User Reviews for Remicade to treat Crohn's Disease, Maintenance
Remicade has an average rating of 7.5 out of 10 from a total of 34 ratings for the treatment of Crohn's Disease, Maintenance. 62% of reviewers reported a positive effect, while 15% reported a negative effect.
“I have been on Remicade for nearly 4 years. Prior to that I had a variety of Crohn's issues including two surgeries for peri-anal fistulas, severe fatigue and lots of other fun stuff. I have been very lucky in that I have responded very well to the stuff and now most days I am fortunate enough to forget I have the disease. I was apprehensive about potential side effects but to date have experienced none. Prior to Remicade I took a few medications which did absolutely nothing but the Remicade had a pronounced effect within 24 hours of my first infusion. If you have Crohn's or Colitis would seriously consider an anti TNF blocker (haven't used any of the others) and stay the hell away from steroids.”
“My son has crohns and lost 30 lbs in 2.5 months. He took the medicine the doctor said to take but then he developed a fistula. I could tell he was in a lot of pain but yet he would not tell me what was going on. Both of us being very uneducated of this disease had no idea of the trouble he was headed towards. I made an appointment with the surgeon, the surgeon confirmed a fistula, and said he needed to take Remicade. My son has had four Remicade treatments and I have to say he was doing a lot better after the first treatment. It has been almost 9 months now and he is back to his average weight of 190. We are both afraid of the Remicade and we don't talk about it very much at all but I do have to admit it has given my son his life back.”
“I was diagnosed with Crohn's Disease when I was 26 years old and I am now 66 and have been on Remicade since 2008. I get my infusion every 8 weeks and for me it works for my Crohn's. I am somewhat tired after my infusion, sometimes the next day for about half the day. For me I can't imagine not being on it.”
“I have been dealing with Crohn's Disease for around ten years now and I was only properly diagnosed 2 yrs ago. I have received Remicade infusions every four weeks for the last year and it has made a very significant improvement in my everyday life. I no longer need to take pain meds to get through the day and my energy levels are closer to normal then they have been in years. Before Remicade it had got to the point where I could barely walk due to lower back and hip pain all related to Crohn's.”
“I am a 65 year old male and I acquired Crohn's Disease in 1965 at age 19. Remicade was approved by the FDA in August of 1998 and I was given my first dose the next month. Back then, they only administered 2 doses. I received the second dose 3 months after the first one. I have had no further doses since then. When I got the first dose I was in the midst of a flare, and I had an actively draining abdominal fistula. Three days after the first infusion the fistula closed of its own accord and I happily avoided yet another surgery for Crohn's (I have had over 20 surgeries). I have been SYMPTOM-FREE since the second infusion. I have more health issues now, but at least they are not Crohn's related.”
“Right after my daughters 13 yr. birthday, she had severe bleeding and was diagnosed with severe crohns and colitis. She has been on Remicade since January and has infusions every six weeks. She was on put on Prednisone in March since the infusions did not stop the bleeding alone. She is now being weened off the steroids, Thank God, and is on Remicade for the rest if ths year for now. She gets a boost of energy and after her infusions, but is very smart about what she can and cant eat. Prayers to u all going through this.”
“I have had Crohn's Disease for 18 years. I was extremely ill for the first 8 years. My doctor put me on Methotrexate, and I got better, but not "well". Then, Remicade came out. I have been getting infusions every 8 weeks for over 7 years, and it has saved my life. I will say, though, that at one time they hoped to wean me off of the Methotrexate, but I started having flare-ups and the time between infusions was increased. Since I am back on the Methotrexate and Remicade, I have had no problems at all. Yes, I know my immune system is very weak, but I avoid anyone who is sick, and try to get enough rest when I can. This combination of drugs has worked for me and I hope I have helped someone out there! You may need something else with Remicade. ”
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“I have been on Remicade since I was 7 years old when I developed crohns disease, I am 26 years old this year. For the past 19 years I have been receiving this medicine and it has kept me healthy. You do need to find a cycle be it 4, 6 or 8 weeks for your infusions. I do every 6 weeks and it keeps my symptoms minimal. The day of and the day after the infusion I feel like crap, tired, painful joints, but after that wears off I feel a lot better than before the infusion.”
