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08-08-2012, 10:54 AM   #1501
jmariel
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Remicade for about a year. Every 8 weeks. I take it in-patient with Benedryl and usually take a 2 hour nap while it's dripping.
08-08-2012, 01:13 PM   #1502
chrisnsteph1022
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I had my 3rd remicade treatment about 10 days ago and it hasnít helped at all.

I called my doctor and told him how I was feeling so he prescribed me antibiotics and ran a CT scan. CT showed my small/large intestine was inflamed but no blockage. I canít find anything to help control my diarrhea.

I am averaging 5-6 bowel movements per day and it is exhausting. The only thing to date that has worked has been some pain meds which suppress/relax the gut.

Any insight on what else i can try? i even did a gluten-free diet for 6 months along with a ton of natural supplements.
That's about how much I go. It's a huge improvement from the 15-20/day, so I'm grateful for that. But the Remicade just hasn't quite gotten me into remission. I'm also on imuran, lialda, vsl3 and immodium. I've had 5 infusions.
__________________
Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
FB support group
08-08-2012, 04:57 PM   #1503
Beach bum
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Having my first go on tuesday ... not too worried, yet !


Ok so I had my first infusion today, just sat in a chair while he nice nurses brought me no end of tea and biscuits.
All went fine and I feel perfectly normal so far (so good).
__________________
Crohn's Diagnosed : 12/07/12
Been on : Budesonide (some relief but not enough).
Switching to : Azathioprine and started Infliximab 14/08/12
Juicing every morning.
Taking vitamin D spray
Multi vits & iron
And Probio 7 probiotic.
.

Being given a "drugs rest" from Aza - 17/9/14

Last edited by Beach bum; 08-14-2012 at 10:06 AM. Reason: update
08-14-2012, 11:38 AM   #1504
amyh
 
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I accidentally came a day early for my infusion. oops...
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Diagnosed with Crohn's June 2012
Mother of 2, Bonsai artist, oil painter
Search and Rescue K9 handler
Graphic Designer
immune to Remicade
currently in remission
08-17-2012, 10:28 PM   #1505
cmichael
 
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Location: Chicago, Illinois

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Had my first infusion of remicade today. They checked my temp and bp every 15 minutes. No instant feeling of energy or healing yet. My bleeding even even seems a little worse today but it could be from sitting on by but for too long today. I;m keeping my fingers crossed for good luck and speedy healing. Like another member they even offered me a snack! The only negative was seeing the people in worse shape than me although it certainly reminds me how lucky I am.
__________________
Diagnosed in 1978 at 16
1 resection in 1993
Presently on Pentasa, 8x500 mg per dayand 2 packets of Cholestermine per day
vitimans B and D
Started Remicade 8-2012
08-18-2012, 01:46 PM   #1506
SarahAnne
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cmichael - Good luck! Some people can feel a difference in their symptoms after the first few days, but for most it usually happens around the third dose or so. Hope it helps for you!
__________________
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
08-22-2012, 06:37 PM   #1507
ddevanie
 
Join Date: Aug 2012
Location: Enola, Pennsylvania

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My next remi is Friday and then the next one is Oct 19 th. I don't mind the chair reclines and you are offered a snack and a heated blanket. The nurses in the remicade room are awesome.

Last edited by ddevanie; 08-24-2012 at 06:17 AM.
08-23-2012, 11:40 PM   #1508
D's Mom
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My son is 17 and in remission after 6 doses of Remicade. He is so so exhausted after his treatments. Concern--he is having a side affect that his Pediatric GI says he has never heard of-his first treatment he had pain up his arm, the next treatment the pain went up his arm to his neck. At yesterday's treatment he had pain in his legs (its not muscle spasms but he complains about it being deeper in his "veins"). He had trouble sleeping all last night-said he felt his heart beating throughout his whole body and veins. Anyone ever had this happen? Thank you.
08-24-2012, 01:00 PM   #1509
Mama & Mac
 
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Join Date: May 2012
Location: Pefferlaw, Ontario

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Hello everyone, will be starting remicade again very soon,
Just had a resection july23/12 now I have a post surgery infection and am hooked up to a vac system, unable to start remicade until the wound is closed, hopping that will happen soon....anything I can do before starting that might help?
__________________


Medication regimen:
Vitamin d3, 5000 iu, entocort 15mg,codeine 60mg, cipro 1000mg per day, iron infusions, b12 injections, humira.
08-28-2012, 05:15 PM   #1510
Beach bum
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The only negative was seeing the people in worse shape than me although it certainly reminds me how lucky I am.

I had my second infusion today , it all went well again , but I did have the pleasure of sharing my room with a couple of people who insisted on swapping really scary horror stories about the ops ect they had been through. ( It all seemed like a game of top trumps - but I know we all have different ways of coping with stuff, maybe that is theirs ).

I also know everyone is different so those things may never happen to me , but I must admit I had a awful "this could be me in a few years time" moment .

