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07-18-2016, 04:55 PM   #1
eneg16
 
Join Date: Jul 2016
Location: Nova Scotia
Starting Remicade

Hi there. I have Crohn's and I am going to start Remicade (combined with Imuran). Part of me is excited to start it because I know Remicade is good for abscesses and fistulas, both of which I get. However, another part of me is kind of scared. I am nervous about the potential side effects. I am wondering if anyone can tell me about their personal experiences on the drug. Another thing that I am super worried about is the effects it may have on my future ability to have children. Does anyone have any knowledge/experience on this? I do see my infusion coordinator soon, but thought I would throw it out here as well. Thanks all!
07-18-2016, 05:16 PM   #2
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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Everyone is different. I started Remicade a few years ago. It was very expensive so i took myself off. Big mistake because I developed a bowel obstruction. That led to a resection. That was in April. In November of that same year, my doctor started me back on Remicade. I had a reaction to it this time. I had a lesion which only responded to surgery. Like I said before, everyone is different.
07-19-2016, 04:00 PM   #3
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

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I've been on Remicade and Imuran for two years. It healed my multiple fistulas quickly, and I haven't had any since. I get a steroid with my infusion. Some doctors order Benadryl, to decrease any side effects. My blood pressure drops with the infusion, then goes back to normal. Some people have the opposite effect. I haven't had any side effects to speak of, after some infusions I feel tired. It's been a game changer for me, I hope it works for you as well.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-06-2016, 10:15 AM   #4
Liza123
 
Join Date: Aug 2016
Hi! I'm so sorry to hear about your fistulas. That is not what I get but I have done imuran entyivyo and remicade. To me the Remi has been the most effective and the least post infusion side effects! Good luck!
08-20-2016, 04:08 PM   #5
kiltubrid
 
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Join Date: Jun 2011
Location: Madison, WI, USA

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I've been on remicade for three years and it's worked well for me. I get infusions every 8 weeks. I also take 150 mg of Imuran daily. No negative side effects and it made my Crohns go into complete remission for the first time in more than 30 years. It's helped with rheumatoid arthritis for me, too, which has been a challenge for me.

The only downside is the expense here in the US. Luckily my insurance covers all but 10% -- I reach my annual out-of-pocket co-pay ($1000) in January every year.

Good luck!
__________________
Diagnosed with Crohn's Disease Oct 1982; Rheumatoid Arthritis Nov 1985; Ankylosing Spondylitis June 2015
Taking 150mg Azathioprine; Remicade, Tramadol, Celebrex
Been there, done that: Sulfasalzine, Pentasa, Asacol, Prednisone, Budesonide, Cimzia, and more colonoscopies than I can count
08-20-2016, 04:10 PM   #6
eneg16
 
Join Date: Jul 2016
Location: Nova Scotia
I have had two infusions so far. I am also on Imuran. I haven't had any side effects at all, and am just waiting for the drugs to kick in. Fortunately, I live in Canada and have 100% of the costs covered.


08-21-2016, 01:23 AM   #7
aypues
Senior Member
 
Join Date: Mar 2013
Location: San Diego, California

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The only downside is the expense here in the US. Luckily my insurance covers all but 10% -- I reach my annual out-of-pocket co-pay ($1000) in January every year.

Good luck!
Are you not eligible for the Remistart program?
08-21-2016, 09:26 PM   #8
decotamed
 
Join Date: Aug 2016
Location: Independence, Missouri

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I was on Remicade for about 12 years. It worked very well for me. I had no side effects, I felt great, and I could usually keep my Crohn's in remission on it. Unfortunately, after a while it stops working. It took 12 years for me. I was then put on Entyvio. The transition from Remicade to Entyvio was the hardest thing on me. I was sick for almost a year, and wound up with a permanent colostomy.

