HealingWell
Search Close Search
☰

Remicade success stories....

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/29/2008 4:05 AM (GMT 0)
Hey guys, I was diagnosed with UC in Aug 07 during my last trimester of pregnancy flaring beyond the point of belief, I delivered at 32 wks via emergency C-sect. with a 3lb8oz boy. The most horrific thing that has ever happened to me I thought I was going to die. I was hospitalized for 40 days on 90mg of prednisone went freaking crazy on it. Oh by the way my OBGYN told me over and over month after month I just had hemorrhoids. If he would have listened to me I would have been diagnosed during the first part of my 2nd trimester and would have been able to take Remicade the rest of of my pregnancy and have my UC in remission and carried my son to term. In addition I was also diagnosed with ITP a blood platelet disorder which also is incurable. I started Remicade in Dec. 07, 5 months after my diagnosis. I have had 6 tx and it has worked wonders. I almost feel normal. I have talked to several people who have been on Remicade for years and are doing great. I worry though what exactly are the long term effects. I know the possible side effects and statistics of cancer etc. I had my hematologist draw a baseline cancer panel on me. The results were normal. I am going to be sure he screens me yearly. I am scared about what the future holds for me. It is so hard dealing with all this the flares, Dr visits, meds and more meds, aches and pains in my legs, copays and more more copays. I just feel so alone even though I have a wonderful husband and family. I feel like I am wearing everyone out. I can't work yet. Afraid I will have a flare eventhough the Remicade has put me in remission, I still don't trust it 100%. I stay at home with our 2 boys a 7yr old and the baby who is now 8 months old and doing GREAT. Right now my life is good, I try to stay positive. I have faith, but I can't help worrying.

Thanks for listening......
Teresa
Posted 5/29/2008 3:43 PM (GMT 0)

Dear Pickle, Ben's mom, and Theresa,   First, thanks for all the tips, and thanks for the number of Centocor, Ben's mom.  Theresa,  you poor girl.  How strong a person you must be to deal with all you have.  My hat is off to you.  I  also called NIH (National Institute of Health) because they do studies where they need volunteers.  THey happen to be looking for volunteers for "Remicade clinical trials"  and I am going to inform my son that he could go there and get all the tests and treatments for free!  Plus they monitor you very closely. We live in Northern Va. and they are about 20 miles away in Maryland, so not a long trip.  I talked to one of the liason's yesterday, and she said even though it isn't listed on the web yet, they are doing studies on Remidade and also different studies including interferon injections and other immune studies.  So, for my son that is the place to go.  (I hope)  Maybe they will find a cure for this terrible affliction.  Anyway, good luck to you all.   Carol, another caring mom.

Posted 6/3/2008 7:39 PM (GMT 0)
Hi, I have started Remicade and will be having my third infusion on Friday. I had a bad flare before I started this and it has HELPed alottttt. I am in remission now however I have been avoiding fruits and vegetables and am on a low residual diet. I have read alot about avoiding sugar and was wondering if others are eating everything and just avoiding foods that cause issues.
Posted 6/3/2008 7:48 PM (GMT 0)
Princess; I eat most anything but there are some foods that I can't tolerate and most of those food were ones I couldn't eat even before I was dx'd. I stay away from fried foods, and things with artificial sweeteners; and try and eat as many whole foods as possible. I think I tolerate apples better than any fruit, but as I always say, everyone is different! :-)
Posted 6/3/2008 8:45 PM (GMT 0)
Loneylane, how long have you had UC? I have had it for 5 years. Have you or anyone else tried any naturopathic or homeopathic meds along with traditional meds?
Posted 6/3/2008 10:04 PM (GMT 0)
Ah yes, I've tried several different homeopathic things plus all the traditional meds, but the Remi has worked the best. I've had UC now for about 4 years....been on Remi for 3 years.

Posted 8/26/2009 8:51 AM (GMT 0)
hey dude, i started remicade 2 weeks ago, i had my second infusion 2 days ago and i can tell you that this drug is absolutely amazing...i can tell a huge difference just from the 2 infusions. When i get to the infusion center, i sit there and they give me the benedryl and i basically pass out. Its absolutely amazing, i cannot tell you how much of a difference remicade has made in my life. I'm able to go out with friends MUCH more freely. By no means are things back to normal, BUT they are on their way. Im extremely positive about the next few infusions. Stick in there bro, things will get better while you're on this medication. I really feel for ya and hope things improve bud.


