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Reviews for Remicade to treat Crohn's Disease, Maintenance
Review by Tsavary:
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.
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.
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.
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.
15 users found this comment helpful.
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.
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.
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.
11 users found this comment helpful.
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.
17 users found this comment helpful.
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.
19 users found this comment helpful.
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.
27 users found this comment helpful.
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.
21 users found this comment helpful.
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.
21 users found this comment helpful.
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.
16 users found this comment helpful.
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.
14 users found this comment helpful.
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.
14 users found this comment helpful.
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.
25 users found this comment helpful.
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