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Crohn's Disease Forum » Surgery » Fistula Success Stories » First Remicade infusion


 
05-24-2014, 12:04 PM   #1
Tuff
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First Remicade infusion

So, I had my first Remicade infusion yesterday. I had been so apprehensive about it, that I had been putting it off for a long time. My fistulas are now recurring, as soon as one heals up, I get two more, so it was time to bite the bullet. I was expecting Benadryl with it, but my doctor had prescribed a steroid. I was told that if there was a reaction, it would likely happen in the first 20 minutes. The time went by very fast chatting to the other two Crohn's patients. I didn't have any kind of a physical reaction. When I got home, my thoughts were racing, and I felt like my brain was on a trampoline. I lay down and meditated to calm down, had a nap, and it went away. Is that a normal reaction? Can I start getting side effects down the line? I really hope that this is the magic bullet that makes my fistulas go away. It wasn't scary at all.
This morning I woke up energized, and spent the morning cleaning house, and I'm still raring to go. After spending the last six months too exhausted to do anything.
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05-24-2014, 07:52 PM   #2
Jmrogers4
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My son is bouncing off the wall with a ton of energy after his infusions. He had his first one in January, the difference for him was immediately apparent I hope it works as well for you. He is due for his 5th infusion next week and I can't wait as I can tell his energy is starting to wane.
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Mom to Jack (18) dx Crohn's 2/2010
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

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currently none due to liver issues
05-25-2014, 07:08 AM   #3
Alley2231
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My Dr's explained to me that serious side effects can occur with in 24 hours of the first 2 infusions..... because of that my mother stayed with me the first 2 times, but I didn't have any serious reactions to it. I seem to always be sleepy during the infusion, I'll take a little nap on the car ride home and then I'll have A LOT of energy when I get home!! The next day I'm usually very tired and I have muscle and joint pain, but I'm good to go after that.

I've had 3 infusions so far and it has worked miracles! I hope it continues to work for you!
05-25-2014, 10:00 AM   #4
Tuff
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Jacqui, can they shorten the cycle when that happens?

Thanks Alley, I will keep an eye out. So far I have a pimple on my chin, I never get pimples. The energy level is still up. It's great waking up feeling so good.
05-25-2014, 11:14 AM   #5
Jmrogers4
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Yes we are doing 6 week cycle this time with increased dosage they are figuring since he has grown so much since starting he is being under dosed so we will increase dosage this time as well and hopefully be able to move back to 8 week schedule
05-25-2014, 02:15 PM   #6
Alley2231
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Jacqui, can they shorten the cycle when that happens?

Thanks Alley, I will keep an eye out. So far I have a pimple on my chin, I never get pimples. The energy level is still up. It's great waking up feeling so good.
The pimple may be from the steroid you got before the infusion.... a side effect of steroids is acne. I speak from experience, because I was on steroids (Prednisone) way before Remicade and I still am....and i have the lovely honor of looking like a pimply faced teenager!
05-25-2014, 04:19 PM   #7
Tuff
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Jacqui, a growth spurt is a good sign. He must be getting adequate nutrition now.

Alley, I've done the prednisone a few years ago. Half my hair fell out, and then grew back in wavy instead of poker straight. I got the moon face too, but pimples are new.
I think I'm overdoing stuff, I planted potatoes and mowed my lawn with a push mower.
05-26-2014, 06:48 PM   #8
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My son is bouncing off the wall with a ton of energy after his infusions. He had his first one in January, the difference for him was immediately apparent I hope it works as well for you. He is due for his 5th infusion next week and I can't wait as I can tell his energy is starting to wane.
Hi Jmrogers,

My daughter just had her second infusion this past Friday. She too has this high energy. I asked the head nurse that does the infusions and sits with throughout the process if "hyperness" is aside effect and she said, she hadn't heard of that one. My daughter before Crohn's was always bubbly, but she is now FULL of energy.

Glad your son has responded well.
05-26-2014, 07:09 PM   #9
Jmrogers4
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I'll take the hyperness, it's more like the child he was before crohn's hit. I think that he just feels so good right after the infusion that the happiness and energy just bubbles out. Hope it continues to work well for your daughter it just makes me so happy to see them back to their pre-crohn's self.
I got to figure that it's something nobody complains about so they don't hear of it as a side effect.
05-26-2014, 09:48 PM   #10
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No complaints here! I'm just happy that they are feeling well, being kids and have worries on the back burner...for now anyway!
05-29-2014, 07:25 AM   #11
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This makes me excited!!! I just got pulled off 6-mp yesterday and am starting Remicade as soon as my insurance approves it! So ready!!!!
05-30-2014, 03:16 PM   #12
Emily's mom
 
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This makes me excited!!! I just got pulled off 6-mp yesterday and am starting Remicade as soon as my insurance approves it! So ready!!!!
Good luck to you! I hope this gives you long relief.

~J
06-03-2014, 11:06 AM   #13
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It's day 11 and my fistulas have stopped draining. This is happening much faster than anything I could hope for. I still sleep longer than normal, but have more energy. Only side effect I have noticed so far is a cracked tongue and some small blisters in my mouth. Not painful. I hope it is also doing something to the ulcers and bleeding in my large intestine, but I won't find out until I have another colonoscopy. So far so good!
06-03-2014, 12:32 PM   #14
CrohnS94
 
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I have also been putting off remicade too...
Afraid of the unknown! I am glad to read all the post here.
Thank you all.
06-06-2014, 07:52 AM   #15
texasagg02
 
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Got the call!!!!! First Remicade infusion will be on Tuesday!!!!! So excited! Hope this works so I can get off the steroid!
06-06-2014, 12:52 PM   #16
Tuff
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I just had my second infusion yesterday. That one made me tired, but I'm feeling fine today. My fistulas are closing, I can see white scar tissue. I get too many, so they don't use setons. I just hope they aren't closing too fast. This is just so amazing.
06-13-2014, 06:24 PM   #17
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First treatment today and went well. No side effects and only feeling tired but that could be due to lack of sleep. I typically only get 4-5 hours sleep per night. Hoping that is due to steroid that I can now taper off and get back to normal.

