These are people's experiences with the drug Remicade. I had my infusion in the middle of October. I had a headache during the 2-3 hr. infusion. I have Crohn's without fistulas at this time. I have not had a noticeable response to the medication. I am still taking prednisone and Pentasa and the doctor is wanting to talk about possible surgery sometime after the New year due to a stricture and active disease. So at this time I would have to say I am disappointed at the results. I have listed other people's responses to the drug but made a point of leaving out last names to protect their privacy.
Stephen

Hi stephen
I too had my first infusion 3 weeks ago. I am just now seeing an improvement. I will get another infusion in a few weeks. I am an endoscopy nurse and I really did a lot of research before I received the drug. Feel free to write and ask me about Remicade and my experience with it. I look forward to hearing from you
Holly

I saw your message on the Crohn's board about you taking the Remicade. I sure hope you had good results with it. I had the infusion about three weeks ago, and have noticed no change. In fact my colonoscopy last week showed more sore spots than before. The doctor's suggestion was surgery, so I am scheduled to see the surgeon in two weeks. It appears the Crohn's is located in a 6-8" area, so there may be only a small amount to remove. In any case I am not looking forward to having that done, although getting some relief from the persistent abdominal pain wil be nice.

Hope you have better results with the Remicade.
Terry

I had the Remicade infusion on 10/7 for severe Crohn's flare without fistulas. I noticed no side effects during the infusion, but about 6 hours later I suddenly felt like I had been hit by a Mack truck. Every joint in my body felt like it was on fire. I could not get comfortable no matter what I did. I was really writhing in pain and it lasted for about an hour....then no problems since.

Unfortunately I feel I had absolutely no benefit from the drug - but I think my intestines were too far "gone" by the time I received it. After waiting for approximately 5-6 weeks, while also on high doses of prednisone and having been started on Methotrexate injections, I ended up having a resection on 11/18. I only had 7" of small bowel removed - and that section was not inflamed but severely strictured from the disease itself. No amount of or medication would have corrected that. so I think that the Remicade might be more helpful to people who are experiencing problems with intestinal inflammation, and it sounds like it helps a lot with fistulas, also for people who are experiencing "moderate" flares - less severe than mine was by the time I received it. According to my surgeon, for now all of my problem area was removed, so they are not planning on my getting a second dose at present. (There is very little data available on Remicade's ability to prevent recurrence, so my GI says he will NOT re-treat me right now.)

Hope this was helpful to you. Feel free to e-mail me directly if you need additional info.
Wishing you good health,
Lea Ann

I had my second infusion on November 23rd and expect my third on December 21st.

The first infusion: Side effects: Headache 1st day, Nausea - 2nd and 3rd day, Sore throat - starting the 3rd day and hasn't stopped to date.

Noticed: My fistulas have stopped draining, and do not hurt at all. This response was within 24 hrs. Did not go to the bathroom for 24 hrs. after infusion. Increase in urinating tho. Felt great the 1st 24 hrs afterwards, and then the next 24 were a little tough. Then back to feeling pretty good. Not great but better.

2nd Infusion: Side effects: Throat still very sore, headache for the 2nd day and 3rd, and extremely sleepy during and after infusion. I have noticed I get more tired easier. Appettite seemed to increase slightly after a week or so.

Fistulas still not draining and closing, not as much joint pains, and very little back pain like I had before. Bowels are various, sometimes I don't go all day, and then the next day I go several (but not as much as I used to) times a day. Last week one night I was in such pain, I had not had a BMm for about 20 hrs or so and I was constipated. I was in horrid pain for about 1--1/2 hrs in the middle of the night, and then finally went and had watery stools by the end. Didn't go again for 20 hrs or so. Did not like that at all. But I've been better since. Thought I was getting a blockage it hurt so bad. (Appettite sems to have gone back to normal for me.)

As a whole, I feel better and have more energy for things like cleaning my house, when I didn't have it before. Sleepy, but more energy. I even started to workout again. Something I couldn't do before. Haven't been able to "workout" for a long time. And the body shows it. I was losing weight before, got off pred., and noticed it has stopped. I don't know if I am at a plateau or the Remicade has made a difference.

Would I recommend it, or do it again: yeah.
Hope this helps and wasn't too graphic or bothers anyone. Best of luck to all.
Cassie

Before I began my Remicade treatments, I was ready for another hospitalization. I had very active Crohn's, the worst it has been in 12 years; fissures, fistulas, extreme abdominal pain, an inoperable stricture, unable to eat well for 2 years, etc. I was waking at 10am and back in bed at 3pm for the day. Medications were no longer working (6-MP, prednisone, Pentasa, etc.) and for the first time I was taking pain medication to get through the day. Of course, I was living on the toilet and leaving the house was nearly impossible. Remicade was my last hope.

