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JudithC said:
I've been fortunate to not have any reactions so far. My dose has been doubled however and we'll see what next Friday will bring. The infusion problem I run into is bad veins and I actually feel bad not only for myself but for the poor nurses who are trying so hard to find a vein and limit the hurt they are causing. Other question for all of you: Are you still limiting your diet?
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I've never limited my food, I just eat whatever. I get multiple bm's whether I eat nothing or everything (and I mean everything ... spicy, popcorn, etc, etc) It's the stress that triggers me moreso.
 
So question .... I had strep throat a few weeks back, got anitbiotics. Now think it's snuck back but my remi infusion is Tuesday. Do I get meds, and have my infusion delayed (in a BAD flare) ... or do I play dumb, get the infusion and get antibiotics day after treatment?
 
Foods that really bother me and I don't eat at all:
White bread, pizza dough, bagels etc
Popcorn
Sweet Potato
Coffee
Alcohol
Things I avoid because I was told to:
Nuts, seeds, raw veggies, fructose

I seem to tolerate chips and deep fried foods really well, but try to limit them, of course :)
 
Thanks ladies, it seems no matter how careful I am wikht food something triggers pain. Am in a flare right now and don't understand it. I am very careful, really don't have excessive stress at this time. If I don't eat, I hurt, if I eat VERY lightly it's ok, so I eat often and very lightly. Spinnychick, isn't any infection going to get worse with Remi? I think I read that somewhere.
 
JudithC said:
Thanks ladies, it seems no matter how careful I am wikht food something triggers pain. Am in a flare right now and don't understand it. I am very careful, really don't have excessive stress at this time. If I don't eat, I hurt, if I eat VERY lightly it's ok, so I eat often and very lightly. Spinnychick, isn't any infection going to get worse with Remi? I think I read that somewhere.
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Yes, I think the infection might get worse, but I've needed the remi since week 5 and this will be 8 weeks and I think I need the remi more than the antibiotics so I plan to get the remi, then go to doc for antibiotic. I dunno, this is all new to me and I'm probably doing something I shouldn't. :soledance:
 
You also probably need to get your Remi doses a bit closer together. Mine are now at 5 weeks, and next week will be my first double dose. If I were in your shoes, I would probably do what you are thinking of too. Do you know a nurse you could quietly talk to?
 
I asked my GI to put me at 5 week doses and instead he prescribed me with Imuran which 6 months ago he said was dangerous to me due to my genetic makeup and TPMT test results. I will ask a nurse friend off the record lol.
 
spinnychick said:
So question .... I had strep throat a few weeks back, got anitbiotics. Now think it's snuck back but my remi infusion is Tuesday. Do I get meds, and have my infusion delayed (in a BAD flare) ... or do I play dumb, get the infusion and get antibiotics day after treatment?
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I know for me when I had a UTI, the clinic just needed my GI's "ok" to proceed with the infusion while I was on antibiotics. I just told my coordinator ahead of time, and she took care of it all for me!
 
My GI still has me on a "low residue diet" so I havent re-introduced anything... she has also got me drinking meal replacements for one meal a day as well.

She also said that now im finished with the loading doses, we will start to tweak the frequencies of my infusions. She did say its common to change the frequency, and usually has to with at least 50% of her patients on remicade...
 
Thanks for telling me this 'thisisme' helps me not to worry so much to know this. Maybe I will try to meal replacements too.
 
The meal replacements aren't bad! It took me a few tries to find one that worked for me... I know that a lot of people like "Ensure", however it gave me a very upset stomach (it has lactose, and I do not tolerate it well!)... I also tried "Boost" and it was better, but still not the best. The best I have found have been our grocery store brand "Presidents Choice" nutri-total drinks, which are great. No upset stomach with them at all :)
 
what now eh?
my kid had chicken pox and the hospital don't want me to have my infusion. im immune as I had them as a child. any1 else had any experience with this?
ju
 
I have a question about Remicade.

