, I had to go to the ER. Severe joint pain, sore throat, swelling in my face and hands, and fever. In the matter of 3 hours, I was in so much pain I couldn’t move. Worst experience ever. For insurance companies, it costs way less than Remicade, but I am not putting myself at risk and getting the second injection."

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

Infliximab 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

Infliximab 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."

• 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."

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

Infliximab 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."

• Ran...
• Taken for 1 to 6 months
• November 5, 2020

For Ulcerative Colitis, Maintenance "The first infliximab infusion was fine, but I was also on prednisone. Second infusion, I had a bad allergic reaction. It helped the UC but caused a bad rash all over my body."