Diagnosed with severe UC, winter 2006
40mg prednisone daily, 1,000mg ursodoil daily, 6750mg Colazal daily
Posted 8/26/2009 8:57 AM (GMT 0)
I took Remicade after my last stint in he hospital and it worked, I was home after about 3 days. Now because of inurance problems i am on pred but also didn't want to be on Remicade because I want abaies and am a little sketchy about new drugs. I am ready to cal myself an old maid at this point and adopt from Cambodia at this point because of the way the pred is making me feel!
Posted 1/30/2010 7:53 PM (GMT 0)
Hey Guys----I have had UC for 28 years.. I have been on steriods off and on and asacol and azulfidine. Since last sept when my wife was undergoing chemo for breast cancer my disease has been unstoppable. I'm scared. The doctor wants me to be on Remicade starting Feb 11th. I have lost 10 lbs in 3 weeks. He thinks it will be a good fit and by looking at your comments i have some hope...  I'm also battling insominia for the last 3 weeks. Dont know if anybody has had 2 problems at the same time----I'm also seeing an acupunturist that says I'll be ok in a couple of weeks with her. Still skeptical about all of this. I feel like I should start a show titled "life is a pain in the rear "...

Azulfide 500mg

Nexium 40mg

Sleep time tea  

Posted 1/30/2010 8:11 PM (GMT 0)
I just had my sixth infusion last week and still no change. I am on the highest dose possible and it has done nothing. My last flex sig shows no improvement at all. Hoping to get approved for Humira waiting for an appeal. Good luck with it though. I hope you get good results.
Posted 1/30/2010 8:36 PM (GMT 0)
Done well with remi so far. I'll just tell you in regards to the acupuncturist, or for that fact any doctor or practitioner of any type that tells you in a few weeks you'll be fine with them.... I would be hesitant to believe anything they said, unless they also told me they would give all my money back if I wasn't better. If they are truly that confident that should be no problem. Most likely they will backpedal and rephrase their statement. Even the GI docs will tell you the remi may or may not work.
Posted 1/31/2010 12:57 PM (GMT 0)
Hey Dr-A. Thank-you for the opinion. I guess as all of you know I'm trying alternatives to see if anyting else works before i try the Remicade. Interesting to note but yesterday I had a solid bowl movement and no blood. Hadnt done that in 4 months. I did switch to Azulfidine 2 days ago..Did my second acu-visit and slept really well last night.(been batalling insominia in the last 4 weeks)..This morning however it was back to diaherra. I'm still taking my GI meds, some enzyme pills and watching what I'm eating. The only thing that my GI doctor hasnt given me is predisone----It did work in the past----I may call him on monday to see what he thinks.... 

Nexium 40---reflux

Azulfidine 500 6/day

chinese enzymes

Posted 1/31/2010 5:15 PM (GMT 0)
Centacor does have a program for financial assistance called Remistart, managed thru Access-1. Phone is 800-222-3771. It only covers a small portion, but every little bit helps.
Shop around- our infusion for 10 mgs. per kilo( over 4 vials), was $14000. per infusion at a university hospital. It is $5700. now at an infusion center. My bill for Monday was $5760.--and yes, we pay for every penny for awhile--till we hit 15k out of pocket... It is the price for keeping my daughters colon, and yes, I need health care and insurance reform.
Posted 1/31/2010 7:16 PM (GMT 0)

Joesph said...
Hey Guys----I have had UC for 28 years.. I have been on steriods off and on and asacol and azulfidine. Since last sept when my wife was undergoing chemo for breast cancer my disease has been unstoppable. I'm scared. The doctor wants me to be on Remicade starting Feb 11th. I have lost 10 lbs in 3 weeks. He thinks it will be a good fit and by looking at your comments i have some hope...  I'm also battling insominia for the last 3 weeks. Dont know if anybody has had 2 problems at the same time----. Still skeptical about all of this. I feel like I should start a show titled "life is a pain in the rear "...

Azulfide 500mg

Nexium 40mg

Sleep time tea  

I agree with Dr. A, is there any money back guarantee is the acupuncture doesn’t work. Also, what is meant by “ok” when you said, “I'm also seeing an (acupuncturist) that says I'll be ok in a couple of weeks with her”? To me this says, “I hope I’m saying the right thing to him so that he pays me money.”

When I seek things for an UC flare-up, the first question I ask is how, exactly, will this product of technique solve my problem. So how exactly does acupuncture help UC? What does acupuncture do to make the inflammation and ulcers go away? The immune system is causing the problem so how does acupuncture either stop the immune response, block the immune response or provide the immune response with something else to attack other than the colon tissue?

I would believe that there could be two ways and if I were selling the technique to you I would say:

1. The needles stimulate areas that act to redirect or turn off the immune response.

2. The technique relieves stress, much like a message, by allowing the patient much need time to lie still and comfortable and have someone else give attention to them.

I just made these up. What’s the real answer(s)?