Have my second in two weeks and will report progress then.
06-13-2014, 08:20 PM   #18
FrozenGirl
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So glad it is working for both if you!
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06-13-2014, 10:21 PM   #19
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I had six fistulas, they have now closed. I also have ulcers in my large intestine, no idea if they are healing, I hope so. Typically I would have gotten new fistulas as the old ones healed, but nothing so far. This has been going on since last November, I'm afraid of sepsis. I feel better, but if I do too much, I run out of energy. Last loading dose is in three weeks.
06-14-2014, 12:58 PM   #20
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Ive been on remicade/infliximab since around march 2010 just before my 17th birthday, its worked lime charm feels like im having captain Americas super soldier serum , after the initial period I was having the infusion every 8 weeks it was going great for around a year or so then it started wearing off 1-2 before I was due, so it was reduced to every 6 weeks which im still on to this day (27th june next) but my last Infusion hasnt worked as usual, awaiting another colonoscopy mid july a course of prednisolone in the meantime
06-15-2014, 03:02 AM   #21
Chica
I've been on Infliximab only since October 2012. It really is the miracle drug. I'm on it every 8 weeks but just like TheRixz I'm really starting to notice the effects wane after 6 weeks so there are 2 weeks that are not that productive & I have to slep for an hour every afternoon just to function. It might be time for me to reduce it to 6 as well. Glad it's working for you : )
10-06-2014, 09:50 AM   #22
Tuff
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Update.
It's now been over four months since I started on Remicade. I currently have no Crohn's symptoms. I am off Cipro and Pentasa, but still take Azathioprine.
I just got back from a two week vacation, and had no problems. I'm not currently working, but hoping to go back at least part time in the future. I used to sleep at least ten hours a night, and am now sleeping less. I used to have an afternoon nap, sometimes even two hours, and I seldom do now. I'm slowly getting better. I'm more active, try to work in my veggie patch, cook from scratch, do some reno. I'm still on the low residue diet, and have been a vegetarian for a year now.
Some things I've had to take off my diet. Coffee makes me run to the bathroom. Alcohol makes me ill. I cook my vegetables to avoid stomach ache. I think it's important to find and eliminate the things that don't agree with you. Maybe as my intestines heal, I can add raw veggies again.
I hope that the Remicade keeps working, I feel like I got my life back and I'm very grateful.
10-07-2014, 06:40 AM   #23
Chica
Great news Tuff : )
11-27-2014, 01:31 PM   #24
Tuff
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My fatigue is now gone. Whether it was the Remicade, or the discontinuation of Pentasa and Cipro, I cannot say. Maybe a combination of both?
I didn't realize I had a "brain fog" as well, now that it's gone I notice the difference. I used to wake up tired and felt kind of blah all day. Not in a depressed way, I would try to do stuff but would have to rest from fatigue.
I'm now job hunting, I think I can handle it again.
I know that I can relapse and go into a flare, but recovery is possible, and it's given me new hope in living with this horrible disease.

11-27-2014, 09:26 PM   #25
DJW
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This is fantastic news. I think we get so used to feeling unwell we forget what healthy is like.
Then we look back in amazement at what we were able to accomplish.

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05-24-2015, 06:18 PM   #26
Tuff
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It's now been a year since I started on Remicade, to heal my multiple fistulas. They closed within a month, and have not recurred. All the ulcers in my large intestine have healed, but I still have one patch in my rectum. My Remicade was upped to every six weeks to try and heal this last spot. I have gone back to work and feel pretty normal. A few days before my infusion I start to feel tired, and have looser stools. After my infusion, I'm bouncy and full of energy again. I'm just so amazed at how much better I feel. Thank you Remicade for giving me my life back. I hope it lasts for a long long time.
05-25-2015, 05:27 AM   #27
Chica
Well done Tuff, same here I feel it's a miracle med too! : )
06-17-2015, 02:32 PM   #28
Jay Woodman
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I just had my second infusion yesterday. That one made me tired, but I'm feeling fine today. My fistulas are closing, I can see white scar tissue. I get too many, so they don't use setons. I just hope they aren't closing too fast. This is just so amazing.
Interesting, that they didn't use setons on your perianal fistulas. I thought that setons helped to drain inflammation in the tract & complement the Remicade to assist in healing the perianal tracts. But, given that you had multiple fistulas I guess that was a key factor in deciding to see if Remicade alone would heal the fistulas. Luckily, for you the Remicade closed the tracts without a combined
Seton+Remicade approach. I'm on Remicade#6 & one fistula without a setons till remains in a continuous cycle of fill & drain.
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06-17-2015, 06:03 PM   #29
Tuff
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My fistulas have been compared to a bowl of spaghetti. There were too many of them to use setons.
06-17-2015, 06:09 PM   #30
Jay Woodman
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My fistulas have been compared to a bowl of spaghetti. There were too many of them to use setons.
Wonderful for you that Remicade closed them! That's awesome : )
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