09-01-2012, 04:14 PM   #1511
hope hope
 
Join Date: Aug 2012
Location: algiers, Algeria

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i still wating for remecade but it seems i will not get it
we r sufering here
09-02-2012, 05:08 AM   #1512
cansi1
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Location: cambridge, United Kingdom

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Hi, I have been on Infliximab(Remecaid) with Azathioprine for about a year now and although the Crohns symptoms are under control i am finding that i get infections really easily and really regularly. I am on some strong antibiotics at the moment for tonsilitis and sinus infection but even with these it will take several weeks for the infection to clear. has anyone else experienced this? I've also developed pain in my wrists and can't put any weight on my wrists at all - anyone else had this?? My GP and consultant are being very slow about responding to my concerns so getting a bit frustrated!!
09-02-2012, 05:36 AM   #1513
hope hope
 
Join Date: Aug 2012
Location: algiers, Algeria

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its common between people have crhon and have developed pain in ur wrists
just keep walking
09-03-2012, 03:12 PM   #1514
laurajh
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Im having my 1st infusion of Infliximab tomorrow dont know wether to be excited or scared its been a long time coming for me.
09-03-2012, 03:29 PM   #1515
hope hope
 
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Location: algiers, Algeria

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i think u have to be excited
09-03-2012, 03:31 PM   #1516
cansi1
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Hi laurajh, definitely don't be scared the infusion doesn't hurt at all, in fact it's really nice to have a couple of hours doing nothing! I take my kindle and read,but there is usually a telly and of course the other people having infusions to talk to. don't expect immediate results, it took til the third infusion for me to feel the benefits but once it does kick in it will sort out the tiredness, diarrohea, cramping pains etc. The only thing I have noticed is that I get infections more easily and you do have to do something about them straight away because your immune system isn't go to do it for you-you will be offered a flu jab so take it! hope all goes well for you!
09-03-2012, 03:52 PM   #1517
laurajh
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Hi thanks cansi1 I soooo can not wait for those benefits :-) forgotten what it feels like now. Will let you know how it goes.
09-04-2012, 08:04 AM   #1518
Niklovely
 
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Hi everyone! I'd like to join.

I get my third dose of Remicade on Monday, which also happens to be my birthday!

I got my first one while being treated in the hospital for a really bad flare up and then I got my second one two weeks after that. I'm on a 2,4,6 then we'll see schedule.

I took Claritan, Tylenol and Solumedrol as pre-meds. The infusion is a breeze for me, don't get tired or anything like that. After my first infusion, I still had some nasty symptoms, a handful of bloody bowel movements and such for a handful of days. And after my second infusion, I noticed some mild stomach pain and one instance of diarrhea, but other than that, everything is back to normal, well, as close to normal as can be.

I have a question: Does anyone eat whatever they want? And if so, how soon after your first few infusions did you start eating that way? I'm not planning on eating whatever I want, but I'm anxious to add new foods into my diet. I'm still on a low residue diet, although I'm adding new things in very very slowly. I have noticed that the more spices or flavor a food has, the more it seems to bother me.
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"Your heart is free. Have the courage to follow it."
DX Crohns 07/2012
09-04-2012, 08:11 AM   #1519
JudithC
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Hi Niklovely, I'm still very careful about my diet and my tummy certainly lets me know if it disapproves. But now I can eat almost normally, still no raw fruits or vegetables, but can manage all other foods quite well. I'm French and love to cook with onions but Ohhhh they do give me awful gas for a few days. I am now recognizing most of my sensitive foods and it's been nearly 6 months on Remicade for me. Yes, you will be able to add new foods slowly, just keep notes on which ones bother you so you can stay away from that for a while. Good luck Glad to hear the infusions are going well.
__________________
Judy

now:
Remicade
Vitamin D
Vitamin C


tried:
Entocort
Pentasa
Prednisone
09-04-2012, 08:39 AM   #1520
Niklovely
 
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Hi Niklovely, I'm still very careful about my diet and my tummy certainly lets me know if it disapproves. But now I can eat almost normally, still no raw fruits or vegetables, but can manage all other foods quite well. I'm French and love to cook with onions but Ohhhh they do give me awful gas for a few days. I am now recognizing most of my sensitive foods and it's been nearly 6 months on Remicade for me. Yes, you will be able to add new foods slowly, just keep notes on which ones bother you so you can stay away from that for a while. Good luck Glad to hear the infusions are going well.
Thanks Judith for your info. Are you able to eat cooked vegetables? I'd love to be able to eat raw fruits and veggies since that's what my diet consisted of before getting dx'd with Crohn's.
09-04-2012, 08:41 AM   #1521
hope hope
 