On Jan. 22 I received my first infusion. I had no reaction to the infusion, but the response was phenomenal. That day I was very tired and the next day I had intestinal pains that I compared with burn victim's skin being scraped (probably not as painful but as therapeutic). The following day, my fissures, fistulas, and pain were gone. Of course, the stricture is still there but with the reduction in swelling it isn't as big a problem. AND ONLY ONE BOWL MOVEMENT A DAY!

My second infusion was Feb. 5th. Again, I had no reaction to the infusion. I did have intestinal pain again, but not as bad, and a pretty good headache for 2 days. My disease seems to continue to improve and I have more energy than ever. My next treatment will be Mar. 5th.

Numerically speaking:
I went from 10 to 15 bowl movements to ONE a day!
My pain level was 10+ and now its 0.
My quality of life was 0 and now its 10000000!

I have my life back!
Good Luck to all.

Cristine

I am a white male, 47 years old. I was diagnosed with Crohn's Disease in 1976. I entered the hospital after months of abdominal pain episodes and massive loss of weight. I lost from 165 lbs. down to 115 lbs. While sitting at the admitting desk doing paperwork for my admission to the hospital. I felt very faint and was immediately taken to a room. My nutrition levels had dropped so severely that most didn't register on the tests. I slept for 3 days only waking for x-rays and tests. The diagnosis was made by a specialist in Nashville, TN at the Vanderbilt Hospital's gastrology department by Dr. George Avant. I was put on Prednisone immediately 40 milligrams per day for about 6 weeks then tapered off 5 milligrams per week until reaching 0. I was then placed on Azulfidene. This helped me manage my disease for 11 more years.

The 11th year brought bowel resection which resulted in the removal of 4 feet of small intestine and 8 inches of my colon. The surgery took place on January 23, 1987. I didn't have another flare up until September of 1997 and have had trouble ever since. I have had 3 hospital stays since September of 1997. I have had two Remicade treatments. The first seemed to have little or no effect. Two weeks later I received the second during a hospital stay. This one has stayed my Disease to the present day. I am still experiencing some severe cramping and pain periodically. However, the third Remicade treatment will be held off until it is absolutely necessary.

Warren Williams

I am 23 years old and last August I began to get very sick. I went to the doctor and was eventually diagnosed with Ulcerative Colitis, I continued to go down hill and I eventually ended up in our local hospital. I had a major attack one of the nights that I was there and I was sent to the Mayo Clinic the next day. While I was at the Mayo Clinic I was rediagnosed with Refractory Crohn's Disease. I was on 60mg of prednisone and several other medications. They were ready to send me home and took me off of the IV steroids and I immediately had another attack. They decided that I would be a prime candidate for Remicade. I received it on a Tuesday and I immediately felt better. I experienced no side effects and I was able to leave the hospital 3 days later. I received that first dose on December 8th and I received another dose from the University of Michigan on January 26-again I experienced no side effects and saw immediate results. My doctor has now decided that I should get the infusions every 8 weeks because of a recent study and because I respond favorably to it. I received my third dose on May 17th and I am scheduled for my next one on July 13th. I think that I would have had to have surgery if I hadn't received the Remicade-It gave me back somewhat of the life that I had before.

Amber

For all Chrons' patients: My daughter has had Chrons disease for the past 14 years. She has lived in hell with draining fistula's pain, absesses, blockage of the small bowel, etc. She has just had her third infusion of Remicade, the fistulas have stopped draining, she feels a little stronger and we hope it gets better. Date of infusion June 8, 1999. I will keep you posted.

