Infliximab for Crohn's Disease, Maintenance User Reviews (Page 2)

• Gutsy
• June 15, 2013

Remicade (infliximab) "After resisting having read American Black Box warnings I was finally persuaded through my consultants actual experience with the medicine - that and having 6 operations/ colostomy and the disease still beating me. I was exhausted and unable to walk/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, Crohns, at two weekly 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 factor in starting my flare ups."

• Kwixo...
• Taken for 5 to 10 years
• April 13, 2018

Remicade (infliximab) "Six years of Remicade infusions so as to replace prior intake of Prednisone. Must say quite effective, HOWEVER, about 3 1/2 years into it got Shingles of the eye and subsequent post-herpetic neuralgia (and there's still some itching almost five years later). Then August of 2017 got cellulitis in the right arm, a very painful infection requiring a seven day stay in the hospital on antibiotics followed by a week long IV administration at home. Once I was better, I have stopped the Remicade and so long as I am enjoying the remission I'll never return to it. My GI doc has suggested Entyvio but I most likely wouldn't even do that. Heck, if it ain't broke don't fix it!( I don't wish to tamper with my immune system and bring about more disasters!)."

• Tatiana...
• July 6, 2015

Remicade (infliximab) "I suffer of Crohn's Disease about 2 years and took remicade for one now. At first i had headaches but now i just took remicade every 56 days and keeps me ok. I don't feel the syntons of disease and bacically i eat everything that i wish but i'm 29 so i'm always on diet to keep my body shape."

• A-Train
• July 3, 2008

Remicade (infliximab) "I am 22 years old and have had Crohn's disease since age 17. I can't take steriods of any type - makes me go crazy. Remicade is the best drug I've been on for my disease. It works great but has some bothering side effects for me but they are not bad enough to quit gettting this medication every 8 weeks at the hospital through I.V. It takes about 2 or 3 hours for the treatment to be over."

• J Yoder
• August 20, 2016

Remicade (infliximab) "I first had symptoms when I was 17 yrs old. Was not diagnosed until I was 25 during an exploratory surgery to find out what was wrong with me. I am now 67, have had three surgeries, 2 for blockages and a variety of meds.. This last surgery did not go well and my crohn's became worse. The doctor recommended I go on Remicade. Have had three treatments with no improvement, extremely exhausted. During my treatments I developed chest pains, had an angiogram, everything fine. Then became very short of breath, fever and got water on the heart from the procedure. Will be discussing this with the doctor and requesting I stop the treatments. I have not had a rewarding experience with Remicade. Not sure what my options are going forward."

• Mike
• Taken for 2 to 5 years
• March 30, 2019

"I have been having infliximab infusions for Crohn's for 2 years now and it has given me my life back. I’m am also still taking azothioprine as a precaution so that my body doesn’t build immunity to the infliximab. It took about 3-4 months for it to work. Prior to taking it I had suffered a particularly bad 2 year flare, lost 35kg, hospitalisation, brought my marriage to the brink and I was contemplating the unthinkable. I can’t help crying as I write this as I remember what it was like. Reaching that point, it was worth the potential risks with the hope of being normal again. As I enter my third year of infusions, I am aware that the drugs effectiveness can wear off and I am praying it doesn’t. I am very fortunate to live in country that covers the cost of the infusions which would otherwise be financially devastating. Best of luck to you all and I hope it can work as well for you as it has me."

• PENWE...
• April 25, 2009

Remicade (infliximab) "I was diagnosed with Crohn's disease ten years ago. I had a flare-up six months ago. I had a small bowel resection two months ago. So far I have had five transfusions. At first I felt a little faint and scared. Now it feels fine. I feel great and am in remission. I supplement my Remicade transfusions with 50 mg Imuran and B-12 shot monthly. I am very happy. I hope the good times last."

• Summe...
• October 30, 2008

Remicade (infliximab) "I am 23 years old and have had Crohn's since I was 19. I started Remicade about 6 months ago, and it's the only treatment that's worked so far. It is a bit time consuming, but it's better than taking 10 pills a day (or more) and more effective. I would recommend trying this after everything else fails. It feels good to be normal again."

• Paugi
• November 13, 2019

Remicade (infliximab) "After being diagnosed with Crohns, I took two (2) Remicade infusions I believe it was only two, (2) . My condition deteriorated quickly. I lost forty pounds (40), the last ten (10 pounds I lost took only ten (10) days. I had a Prometheus Study done and it showed no trace (0) of Remicade in my system, How is that possible? Has anyone else had this to happen?"

• Anonymous
• September 27, 2011

Remicade (infliximab) "I have been on Pentasa, prednisone and Prilosec. Was put in the hospital yesterday for a bad flare up now the doctor is going to start Remicade. I have only been sick since July but not getting any better. "

• Kyle
• Taken for 10 years or more
• January 14, 2022

Remicade (infliximab) "I have had Crohns for the past 17 years. Diagnosed at 21. They put me on remicade and pentasa right away. Worked so well at the time they thought they misdiagnosed me and they took me off everything. I was good for maybe 3-4 months and it came roaring back. 2 years battling with prednisone, imuran etc I finally got back on Remicade in 2008 and have been on for going on 14 years. Since the 2nd or 3rd infusion back in 2008 I've had Zero symptoms. No signs of Crohns at all. The only side effect is about 8-9 years ago I got scalp psoriasis and have battled it since. I see a specialist outside Boston who noted that although Remicade is also used to treat psoriasis it can cause about 5 percent of people taking it for other reasons to develop psoriasis. The immune system is a very complex thing for sure. I get remicade every 8 weeks. Doesn't make me tired or sore. Knock on wood. So if your reading this and have lost all hope, there is hope"

• Shorty
• Taken for 1 to 6 months
• May 14, 2020

Remicade (infliximab) "My Crohn's had flared up and I was put on Remicade. After I was 1st on Humira but had to take it on a very high dose. The side effects were too much. Now I'm on the 1st maintenance dose of Remicade. I wake up in pain from my Crohn's every night. Being put on the higher dose may help. But with the side effects, it's very hard to have a good quality of life. Had surgery in my 20's for it. Maybe that's the best option now. But will they do it?"

• Chronie
• Taken for 6 months to 1 year
• August 31, 2022

"Diagnosed with Crohn's a year ago, been on infliximab (Remicade) for seven months now. After my third or fourth infusion I started to really see improvement in my symptoms (two perianal fissures and a small fistula), which tracks with what I've learned about the drug. It takes time to both reduce ongoing inflammation, and to allow your body to heal from the damage that years of chronic inflammation causes. I no longer bleed on bowel movements, my stools are normal / regular for the first time in years and diarrhea is no longer a daily occurrence, and bowel movements no longer excruciatingly painful. Additionally, I no longer get the awful mouth ulcers I used to get in association with my Crohn's."

• danie...
• October 24, 2010

Remicade (infliximab) "It was great for my Crohn's Disease, but I got drug induced Lupus from the medication."

• chip...
• Taken for 1 to 2 years
• July 4, 2015

Remicade (infliximab) "All this has done was to make me fat, no change in crohns, very sick, 70% of side affects, still suffering now with dehydration. "

• Davef...
• Taken for less than 1 month
• July 15, 2017

Remicade (infliximab) "My 13 y/o had his first infusion. So far so good. No side effects."