I would recommend the Remicade to anybody with Crohn's. But I also know that everybody is different and you may have different results than me.
10-27-2016, 05:51 PM   #9
Rez
 
Join Date: Oct 2016
Would you mind if I ask how old you are? My daughter is 15 and they want to put her on remicade in two weeks.
10-27-2016, 07:56 PM   #10
eneg16
 
Join Date: Jul 2016
Location: Nova Scotia
I am 22 years old. I am going to get my 4th dose on Monday, and have not had any adverse effects as of yet. My symptoms have also diminished.
10-27-2016, 08:11 PM   #11
Rez
 
Join Date: Oct 2016
Thank you, I really appreciate your feed back.
11-13-2016, 04:32 PM   #12
NAILBITER
 
Join Date: Nov 2016
Location: morganville, New Jersey
Hey guys i kno im a little late to the conversation. Im 23 and was diagnosed with crohns and ulcerative colitis when i was 14. Ive been on humira everyother week since 2011. I had hit remission for a solid two years with my bodyweight skyrocketing from 125 to 160, i also thank bodybuilding and powerlifting for keeping me looking good in the process. I was doing fine until they caught symptoms of lym coursing my body. My body immediately gave up and was booted out of remission. After taking weeks of antibiotics, my doctors took notice that the humira was not having the same results. They upped my dosage to every week w/ the attemp t to bring me to a state of norm. After a year and some months they ran bloodwork and found my body developed antibodies against the humira. Ever since my remission crash, my bodyweight shot down to 130 and dont look or feel the same. Symptoms include: highy frequency and emergency of bathroom usage, extreme pain when stool passes parts of the GI tract that is most inflamed, debilitating but sparatic joint paint in hands, hips, lower back, knees, ankles and feet. I am starting remicade tomorrow with 6mp instead of methotrexate. Should i be optimistic towards these infusion results. Just curious with my past what my chances are of succeeding with it .
11-13-2016, 04:41 PM   #13
Rez
 
Join Date: Oct 2016
Hi Nailbiter, My daughter started Remicade 4 days ago. The only side effect she has been having is, she is tired. She gets about 8 hours a sleep at night. Other than that she is feeling good. Good luck and sending positive thoughts!
11-13-2016, 04:44 PM   #14
NAILBITER
 
Join Date: Nov 2016
Location: morganville, New Jersey
Thank you! I haven't slept a full 8 hours in months. I'm just excited to start my life again.
11-13-2016, 04:44 PM   #15
xmdmom
Senior Member
 
Join Date: Jun 2012
Location: New York

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My son is 23 and has been on Remicade for 2 years and it has worked very well with no side effects except fatigue the day and the next day after the infusion (knock on wood!). He has gained weight and energy and feels generally well with very occasional minor gi symptoms. I hope it works well for you!
11-13-2016, 04:47 PM   #16
NAILBITER
 
Join Date: Nov 2016
Location: morganville, New Jersey
I did not expect to see any replies for a while, thank you. I was big in the bodybuilding scene and I have been watch my body dwindle before my eyes. I am super stoked for the weight gain though.
11-13-2016, 09:19 PM   #17
aypues
Senior Member
 
Join Date: Mar 2013
Location: San Diego, California

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Remicade is more effective than Humira anyway. I'm pretty sure you'll respond, and very quickly. I tried Humira and it never worked. I switched to Remicade and it immediately went into remission, stopped all pain, and i've gained 10lbs.

You're on the right path, especially since you are doing combination therapy. Watch for side effects with the 6MP....if it's making you feel wiped out constantly it's not you, it's the 6MP. If that happens you can try Methotrexate or Cellcept. I take Cellcept with my Remicade and it's a miracle. The only thing better about Humira was the price. Their patient assistance program is the best. Remicade is super expensive. I'm sure you'll be back in the gym soon. Check your iron and ferritin levels too.
11-14-2016, 02:03 PM   #18
NAILBITER
 
Join Date: Nov 2016
Location: morganville, New Jersey
I was on methotrexate for the duration of the humira, and I honestly prefer the pain from the humira to the nausea of the metho. I'm receiving the remicade as we speak. So far the Benadryl knocked me out cold for an hour.
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