I've noticed roughly about a week before my next infusion is due, my stomach starts hurting more, I'm barely able to eat, and I go to the bathroom about 3 times as much as I normally would. I get my infusion every 8 weeks.
Does this sound like it could be the Remicade wearing off? I was thinking about asking my GI to bump it up to every 7 weeks instead of 8.I also notice it takes more than a few days to kick in.Like closer to a week.
My experience with Remicade has been great so far.I like it so much better than Humira, I couldn't stand getting those painful shots. :( It has also helped me a great deal, more than Humira ever did.
 
Well, looks like my Remi treatment will delayed this week. Dr. prescribed antibiotics for possible UTI. What bad timing :(
 
Ds has had strep three times since starting remicade and has been on an abx through at least two infusions. As long as there was not a fever anymore his Gi was ok with it.
 
Going for 4th treatment today, insurance fell through but Remicade Coordinator managed to get it free for today. Started flaring 3 weeks ago so "looking forward" to the infusion and hopefully improved health.
 
spinnychick said:
Going for 4th treatment today, insurance fell through but Remicade Coordinator managed to get it free for today. Started flaring 3 weeks ago so "looking forward" to the infusion and hopefully improved health.
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That's awesome, hope it works really well :)
 
My appointment is in 3 hours. And I actually have a friend/coworker with UC who has arranged to have her infusion at same time so we have an "infusion date" lol
 
I get both. Sometimes I refuse the benadryl as it makes me super duper sleepy. Do you guys drive yourselves home or get a ride to and from?
 
I can't drive with the benadryl. Nurse said I may get used to it eventually though. Does everyone bring blankie, snacks, book, tablet etc? Do you guys have tv and movies?
 
spinnychick said:
I can't drive with the benadryl. Nurse said I may get used to it eventually though. Does everyone bring blankie, snacks, book, tablet etc? Do you guys have tv and movies?
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I bring my Iphone and my Kobo lol Oh, and a banana. My nurse covers me with a blankie and brings my the snak bucket haha

There is a tv with Netflix and Boxee(movies and tv shows) I have watched some ovies there*two movies one time ) and my nurse(who is awesome!) tries to work and not get drawn in lol
 
barely anyone at mine ever wants the tv on so I feel badly putting it on. Nobody really chats either, it's quite boring, alot of nappers haha.
 
I go early in the morning, and really only had another guy there once. I just asked if he minded me putting on whatever movie, and put it on.
 
spinnychick said:
I wish you lived near me, you sound like a fun infusion buddy lol.
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haha Me too!! My nurse is very chatty so we talk all morning lol

My step brother is waiting for approval to get started on his and I told him to try and book when I am in LOL

It is very relaxing and I go home and sleep, and have the day off work, so all in all, not too shabby haha
 
Yes. He was diagnosed about a year ago. His brother has it too, but was diagnosed about 6 years ago. At least it's nice to have people in the family to talk to that understand it :)

So, I guess IBD runs in their family quite a bit, where the only thing I have in my family is an uncle with celiacs.
 
Today is my 29th remicade infusion. Hooray!
Good thing I came to post this, I completely forgot to set out my premeds until I read a bit of this thread.
After my last infusion, I treated myself to cupcakes from the best bakery in town. Not a habit I want to start, but I think I am going today too.
 
I bring my blankie and my kindle. It's cold in there! You're right no one chats very much, and I've been tired lately so sometimes I just close my eyes for a while. At this point I'm a really hard 'stick', so nurses are at alert when they see me walk in. I can almost hear their minds going "Oh no, it's Judy!". LOL
 
JudithC said:
I bring my blankie and my kindle. It's cold in there! You're right no one chats very much, and I've been tired lately so sometimes I just close my eyes for a while. At this point I'm a really hard 'stick', so nurses are at alert when they see me walk in. I can almost hear their minds going "Oh no, it's Judy!". LOL
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Lol! I had tough skin one day haha That wasn't pleasant, but she got it in the other arm, and then I noticed it was bleeding after awhile.
 
