My Crohn's and Colitis Blog » Chron's Disease » Newbie with a reaction to Remicade
Newbie with a reaction to Remicade
Question:
You’re put completely to sleep during the procedure.
I had it done once, and admittedly that was years ago, but I was wide awake. And it was no big deal. A tad uncomfortable, but less uncomfortable than being really constipated, like you get from post op narcotics. Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
Response:
Mary Lynn, you are confusing terminology.
Thanks! I wrote that I get them confused, but Char told me the right word. My teacher friend has a colostomy and I’m going to have to have a colonoscopy. No, I’d much rather have the second than the first, though I’m not looking forward to it. I do hope my teacher friend can get some help. She is hoping to have the colostomy reversed this year. I just hope it all goes okay for her. Thanks for the info and take care!!!!!!! :O) Mary Lynn (mlh) (O: :O) "Of all the things I’ve lost, I miss my mind the most" :O) (remove ma in email address)
Response:
I would certainly mention it to her. I am surprised her doctors havent already. Char
Thanks all! I sent her that link that was mentioned. She is such a pretty petite thing and has had so many problems. I wonder if it matters how long or how bad the disease has progressed. We are from a little town, and I don’t know exactly what her treatment plan has been, but I know she hates the colostomy (thanks, char, I get it and the procedure where they check out your colon mixed up!) Maybe I’ll remember after next year because my doc said I needed that done then because of my age. I didn’t know they recommended checking out your colon as a regular procedure after a certain age. Is it an embarrassing procedure????? Not looking forward to it. Thanks again for the info on Remicade and Chron’s disease. Take care! :O) Mary Lynn (mlh) (O: :O) "Of all the things I’ve lost, I miss my mind the most" :O) (remove ma in email address)
Response:
– Hide quoted text — Show quoted text – I would certainly mention it to her. I am surprised her doctors havent already. Char Thanks all! I sent her that link that was mentioned. She is such a pretty petite thing and has had so many problems. I wonder if it matters how long or how bad the disease has progressed. We are from a little town, and I don’t know exactly what her treatment plan has been, but I know she hates the colostomy (thanks, char, I get it and the procedure where they check out your colon mixed up!) Maybe I’ll remember after next year because my doc said I needed that done then because of my age. I didn’t know they recommended checking out your colon as a regular procedure after a certain age. Is it an embarrassing procedure????? Not looking forward to it. Thanks again for the info on Remicade and Chron’s disease. Take care! :O) Mary Lynn (mlh) (O: :O) "Of all the things I’ve lost, I miss my mind the most" :O) (remove ma in email address)
Mary Lynn, you are confusing terminology. A colostomy is when the colon/intestines (?)is routed through a hole (stoma) created surgically in your abdomen to collect fecal waste. This can’t be pleasant. (understatement of the year…..) A colonoscopy is a diagnostic procedure where they use a scope to view your colon to see if there are polyps, or cancer. It is the gold standard diagnostic tool for colon cancer detection. I suppose it’s embarrassing, but that’s hardly an issue. You’re put completely to sleep during the procedure. It’s the damned prep that’s a drag. You drink a gallon of Kolyte (sp) and end up spending hours in the bathroom the night before to cleanse your system. And, let me tell you…… you’re one squeaky clean mother by the time the colonoscopy starts. I’m scheduled to have a repeat performance done on Oct. 21st. I’m not looking forward to it either. 
— Di dabell at freeatlast dot com http://www.skybusiness.com/dabell2
Response:
I read somewhere about they might be trying Remicade for Crohn’s disease. One of the teachers at my school has this pretty bad. I was wondering if it is
something she should check into? They have info about it on the IBS/Crohns website on about.com at: http://ibscrohns.about.com My best, Rick http://arthritis.about.com
Response:
I read somewhere about they might be trying Remicade for Crohn’s disease.
They already are using it in Crohns and IBD and getting the same incredible results with it they do for inflammatory arthritis. Like Enbrel, it looks like it is going to be a wonder drug for a variety of different problems. She has a "bag"
Colostomy I was wondering if it is something she should check into?
I would certainly mention it to her. I am surprised her doctors havent already. Char "Remember, I’m pulling for ya’. We’re all in this together." Red Green
Response:
Hello everyone, I was diagnosed with RA in January, 1998, shortly after my 32nd birthday. I was first given Plaquenil and Methotrexate without results. In January 99, they were replaced with Enbrel which only gave a slight improvement. In December 99, I started taking Arava, and after a couple of months, I started noticing definite improvement in all my joints. Of course, I’ve also had the pleasure of taking Prednisone all along. Then, last May the Enbrel was replaced with Remicade. The first three infusions went great, and a few weeks after the first one, I was walking with only a little discomfort for the first time in 2.5 years. Sadly, about ten minutes into the fourth infusion 2 days ago, my heartrate skyrocketed and my skin turned red all over. The nurse turned off the machine right away and injected an antihistamine. After a few scary minutes (for me anyway), I felt things start to calm down. I had been warned that a few people build up immunity after the first few infusions. I’m supposed to talk with my doctor next week about what to do now. I’m wondering if any of you have had a similar experience, and what changes your doctor made to your meds. Hoping for a cure, John
Response:
I read somewhere about they might be trying Remicade for Crohn’s disease. One of the teachers at my school has this pretty bad. She has a "bag" (can’t remember what you call it…colon____?) She hopes to get it reversed this year sometime. I was wondering if it is something she should check into? Thanks! :O) Mary Lynn (mlh) (O: :O) "Of all the things I’ve lost, I miss my mind the most" :O) (remove ma in email address)
Response:
I read somewhere about they might be trying Remicade for Crohn’s disease. One of the teachers at my school has this pretty bad. She has a "bag" (can’t remember what you call it…colon____?) She hopes to get it reversed this year sometime. I was wondering if it is something she should check into?
Remicade was actually used for Crohn’s first. RA was second. I know one person that has had excellent results with remicade for crohn’s and expect that there are many others out there. ~Krissy See my pond: http://members.aol.com/KrissyJo/ponds.html Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.
Response:
Hi John: I’m so sorry to hear about your experience with remicade, especially since you were experiencing such good results. I am on remicade too, and will shortly be having my third infusion. I thought that my doctor was beong overly careful with the last infusion in that he had me take benedryl sublingually and orally with tylenol prior to the infusion. Maybe there’s a good reason for doing it. How much mtx are you taking now with the remicade? Or are you on the arava still? It is my understanding that mtx must be given still, but someone mentioned using imuran in place of mtx to prevent formation of antibodies against the drug. Perhaps arava would play the same role in preventing antibody formation. Rose
Response:
Hey John – I’m with Rose. MTX is supposed to be used with Remicade, although they’re currently doing a study without it. Sorry you had such a bad reaction. Good luck with the next drug! -g- Kitty
Response:
I’m wondering if any of you have had a similar experience, and what changes your doctor made to your meds.
Hi John, I haven’t gone the remicade route yet, I am a Prosorba fan myself, but my doctor told me about a similar reaction one of his patients had to remicade. From his description it was a rather serious, dangerous reaction. Just wanted you to know that you weren’t alone. ~Krissy See my pond: http://members.aol.com/KrissyJo/ponds.html Akron, Ohio http://arthritisinsight.com Knowledge is power…support is essential.
Response:
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