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Crohn's Disease Forum » Treatment » Remicade/Infliximab » I have been getting Remicade for 10 years


03-06-2011, 07:52 PM   #1
Mike C
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I have been getting Remicade for 10 years

I have had great results, bringing back a normal lifestyle. I got nausea during the infusion, Itchy feet....all preventable with salucortef drip. I no longer take the salucortef, just the tylenol and benedryl. I receive an infusion every 2 months for the past 7 years. It has stretched from 6 weeks to 8 weeks and I can probably go longer (joint pain is my main symptom from the crohns, nothing intestinal recently).

I have just been diagnosed with cellulitis in my hand and wrist. I am getting worried and am going to try to spread my infusions further.

I do not take any other drugs (although prescribed asacol). I workout 6 times a week and am in very good condition. I do drink more than I should (until this recent dose of antibiotics).

This is my 1st post here
03-06-2011, 09:53 PM   #2
Lydia
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Thanks for sharing this. I have been on it for a year and it put in in remission in 4 days after the first dose. I hope it works for me for another 10 years as well.

I get solucortef each time as well.

I dont know about the cellulitis thing though, sorry.
03-06-2011, 10:45 PM   #3
Nytefyre
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It rocks that you've been able to take Remicade so long! Congrats! and welcome to CF. You should drop a line in the Your Story subforum! We're all pretty friendly around here and most of us do not bite(unless you're into that kind of thing).
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03-07-2011, 04:41 AM   #4
Walt
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Welcome Mike!
You will find many kind and helpful people here.
I know all about having my hands or feet on fire with hives and an itchy rash.
Joint pain is also my biggest problem after digestive trouble.

What can you teach us about 'cellulitis'?
Why would larger infusion intervals help it?

A decade of good results with Remi is both amazing and encouraging!
Glad to have you with us,
be well as you can be,
Walt

ps we'd like to read your story in that part of this forum.
peace
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currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

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because those who mind don't matter and those who matter don't mind - Dr. Seuss

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getting knocked down is nothing.
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in the end, only kindness matters...
03-07-2011, 09:20 PM   #5
Mike C
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Cellulitis is an infection in the skin caused by bacteria. Remicade compromises the immune system, leaving you succeptible to infections. It got in through a skin split in my knuckle on my ring finger.
03-09-2011, 01:28 AM   #6
Lydia
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Try putting honey on it. Honey can heal skin infections, even MRSA. Dont take my word for it though, look it up for yourself.
03-09-2011, 09:40 AM   #7
moogie
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You had no big side effects at all ecept for the ones you mentioned?
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On Remicade Since April 2011 I am alive again!
03-09-2011, 04:59 PM   #8
Mike C
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No side effects at all. I exercise daily and eat very well too. The Remicaid has changed my life - given me a quality of life - it has cured my achey joints. I started with every 6 weeks...can now go every 8 weeks. Don't be afraid to give it a try. It truly has made me forget about the Crohn's Disease. Good luck!
05-25-2011, 10:58 AM   #9
Piatchi
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I have a question for you, Lydia and Mike:


How severe was your Crohns before taking remicade? Were you moderate? Mild?

Did you have fistulas/abscesses? Any other problems?

Im just curious, because Im in a very bad flare and have an aggressive, fistulizing severe case of Crohns (says the Gastro doc)

I want to know if severity pre-Remicade has anything to do with the length of success of Remicade.

Thanks!
05-26-2011, 09:29 PM   #10
Lydia
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I was severe flaring. I was so inflammed My GI doc couldnt use a normal scope, he had to use a pediatric scope. The scope itself was extremely painful. I had a couple fistulas at the time as well. My doctor told me it was surgery or remicade. I really didnt want another colostomy, so I picked remicade.

My fistulas closed in 4 days after my first treatment. I went in to remission at about the same time and have been in remission ever since. I responded really well to remicade.
05-31-2011, 09:36 PM   #11
Max's Mom
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Hi, Mike C! I have a son with Crohn's and he is on Remicade. He is 10 years old. I just haven't seen anyone that's been on Remi for 10 years. That's great news.I hope it will work that long for us.For how long have you had Crohn's?What is your plan if Remi stops working?
06-13-2011, 07:43 AM   #12
Maryam
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I have had great results, bringing back a normal lifestyle. I got nausea during the infusion, Itchy feet....all preventable with salucortef drip. I no longer take the salucortef, just the tylenol and benedryl. I receive an infusion every 2 months for the past 7 years. It has stretched from 6 weeks to 8 weeks and I can probably go longer (joint pain is my main symptom from the crohns, nothing intestinal recently).