spinnychick said:
I can't drive with the benadryl. Nurse said I may get used to it eventually though. Does everyone bring blankie, snacks, book, tablet etc? Do you guys have tv and movies?
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I bring my tablet. They have free wifi so I catch up on shows that I missed or a movie that iv missed. The infusion place I goto provides crackers, candy, jucie or water. Beacuse of recent weight loss they are always trying to feed me.:ylol2:
 
I get benadryl and solu-medrol IV before the infusion.....didn't get it when I first started, but after I had strep 2x in 2010, along with a full-body rash (probably gutatte psoriasis - strep-induced), my GI doctor ordered the pre-meds. I was able to request the benadryl IV...I bounce back from that much quicker than pills!

I bring my kindle, before pre-meds I used to bring needlework but now I usually nap and listen to the TV (individual tvs for each chair).....I also usually stop and grab lunch on my way, as my appointment is set up for 1230pm.

I drive myself after, no problems and I have an hour drive home....I have even gone to work, when I had to make my appointment in the morning instead of just after lunch.

I don't have any infusion buddies, just chat with the nurses and the doctor when he comes in. Haven't even seen my own GI doc since my last scope in the fall...whidh is a GOOD thing! lol...I am able to get in to see her on short notice if needed...just not needed!
 
I always bring my laptop, blankie, headphones and kobo! The people at my clinic generally will watch netflix together (at the nurses demand! lol) but I just like zoning out into my own little world. No one really chats much.

I get super sleepy after the benadryl... I usually sleep all night once I get home. I got a ride the first time, but i drive myself now. Im only a few minutes from the clinic, so its not a long drive... but I am usually pretty exhausted
 
spinnychick said:
barely anyone at mine ever wants the tv on so I feel badly putting it on. Nobody really chats either, it's quite boring, alot of nappers haha.
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I watched bones on TV, ate a snack, used my IPad, and had conversation with the nurses, my mom, and a guy named Ed. I was very nervous so I couldn't focus on anything for long! LoL The nurse assured me I'd find a routine that worked for me! And you will too. Remember most people want to be social but most people are afraid to initiate. :)
 
had my infusion postponed because I thought my son had chicken pox. it wasn't chicken pox just a viral thing so now im starting to flare. makes me appreciate the remission I was in. roll on Monday!
ju
 
I had my second infusion last week, but have been in a pretty bad flare this week.:(. Overall since I have started the remicade I have been feeling pretty good. Do you guys and gals know if this is normal? I know its diffrent for everybody, but any of you had this experience while going through first few treatments? Any advice would be great.
 
Hey all,
Well I started remicade Monday before last so 9 days ago,
All went really well, even starting feeling human again, today ended up in the Emerg dept of the hospital, suffering from a delayed reaction, from my waist up became seized, I mean I am unable to move my shoulders, arms, hands, fingers, and my jaw without being in the worst pain I have ever felt, I was given and IV steroids and pain meds, I am feeling really well let down again, I was really really wanting this to work, I was told I will be being taken off remicade, that's it.
I don't even know what to say, I just needed to get it off my chest. Has anyone else had this problem, did it go away, how long is this going to last, what was the next step, I think he will now want to try Humira, has anyone gone from one to the next and if so, how was it, the transmission I mean. God I'm so let down!
Anything anyone can tell me would be great! Thanks for hearing me out:)
 
Mama & Mac said:
Hey all,
Well I started remicade Monday before last so 9 days ago,
All went really well, even starting feeling human again, today ended up in the Emerg dept of the hospital, suffering from a delayed reaction, from my waist up became seized, I mean I am unable to move my shoulders, arms, hands, fingers, and my jaw without being in the worst pain I have ever felt, I was given and IV steroids and pain meds, I am feeling really well let down again, I was really really wanting this to work, I was told I will be being taken off remicade, that's it.
I don't even know what to say, I just needed to get it off my chest. Has anyone else had this problem, did it go away, how long is this going to last, what was the next step, I think he will now want to try Humira, has anyone gone from one to the next and if so, how was it, the transmission I mean. God I'm so let down!
Anything anyone can tell me would be great! Thanks for hearing me out:)
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woah, that's scary mama,
I cant imagine they will proceed with the remicade now. I know humira can have less reactions because it doesn't contain the mouse protein in it. although you will have to inject yourself and that can be hard for some. god love ya! I hope you get some relief soon.
ju
 
