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

• Gut...
• June 15, 2013

Infliximab "After resisting having read American Black Box warnings, I was finally persuaded through my consultant's actual experience with the medicine - that and having 6 operations, colostomy, and the disease still beating me. I was exhausted and unable to walk or 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, Crohn's, at two-week 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 a factor in starting my flare-ups."

• PEN...
• April 25, 2009

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 a B-12 shot monthly. I am very happy. I hope the good times last."

• Edn...
• Taken for 1 to 6 months
• May 2, 2015

Infliximab "I have received Remicade infusions to treat Crohn's. Felt bad right after the first infusion but was convinced by my physician to continue. I have also received Prolia by injection to treat osteoporosis. I decided to stop the Remicade after 3 infusions as I could feel no benefit and had felt very ill throughout. 6 months later, I was diagnosed with metastatic breast cancer - this is in spite of having annual mammograms. I can't help but think the Remicade is linked to the eruption and rapid spread of my cancer. Beware!"

• J Y...
• August 20, 2016

Infliximab "I first had symptoms when I was 17 years 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, two 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."

• Anonymous
• September 6, 2016

Infliximab "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."

• Mik...
• 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 also still taking azathioprine 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 35 kg, hospitalization, 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 drug's effectiveness can wear off, and I am praying it doesn’t. I am very fortunate to live in a 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 for me."

• Tat...
• July 6, 2015

Infliximab "I have suffered from Crohn's disease for about 2 years and took Remicade for one now. At first, I had headaches, but now I just take Remicade every 56 days and it keeps me okay. I don't feel the symptoms of the disease, and basically, I eat everything that I wish, but I'm 29, so I'm always on a diet to keep my body shape."

• Sum...
• October 30, 2008

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."

• Pau...
• November 13, 2019

Infliximab "After being diagnosed with Crohn's, 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 happen?"

• Kyl...
• Taken for 10 years or more
• January 14, 2022

Infliximab "I have had Crohn's 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. Two years battling with prednisone, Imuran, etc., I finally got back on Remicade in 2008 and have been on it for going on 14 years. Since the second or third infusion back in 2008, I've had zero symptoms. No signs of Crohn's 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 you're reading this and have lost all hope, there is hope."

• Anonymous
• September 27, 2011

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."

• Sho...
• Taken for 1 to 6 months
• May 14, 2020

Infliximab "My Crohn's had flared up, and I was put on Remicade. After, I was first on Humira but had to take it at a very high dose. The side effects were too much. Now I'm on the first 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 20s for it. Maybe that's the best option now. But will they do it?"

• Chr...
• 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 are no longer excruciatingly painful. Additionally, I no longer get the awful mouth ulcers I used to get in association with my Crohn's."

• dan...
• October 24, 2010

Infliximab "It was great for my Crohn's disease, but I got drug-induced lupus from the medication."

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

Infliximab "All this has done was to make me fat, no change in Crohn's, very sick, 70% of side effects, still suffering now with dehydration."

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

Infliximab "My 13 y/o had his first infusion. So far, so good. No side effects."