“My son started Remicade at 13yrs. He has severe Crohns flare ups and this was a last resort aside from surgery for him. The Remicade treatment gave him few side effects. He didn't get any headaches/tiredness. And he didn't get sick easier like they said he would. When almost our whole house(7 of us) got the flu; m\Micah didn't. Micah just took his last dose 8 weeks ago after being on Remicade for over a year and a half. (Micah was on Lialda too) even when they used the amount of Remicade, Micah was still getting flare ups every other month or so. They tested his blood and found out he had antibodies to the Remicade, which means his body was attacking the Remicade and that's why it was only working right after the infusions.”
“This nightmare all started 9 years ago with an abcess. This turned into a fistula. The fistula went away after years then I developed another one on the opposite side. Then multiple fistulas. 10 surgeries later and now I have a fistula through the vagina. I finally changed Drs. My dr put me on remicade and methotraxate, and I am finally seeing results. Extremely tired I could continuously sleep my life away. I haven't felt any inflamation for weeks. No pain pills for 4 weeks now. So cross my fingers this works.”
“I have been on this medication for 14 years now, and maintained remission without any meds. I also had 2 healthy babies while on Remicade. I was diagnosed with CD of my ilium at 20 years old. I had been on Pentasa and then Imuran. Imuran worked okay, but it hurt my stomach and I never felt truly "good". I was put on Remicade after my last blockage in 2006, and I have been in true remission ever since with Remicade alone. I am a little tired after my infusion for a day, but then I feel totally normal. My two kids had no side effects from using during pregnancy. They are now 6 and 3. I had 2 c-sections, with no complications. The only thing it affected, was that my kids couldn't get the Rotavirus vaccine, because it was a live vaccine. (No live vaccines until 6 months for Remicade babies). That vaccine is new and not critical. Remicade has a payment assistance program and they help with co-pays, regardless of income.”
“I am now 80 years old and was diagnosed with Crohn's about 3 years ago. Late in life, I know, but was misdiagnosed with IBS and put on mesalmine which only made me lose my appetite, lost so much energy that I could not walk 10 feet. Went to teaching hospital and was quickly suspected and diagnosed with Crohns. Shortly afterwards put on Remicade. Total remission, regained strength and bowel control within a week and appetite. At first on 8 weeks but noted tendency to some flare tendency toward the end so put on 6 weeks. Have had no problems and lead a "normal" life with wife, children and grandchildren now! Make sure I follow doctor's advise including all vaccinations he recommends. He does full blood work before every infusion. He is very quick to respond to any contacts or questions I make with him.”
“I am 37 and have had Crohn's since I was 18. Three surgeries of the terminal Ilieum. From 18 to 27 I was very very ill. The Remicade has basically helped me to have a normal life again. I feel great these days, but one gets to the point where you feel good and want to be medicine free. You hear horror stories of people getting off Remicade and getting galloping Crohn's disease coming back and then the Remicade doesn't work so well.”
“Ok I have had Crohn's disease for 15 years this December. I have maintained myself just fine with minor problems. Recently have learned my pain tolerance is so extreme I have been putting up with stuff shouldn't be for uncertain amount of time. Two questions from people with experience would help: 1. How is it going forward with these fistulas? Unheard of before last Wednesday and I have two forming or in process of. 2. I have limited options going forward and Remicade is seeming best course of action. How have people done with it long term it being an immune suppressant? I am knowledgeable about these things I am hoping to hear from people who have experience dealing with fistulas and taking Remicade. Thanks, Troy S.”
“I'm 32 and I've had crohns now for 14 years. Remicade was a god send but only for a limited time. I started off like everyone else with i. V every 8 weeks. Then after a couple of years it was wearing off faster so then every 6 weeks. Then every 4 weeks then it was back on the steroids along with the 4 week treatment. Well after 6-7 years on remicade it wasn't working anymore. I do recommend it because I would give anything right now to get those 6 years back because even though I was became immune to it I felt 20 times better then compared to now. Since the remicade nothing has worked for me since.”