Good luck Mama. I may end up having to pull a switcheroo to humira, but not just yet. Insurance is playing games with me but I got my last remi dose free as a sign of good will I guess. Hope you feel better soon
 
rrehmus said:
I had my second infusion last week, but have been in a pretty bad flare this week.:(. Overall since I have started the remicade I have been feeling pretty good. Do you guys and gals know if this is normal? I know its diffrent for everybody, but any of you had this experience while going through first few treatments? Any advice would be great.
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I felt a bit better after all 3 of my first treatments. This time not so much, had pains in kidney area?? during infusion and sportacially since. Have lost 6 pounds in 3 days and feeling weak and not good at all. That all being said, I am also now taking Imuran which is new for me so maybe that is causing some of the issue? It is definetely different for everyone and that makes it so much harder for me personally to learn and acquire knowledge. It would be easier if there was a step by step book or a "crohn's for dummies" or something lol. :dance:
 
spinnychick said:
I felt a bit better after all 3 of my first treatments. This time not so much, had pains in kidney area?? during infusion and sportacially since. Have lost 6 pounds in 3 days and feeling weak and not good at all. That all being said, I am also now taking Imuran which is new for me so maybe that is causing some of the issue? It is definetely different for everyone and that makes it so much harder for me personally to learn and acquire knowledge. It would be easier if there was a step by step book or a "crohn's for dummies" or something lol. :dance:
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Thanks spinny. I think I just need to give it some time to become fully effective before I start jumping to conclusions. I hope you start feeling better soon and wish nothing but the best for you.:)
 
I got word today I might be joining the Remicade Club soon. I'm excited to hopefully feel better but scared as well. Thank you all for this thread, everything you have shared means the world to me.
 
It really is great to find the support/information/sharing on this thread and the forum in general. It's a tough disease to deal with at times and having all you online friends is quite awesome to say the least so thanks to each and every one of you for all you bring here.
 
I can finally join this thread! I'm starting next week and have my pre-infliximab blood test tomorrow. Right now I'm excited because I have waited so long for this. I reckon next week I will be a bit nervous though!
 
Good Luck LittleMissValentine and AckMac!! ... Theres definitely lots of good info on this thread, and its a great source to ask all those endless questions we never seem to have enough of!
 
Hi everyone.
I just joined this great group, and am looking forward to exchanging info.
I had my first infusion last thursday, and the stress of not knowing what was going to happen, was much worse than the infusion itself.
I havent noticed any improvement yet, but I am hoping maybe the next infusion will show some. I am a side effects dream, but got lucky there too. Other than swelling of my ankles, everything went fine. The swelling might not be because of the med.
I will be having my next one in 2 weeks, then 6 weeks, then every 8 weeks, if it works. I have learned not to hope for a miracle, as I have been on every crohns med. known to man! LOL
Well I hope to hear from you soon, and I hope everyone is having a pain free day!!
Thanks, Linda
 
Welcome Linda!!!
Hope the "loading doses" are treating you well! I know that my GI told me not to really expect much improvement until my 3rd infusion... and that is when I started seeing improvement myself!

Good luck with everything!
 
xX_LittleMissValentine_Xx said:
I can finally join this thread! I'm starting next week and have my pre-infliximab blood test tomorrow. Right now I'm excited because I have waited so long for this. I reckon next week I will be a bit nervous though!
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Good Luck Holly. I was really nervous for my first one, but once you realize it's going to be okay, it's fine. :ycool:
 
Number two tomorrow! Hoped to get home early and get good sleep, but that wasn't in the cards. Didn't get out of work til after 4. Just wish I could turn off my brain! Who knows maybe ill nap during my infusion! I worry about snoring tho! LoL
 
Are you allowed to drink alcohol with it? (not during the infusion obviously! :p ) Its two of my friends bday night out the weekend after (twins). I would like to have a good night out coz I haven't been out in ages but I will take it easy if that is whats best.
 
xX_LittleMissValentine_Xx said:
Are you allowed to drink alcohol with it? (not during the infusion obviously! :p ) Its two of my friends bday night out the weekend after (twins). I would like to have a good night out coz I haven't been out in ages but I will take it easy if that is whats best.
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Oh gosh I sure hope so! lol...since I like my glass of wine (and then some at times!).....still here after over 7 years of it....
 