Join Date: Aug 2012
Location: algiers, Algeria

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hi everyone day after day u give me inspiration
bye
09-04-2012, 08:42 AM   #1522
JudithC
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Yes Nik, I do eat cooked vegetables, but am careful about items with a skin, such as peas. It seems in small amounts it's ok. Careful though, through this chat area I've learned that each of us has a tummy that deals with Crohn's in it's own individual way.
09-04-2012, 08:43 AM   #1523
hope hope
 
Join Date: Aug 2012
Location: algiers, Algeria

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yes true u r right 100 percent
09-04-2012, 09:30 AM   #1524
thejdubb02
 
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Location: Santa Rosa, CA
I have my second infusion this Thursday. Looking forward to it actually. With how well the first infusion helped, I am just hoping everything stays the same after the 2nd.
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I haz moderate to severe, left sided ulcerative colitis. Working my way to finding relief.
09-04-2012, 09:43 AM   #1525
Niklovely
 
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Yes Nik, I do eat cooked vegetables, but am careful about items with a skin, such as peas. It seems in small amounts it's ok. Careful though, through this chat area I've learned that each of us has a tummy that deals with Crohn's in it's own individual way.
You are definitely right, it does seem everyone reacts differently to things.

I just don't know where to begin to add new foods. Should I add new low residue things or try to add cooked veggies? What veggies? I'm so confused.
09-04-2012, 10:00 AM   #1526
JudithC
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I'm smiling Nik, because I think the confusion is part of the illness, at least it is for me. Good grief, where do we turn next? Perhaps you should call your Dr. and ask if he/she thinks you're ready to add other items to your diet. Carrots and asparagus are some of my favorites and do ok with me. Just make sure they are very well done.

There is a section in this forum that deals with food and diets. Go ahead and take a peek there. You may find some interesting information in that area.

All the people here are just so great at helping each other out. Glad you found us.
09-04-2012, 10:28 AM   #1527
Niklovely
 
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I'm smiling Nik, because I think the confusion is part of the illness, at least it is for me. Good grief, where do we turn next? Perhaps you should call your Dr. and ask if he/she thinks you're ready to add other items to your diet. Carrots and asparagus are some of my favorites and do ok with me. Just make sure they are very well done.

There is a section in this forum that deals with food and diets. Go ahead and take a peek there. You may find some interesting information in that area.

All the people here are just so great at helping each other out. Glad you found us.


My doctor said I should be ready to add new things after my second remicade infusion and that was 8/13. But when I asked him what I could add, he said to start with a salad and to stay away from dairy for now.

I have checked the section you are referring to and there is a wealth of information there and I even posted a thread awhile back asking for some advice in relation to this matter but it seem as though I got a lot of answers suggesting low residue food items. I thought I would post here since there are remicade users here and I'd like to see what and how other remicade users eat.
09-04-2012, 11:27 AM   #1528
JudithC
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Wow, Salads? Really? I haven't had but a few bites of salad in a very long time. I suppose I'm just scared to try it at this point.

Seafood is good with me, almost any kind, but not fried. And chicken is not a problem at all. Your Dr. is right about the dairy, but it doesn't keep me away from my ice cream, just in small amounts. I've learned to chew my food really well.

Tonight we're having broccoli quiche, which does have some dairy, but then again, everything in moderation.

I'm sure others will pipe in soon with their thoughts on 'good eats'.
09-04-2012, 11:36 AM   #1529
Niklovely
 
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Wow, Salads? Really? I haven't had but a few bites of salad in a very long time. I suppose I'm just scared to try it at this point.

Seafood is good with me, almost any kind, but not fried. And chicken is not a problem at all. Your Dr. is right about the dairy, but it doesn't keep me away from my ice cream, just in small amounts. I've learned to chew my food really well.

Tonight we're having broccoli quiche, which does have some dairy, but then again, everything in moderation.

I'm sure others will pipe in soon with their thoughts on 'good eats'.
I'm patiently waiting for responses and appreciate any that come in.

Fried foods would give me problems even before I got dx'd so I'm definitely going to stay away from those. I do fine with chicken as long as its not marinated with a lot of spices (not necessarily spicy as in hot, but a lot of spices have been added for flavor). I'm okay with seafood and turkey and just recently added pork with no problem. I'm also okay with eggs.

I had some cooked green beans yesterday too with no problem.

As far as dairy, I have stayed away from it but just learned that one of the foods I just recently added has whey in it--no problem with that so far.

Other foods I eat pretty much follow the low residue diet:bread, crackers, pasta, mashed and baked potatoes, etc.

I have not had a salad because I'm nervous to add raw veggies, even though I'd really like to.
09-04-2012, 03:24 PM   #1530
sickinlk
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hey i had my first infusion today. all went well. i had palpitations and hot flushes but nothing serious. this eve i feel really tired....yawn.

nicllovely,
when he says add foods back he means add whatever you have avoided this past while. fruit veggies salads wheat? itll be trial and error as usual but you'll get there, try 1 thing at a time so you know which food bothers you. best of luck.

Ju
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