“I am a 28 year old male and was diagnosed with Crohn's 6 years ago. I had a flare up with an abdominal aneurysm and lost approx 90 lbs. I was put on Remicade and it has saved my life. I have been on it every 8 weeks for about 4 years and have regained a healthy weight and my symptoms are at an all time low. My only complaints are that getting the treatment is time consuming and the cost is obscene if you don't have good insurance. However, despite all that, it truly has saved my life and I couldn't be happier with the actual results of the medication.”
“I've had Crohn's for 12 years and I'm 44 now. I believe my Crohn's was triggered or worsened by a doctor misdiagnosing my lower back/hip joint pain from Crohn's and prescribing heavy Ibuprofen. I tried Asacol, Imuran, and Pentasa, but always ended up taking prednisone to calm the symptoms. Every February I ended up with flare-ups. Doctor put me on Remicade 4 years ago and other than some swelling up in the hands initially and getting perma-colds occasionally, it has worked very well. Now my insurance is trying to force me to go to Humira. Doctor is fighting it, but we'll see how it goes. Hope this helps.”
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“I am a 29 year old male and have had Crohn's disease for 8 years. When I was going through college I became very ill and over a two year period of ups and downs lost 100 lbs. Only due to the grace of God I made it through college with a civil engineering degree. I was first put on all the typical drugs: Imuran, Pentasa, Asacol, Prednisone, B-12 injections. I received the Remicade initially only when I had flare ups. I watched my diet to a T (specific carbohydrate diet), but would still end up flaring up. For the past 6 years I have been on a maintenance dose of Remicade every 10 weeks and have done very well. I do have a goal to eventually get off the Remicade.”
“I am a 16 year old male, and was diagnosed with Crohn's disease when I was 8. I have only been on Remicade for about 8 months, but have not seen much of a difference. My energy has stayed the same, and I haven't grown any. Improvements have been that I don't have the morning cramps that I usually get, and my appetite has grown. I went from 135 pounds before the infusions to 145 pounds. I have a bloody nose at least three times a week, I now catch stomach viruses a lot easier now, and I feel dizzy/lightheaded often. Overall I guess it's working, I will do an update when I have been on the medicine longer.”
“My 14 yo had her first Remicade infusion a 10 days ago. After 8 days she had severe serum sickness. Her fever shot up to 106 and her blood pressure was really low. She spent 24 hrs in the PICU. It was very scared. Needless to say, she won't be able to take it again. We are hoping there will be no lasting effects but only time will tell. Her symptoms of serum sickness were: fever, chills, severe joint pain, hives all over, swollen hands, red eyes, and dry mouth.”
“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!”
“I was diagnosed with Crohn's Disease when I was 16 years old. I am now 47. Remicade has been a blessing. I am one of the very fortunate ones to have no real side effects. I have been on Remicade for at least 6 years. I am able to hold down an excellent job and enjoy being a wife and mother. I am grateful that I have a job with great benefits. I wish that the cost was not so outrageous so that others could benefit from this medicine. My son is on Humira and they have a program that decreases the cost significantly. Even with my insurance, they cover a large portion of my co-pay. All we can do is hope that the makers of Remicade will offer the same some day.”
“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!).”
“I was diagnosed in 2013 with ibs.. Then 2014 ibd....now Feb2016 with crohn's...tried a lot of meds nothing worked went to remicaid well it has been working but never lasts that long... By 5-6 wks I'm starting to flare... This time after load in doses they used me to 7.5 and that worked I got 6 wks out of it instead of 4 wks.... But this time it's bad started flare of belly 4 days ago... And now I can't 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....”
“I am 24 and I was diagnosed with Crohn's disease a year and a half ago now. I've been receiving this infusion for the past 12 months. The relief was brilliant bar constantly catching coughs, colds and flu's but it was worth it as I could lead a normal life again. My infusions were every 8 weeks and could take anything up to 4 hours but my remission time between infusions began to steadily decrease. I have now had my 9th infusion and receive them every 5 weeks. My body has grown an immunity to the drug and my doctor is changing me onto Humira as a last resort to avoid surgery. Hope this helps somebody.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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