Posted 1/31/2010 7:23 PM (GMT 0)
Sorry about that last post being so off topic…
Remicade helped me go into remission, I believe, with the help of Imuran (maybe it was just the Imuran). At any rate I used both and the same time 4 years ago and stopped the Remicade after about 5 infusions. Last March my colon looked so good (no signs of UC) that I lowered the Imuran from 100 to 50mg and by October I was full flare. I am now back up to 150 mg Imuran and will have my 3rd infusion next week. I feel great. Last month I was in the hospital talking colon removal and I now work, run errands, do a light workout, etc.
I plan on dropping the Remicade as before as my GI said there is no more risk of developing antibodies doing that than staying on it. I believe the Imuran gets the credit but Remicade may have been helping a lot. I have no side effects from the Remicade and believe it is safer than Imuran.
Posted 2/1/2010 1:06 AM (GMT 0)
Thx guys for the comments on acupunture. I'm still schedueled for Remicade on the 11th of feb----I'm still seeing acupunture doctor (she has a list of titles) and yesterday I actually had 2 solid bowel movemnets. I had not done that in 4 months.. Then again I ate rice and plain chicken and switch to azulfidine from asacol. Another option is to go back on steriods. I havent bled much in this current attack.. Just going 4-6 times daily..I have not been on predisone in 6 years..What do you guys think
Posted 2/1/2010 1:18 AM (GMT 0)
hey cra43---I've also been selected for the study for 8 weeks---Sinai hospital in Calif???.. anyway , i'm 50 years old and been hanging in there with my disease til the last 4 months when my wife was diagnosised with breast cancer----The really weird thing was when she went on chemo treatment, it was the same time my uc flare took off.. weird---the doctor said no correlation...good luck---still scared on my end---got to get close to god
Posted 2/1/2010 1:22 AM (GMT 0)
Thx Burli---I guess somethings are not explainable---I cant smell him, cant touch him, and cant see him --yet I beleive in a higher power---I did like your logic although---Looks like smart thinkers for IBD patients.. Go Remicade
Posted 2/1/2010 1:29 AM (GMT 0)
One last question for the night---Other than benedryl, is there anything else they put in the infusion besides Remicade???    

Posted 2/1/2010 1:54 AM (GMT 0)
they might give you hydrocortisone as well. mmm steroids, just what we need more of right?
Posted 2/1/2010 12:50 PM (GMT 0)
Thank-you for the reply thecoppah----I need Remicade---I couldnt sleep last night---running to the bathroom every 2 hrs plus I'm afraid to eat anything because

of the vicious cycle----I guess I have to trust my doctor and go with remicade---I dont know if i can wait til next wednesday. I hope it takes right away----Anyone have depression and can use anti-depressants with Remicade? I've been holding off as long as I can----

Posted 2/3/2010 3:35 AM (GMT 0)
Hi to all my sister has used remicade in the past but had to stop because she had gotten immune to it... while she was on it though you would never know she had UC... @ DUKE hosp it was 17,000 for everything for her... hopefully it will be better for you :)
Posted 6/1/2010 3:08 PM (GMT 0)
I'm about to start Imuran, I never knew you could take that and Remicade at the same time. I'm really in bad pain, worst flare I've had in a long time. I also have diverticulosis, and worry about toxic megacolon. my gut is sensitive to the touch, i'm supposed to go in today for blood work before I start the imuran, I'm certain I'm anemic from all the blood loss. that and I feel aweful. I wonder if I should put off blood work till tomorrow when the GI is back in the office.
Posted 6/1/2010 8:13 PM (GMT 0)
I will have my 4th infusion on Thursday of this week. I am doing very well on the Remicade, though it didn't kick in the very first time. It was after the second infusion that I noticed things really improving, and by the third, I was doing very well. I would say that I am pretty close to being in a good, solid remission-going 2-3 times a day with no visible blood and no urgency. I would like it to be more like 1-2 times a day, but even if it never gets there, I feel great where I am and I hope it stays this way for a long time!! (I built antibodies to Humira, so now am on Remicade, but I anticipate I will eventually build antibodies to it as well)

I have not had side effects other than feeling tired and achy the day of the infusion/next day. And I am in the RemiStart program, which helps a lot. My insurance takes over after $2K for the year, so I am already past that, but it is great to have the financial help! On my EOBs, the treatments are around $5-6K each without any insurance/assistance.
Posted 6/1/2010 8:59 PM (GMT 0)
I was thinking things were improving for me over the past few weeks.. pffffff.. some chance!! - Past few days I havent been able to leave the house, or go to work.. Pretty bad, In fact probably the worst ive been in about 5 years. Due to the fact that I am not taking pred for this flare.. I have an appointment on Monday (apparently to discuss this and or Humira) and I am praying that they offer me, and more so praying that it works!!! I want my life back! - Great to read all the success stories of this drug!
Thanks to you all for taking the time to reply, I love this forum!
✚ New Topic ✚ Reply
123