I've read that smoking has helped Crohn's. Really!!!! Probably why mine reared it's ugly head 6 months after I quit. That said, does anyone use Nicotine patches, which is said to sometimes help.
 
I'm a former smoker and by no means an expert on smoking or crohn's but quitting smoking is advantageous to anyone's health, so congrats on quitting. As far as the nicotine patch, if you don't need it, why pump extra chemicals and a possible dependency into your system?
 
Judith,
im a former smoker. I quit 2 years ago and had my 1st symptoms of UC a few weeks after I quit. I used nicotine patches during that time and noticed no difference. fast forward to sep last year and I started smoking again and at the same time I started remicade.
I thought the remicade was a miracle cure for me then. so I gave them up again a few weeks ago and bam symptoms back again. coincidence? I think not. it was the smoking all along that put me into remission. I feel that if you are a former smoker the patches wont do, but you could try. there those electronic cigarettes now too you could try.
I had an infusion yesterday and im afraid the remicade doesn't work for me. gotta start thinking about surgery or going back on the ciggs. which would you prefer?
ju
 
Speaking of surgery - I asked my doc if we could just stop playing around with drugs that don't work and if he can just open me up and cut it out lol. He said surgery "isn't an option" for Crohn's as it will just grow back. I thought some people had success with surgery.
 
yes because Uc only affects the large bowel so it can be cut out and the Uc cured. its different to crohn's because if you have surgery it probably will show up somewhere else in the bowel and even return at the site of the surgery.
ju
 
Sickinik, now I don't feel so crazy, thank you. What we need to know is what it is in a cigarette that helps the Crohn's/Colitis and find out if it is available as a medicine. I would prefer to never smoke again, although I will be trying out the patches, just to see if they make a difference. Need to to some research. Please let me know folks if Im just spinning my wheels here.
 
I know me too. I hate smoking and the smell and the taste and I wasn't myself when I was smoking. if it was possible to have just a few drags a day to keep it at bay and not go on them full time it would be great. it would take some willpower.
yes the should definitely do a study on what's in smoking ciggs that helps us.
ive read that people that never smoked have brilliant results with NRT.
ju
 
that's a very interesting article Judith. thanks.
good to know that they are trying to develop a safe nicotine therapy for UC. too bad about the crohn's though.
ju
 
My HUBBY had about ... 5 of these treatments in the beginning and so thank goodness that he NO LONGER has to go thru them but I am THANKFUL for the INSURANCE that we have as they PICKED UP all of it 100% !!
 
This is for Sickinlk, I have been diagonized with UC since 2003. There is quite the correlation between smoking and UC. Every time I tried to quit ,within wks I would flare. When I was 1st diagnozed in 2003 I had quit 9 mths previous, my GI specialist said that there was a connection between the two , so I started up again. Then in 2011 I crushed my ankle at work ,stopped smoking and what do u know .yup another major flare. So bad that I ended up having most of my colon removed and a ostomy bag for 7 mths. Im back to having the reconnection but am still on meds (IMURAN) because they now say it may be Crohns. I am still smoking , not a lot but I will not quit because I know what will happen and I never want to be in hospital again. I know that its one of two evils ,but I will take that chance. I certainly do not promote smoking ,its just my situation . I hope success to all in what ever choices they make.
 