I have just been diagnosed with cellulitis in my hand and wrist. I am getting worried and am going to try to spread my infusions further.

I do not take any other drugs (although prescribed asacol). I workout 6 times a week and am in very good condition. I do drink more than I should (until this recent dose of antibiotics).

This is my 1st post here
good that Remicade has been working for your for 10 years. My husband has been on it for 4 years and it has been working for him.
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06-03-2012, 01:39 PM   #13
ChrisL
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I had my first Remicade infusion 2 weeks a go and ended up in the ER yesterday with Cellulitis in my throat and an enlarged Esophagus. It felt like I had a golf ball in my throat when I swallowed. I was given an IV of AB's and Fungal meds (Just in case) and today I went back and got an AB injection and a rx for Bactrim. I will be calling my Rheumy and Infectious Disease dr in the morning to see if they want to continue the infusions. I have both Crohns and Anklyosing Spondilitis
06-03-2012, 11:53 PM   #14
tots
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Ok, I was feeling pretty good until the last few posts- now I can only think OH SHIT! What am I getting myself into? I need some dental work should I wait to start Remicade?
I am not so flushed I look like a tomato!! My heart rate is up..... Oh lord I hope this goes well!


Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:
08-24-2012, 05:02 PM   #15
sickofcrohns
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Hello, fellow Remicade old timer.
I have been on it for 8.5 years. Minor problems: allergic to it (so I get steroids with every treatment -- Benadryl is not enough), and had guttate psoriasis for 6 months last year. The psoriasis could have been from the Remicade or independent of it -- there's no way to tell. But without the Remicade, I would be dead, so not complaining much! The worst thing about Remicade these days is the cost and fighting to get insurance coverage. (I'm in Canada but the gov't program responsible for covering expensive drugs like Remicade does weird things from time to time. . .)
09-28-2012, 05:11 PM   #16
djpoptart92
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I have been on Remicade now since it was approved by the FDA, which is more than 10 years ago. You can read about my history with Crohns here:

http://www.crohnsforum.com/showthread.php?t=40970

And I too have Cellulitis. I am currently having a Cellulitis breakout on my face, and I just had a Remicade infusion last Monday. I get it around my eyes. It burns, and my eyes ooze as if I have pinkeye, and I don't. My face gets real red and its hot to the touch. Stress is another factor for my Cellulitis flares. Worst I ever had was when I had to have one of my cats put down cause she was failing, had her 25 years. Cellulitis hit me ALL OVER. I dribbled water on my back and it felt like a knife was cutting into me.

So I guess the only side effect, if it is a side effect of Remicade, is Cellulitis. Glad I am not the only one who suffers from it. I am going to submit it to Janssen along with pictures and a note from my doctor, so they can add it to the possible side effects of Remicade.
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10-09-2012, 03:44 PM   #17
Badr
 
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I really really wish it stays working for me more than 10 years(just 1 month now ), same with all of you guys and gals

Last edited by Badr; 10-09-2012 at 04:15 PM.
10-30-2012, 07:33 PM   #18
mreyn
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They have just started my son on Remicade and will be adding imuran to be sure it continues working. I'm scared to death of adding Imuran... does anyone else use Imuran with it?
05-04-2015, 01:49 PM   #19
Cheryl12
 
Join Date: May 2015
I have been on Remicade for pushing 8+ years. I did start out on both Imuran and Remicade but because of the reports on lymphoma which, I don't know much about, I didn't want to take the chance honestly.

There were reports that small dose of Solu-medral with every infusion extends the bodies ability to tolerate so I take that with the Remicade. (Solu-medral is a steroid so long term can cause bone loss so I take a supplement for that).

My Crohn's was pretty bad, got to the point that I had fistulas, couldn't have a colonoscopy because my colon was in such bad shape. Tried 6mp, Asacol, Imuran, was on Prednisone several times. My Dr. finally said pick surgery again and have the rest of your colon removed or Remicade.

Needless to say...Did the first few years of Remicade with IV Benadryl talk about a cat nap. Had a hard time shaking that drowse feeling for days so I stopped that and didn't have any problems.

Also, I take Asta-Factor which is loaded with astaxanthin, an anti-inflammatory and made from seaweed, So it's not another synthetic drug in your body. This has helped me tremendously with swollen joints. It took a few weeks but what a difference it made for me. I've taken it off and on again. on is better. It also seemed to ease the Crohn's and helped while I was waiting for my tests to come back before I could started the Remicade.
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