G-d Bless All

To whom it may concern,
If there is any other Crohns sufferers with the irritating fistulas I have some good news for you! Ask your Do. about Remicade, It is a fairly new drug (given by infusion) that will dramatically bring an end to the ups and downs of the fistula(s). My treatment started about 6 wk. ago w/ my first infusion then again 2wks later and a follow up in three wk. wow! this stuff is great, after the first IV I noticed that the fist. was going away and was no longer self conscience about it, all the swelling up and down went away. (I had mine in the crotch). As far as Crohns no diff. still pain (but also have diverticulitise). reduced bowel movement from 10 to 2 daily but I credit the Lo- Cholist for that. other than that I'm real happy. Remicade isn't cheap ($500/per dose) and I had three within two months. the relief was worth it. if I didn't have insurance I would have still done the treatment! I could include my entire history of Crohns,drugs, how it effects your life, etc. just ask! Rudy@net-nw.com See ya hope, I helped a little.
Mike

Hello, My name is Jackie. I have been diagonosed with Crohns in May of 1998. I just finished college and started my first teaching job. I thought the stress of the change was the reason that I was getting sick. I had been going to the doctor for several years before I was treated. The signs would come and go in college, so I just felt that it was stress. Looking back there was signs. Such as taking anti-diarria medication before I went out. The doctor felt that it was wonderful that I was losing weight and recomended me to see a counselor. I did go see a counselor, it helped my out look, but it did not help me physically. The counselor felt that it was something else, than just stress releated. She was right, she even came and saw me in the hospital. I did keep on seeing her for a couple of months after being diagnoised. I feel that has made a lot of difference in my outlook of having Crohns. I have taken remicade several times. The first time was back in Jan. 99. It worked for several months. I would have told you it was the wonder drug, but it was not. I had three more infusions in May of 99. The doctor felt that a serious of infusions would make a bigger difference. i knew the last infusion that it was wrong for me, but i did not listen to my inner voice. In july, I was diagonised with lupus syndrome. The doctor appolized for giving me the medication, because he did not know about the side effects. He said the side effects were not showing up for six months or longer from the first infussion. The pain that I suffered it was worst than the chrones. I had severe Crohns and other health problems. I would not recomend remicade to people. It is the miracle drug, but no one is talking about the side effects of this drug.

I am a 36 yr old female diagnosed with Crohns in 1994. I have been in the hospital several times and have had a fistula problem for over a year. I was treated for the first time with Remicade last week and since then things have changed dramatically. My gut cramps and voiding problems have gone away as has the joint pain. My fistulae have begun to heal and my back is no longer swolen and painful. I had no notieacble side effects from the infusion except for generally feeling fatigued and some abdominal pain. Today - almost a week later I feel like a new person - more energy, less pain. I don't know if I will have to have the next two infusions but am pleased with the results of the first.
Unsigned

In response to your survey on remicade I was given remicade at the first of the year, and i can only say good things. I noticed a change as soon as the next day, within a week i was back to my normal self. It was very expensive but it worked well. Unfornatley, i am again going threw some more problem with Crohn's however my doctor is trying some other drug before remicade.
Jake

Crohns since 1981. Nothing has helped. Took first infusion of Remicade in August of 99. No problems during infusion and felt better immediately. Starting losing weight again, but still felt ok. Took another infusion this month. Not the dramatic improvement as before, but do feel better. Probably because I wasn't so far down this time.

Jack

My wife is 25 years old and has had Crohn's for 23 years. She recently underwent the Remicade infusion in December 1999. She showed good results from the infusion at first. She said that she felt better almost immediately. The infusion lasted for 6 weeks. In that period of time she was on 30 mg of prednisone and tapering down by 5 mg a week. She went back after 6 weeks for another infusion because there were signs of the flare up acting up and the pain returning. The second infusion lasted only 2-3 weeks before the pain and diarrhea came back. All patients react differently to the drug. We felt as though the drug was more of a band-aid and being used as a maintenance drug. We were looking for something with a longer remission time. She currently is on TPN and will be for the next 3-6 months. She had a 10 year remission with the TPN treatment when she was younger. The doctors that we were working with were located at the IBD center at Cedar-Sinai hospital in Los Angeles, CA.
Good Luck
JL

I am nearly 55, male, and have been dealing with Crohns for nearly 30 years. My symptoms are thankfully not the severe GI symptoms most experience--even when colon resection took place, my symptoms were more like fatigue, malaise, "fuzziness". All that seems more frequent, nearly constant as I am aging. So, after marginally positive, slow results from prednisone (peaked at 40 mg per day) last summer we tried Remicaid Oct. 99. I noticed improvement very soon, but it was slow and fairly steady. By January I was feeling terrific. By mid February, things were in decline again. So, we did another Remicaid infusion in mid March. Again, the improvement in superficial symptoms like hip pain and flushed face were quick. But, this time, after a month, I was declining again. Now, we are doing light prednisone again. Not much effect, yet. Remicaid did not make me ill in any way. At least so far. I am not sure, however, if I will take it again. That is a change, because that first treatment seemed so advantageous.. I am not so positive now it will help me.
Robb Menaul