cecilialynn said:
This is for Sickinlk, I have been diagonized with UC since 2003. There is quite the correlation between smoking and UC. Every time I tried to quit ,within wks I would flare. When I was 1st diagnozed in 2003 I had quit 9 mths previous, my GI specialist said that there was a connection between the two , so I started up again. Then in 2011 I crushed my ankle at work ,stopped smoking and what do u know .yup another major flare. So bad that I ended up having most of my colon removed and a ostomy bag for 7 mths. Im back to having the reconnection but am still on meds (IMURAN) because they now say it may be Crohns. I am still smoking , not a lot but I will not quit because I know what will happen and I never want to be in hospital again. I know that its one of two evils ,but I will take that chance. I certainly do not promote smoking ,its just my situation . I hope success to all in what ever choices they make.
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that sucks big time. I mean if you properly googled remicade and some of the stories out there smoking an odd cigg doesn't seem that bad. I wouldn't promote smoking either and this is my own opinion. so if you were faced with the possibility of loosing your bowel and all else has failed you, smoking is worth a try. and for all who have never smoked the patches are proven to be successful. thanks for the input Cecilia.
ju
 
Really interesting that nicotine may actually help offset flares with UC. As far as the remicade, I just had 4th infusion 2 weeks ago and am already having crazy pains down both sides, losing weight, crazy bm's. Has anyone else had the remi "wear off so quickly"? Is it possible it isn't working already?
 
spinnychick said:
Really interesting that nicotine may actually help offset flares with UC. As far as the remicade, I just had 4th infusion 2 weeks ago and am already having crazy pains down both sides, losing weight, crazy bm's. Has anyone else had the remi "wear off so quickly"? Is it possible it isn't working already?
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you really shouldn't be getting symptoms so soon, but its early days yet. had you any relief with the loading doses.
 
My son who was recently diagnosed with Crohn's is starting remicade on Wed. His doctor believes in the Step-down approach and we are going to try it. He was categorized as med - severe case and has been out of school for 5 weeks. He just returned this week after a week of high steroid dose kicking in. Praying that remicade works for him.
 
Here's hoping that the remi works for both of your sons. Illness always seems worse when it's a child, so my heart goes out to both of them, and to you :)
 
I have a question.
You know how you can have a delayed reaction after the infusion?
Is this like with food reactions when exercise can kinda bring it on/make it worse?
Having a reaction is my only fear about it at the moment. I try to go to the gym twice a week so when I go next week it will be two days after my first infusion.
Just wondered if anyone had any experience for this.
 
xX_LittleMissValentine_Xx said:
I have a question.
You know how you can have a delayed reaction after the infusion?
Is this like with food reactions when exercise can kinda bring it on/make it worse?
Having a reaction is my only fear about it at the moment. I try to go to the gym twice a week so when I go next week it will be two days after my first infusion.
Just wondered if anyone had any experience for this.
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I haven't had any reactions yet and I have gone for a run the day of and the next day. Try not to worry too much.
 
My hubby gets after me for exercising daily and thinks it eats up what little strength I have some days. Is exercise beneficial to staying healthy with CD?
 
spinnychick said:
My hubby gets after me for exercising daily and thinks it eats up what little strength I have some days. Is exercise beneficial to staying healthy with CD?
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I think as long as you are able to eat enough to fuel yourself its fine. I cut down on exercise when I'm flaring and not able to eat very much.
 
My GI greatly approves of me going to the gym three times weekly.
I give it a miss for a few days when having Remicade, find it is too tiring when I already feel tired from the infusion
Exercise is considered to be good for Crohn's patients and I feel better for going.
Trysha
 
I felt like that before my first Remicade infusion in January and nothing happened.
Afterwards I was starving hungry, a feeling I have not experienced in the last three years.
Felt tired the next day.
I have just had the third infusion and feel good.
It is natural to feel a little afraid with something new.
The majority of people say they are feeling better and some have been receiving Remicade
for as long as seven years without side effects. It is a remarkable biologic and seems to be very effective for many crohn's patients.
Good luck tomorrow, take plenty to read and perhaps a little snack.
Feel better soon
Hugs and best wishes
Trysha
 

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