Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Hi all - first post here- I have been on Remicade since fall 2005 - after dealing with (multiple) fistulas for @2 years, on-again, off-again symptoms, 6MP, steriods etc.....you all know the drill....

Anyway - shortly after starting the Remicade, my fistuals went away! Woo hoo!.......I go every 8 weeks for an infusion, and am currently on the lowest dosage. One 'side effect' I have had is weight gain - for the first time in my life I have to watch what I eat not for exacerbating symptoms, but to try not to put too much weight on!

One thing that has developed over the last year or so are rashed - more like a dermatitis or psoriasis.....and more so over the past month....a royal pain in the neck! My dermatologist doesn't seem to think anything of it - I will be checking with my GI on my next visit.

Next infusion is April 26th.......Anyone else here from NY who goes to Albany Med?
 
Has anyone NOT noticed a significant change in symptoms? I just had my 3rd infusion yesterday, and while I am a bit better than I was before I started Remi...I am by no means in remission. At all. I thought this would be the ticket, and I think I'm going to be sorely dissappointed.
 
I think each person may react differently....I would give it some more time - if you are seeing some improvement, it may be that you either need more time and/or a dosage change.....
 
Has anyone had an increase in symptoms of skin problems, or havwe them show up after being on Remicade for a while?

Waiting for my dermatologist office to open back up from lunch - not so lovely rash all over me right now ugh!
 
I am getting my infusion right now. All is going well. Sorry I havent been around much. I am in the city visiting family and friends for a few days. I'll be a bigger presence when I get back home. The remicade is working awesome for me so far. I get to see my specialist tomorrow and I cant wait to tell him the good news.
 
Glad to hear that Lydia!....I go for my next infusion in 2 weeks.....that is my 'me time' lol.....although I usually don't get to take a nap - too busy in the place!
 
Had my GI appt today...he's put me on methotrexate to go along with the Remicade to see if that might help a bit more than just the remicade alone. Crossing my fingers this will be the miracle combo.
 
Hi all,
Will be a new member of the club since I'm changing from Humira to Remicade - having my first infusion the 27th April. Hoping for wonders.

/Uli
 
My skin has actually improved since the remicade and prednisone. I had horrible cystic acne and seborrhea dermatitis with this flare and it has cleared right up since I started my meds.
 
Lydia said:
My skin has actually improved since the remicade and prednisone. I had horrible cystic acne and seborrhea dermatitis with this flare and it has cleared right up since I started my meds.
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My current flare is the same. Bad scalp dermatitis/psorsis and acne. First time it has been like this. It is very weird!
 
Well - was able to get my infusion today, even though I was coughing up green crud this morning, AND have no voice.......the infusion clinic I normally go to is 'closed' - so I had to go to the Apherisis unit (dialysis)........for the first time. OMG...I ~really~ hope a new PA/nurse is found for the infusion clinic!....nothing against the nurses today - but my appointment was for 1pm.....got there to check in, had to wait close to 10 minutes for the receptionist to finish with another patient.....went right over to a chair, then waited....had to answer the 'usual' 50 questions.......had the IV site started, then waited....and waited....AND WAITED.......didn't get my infusion started until after 2pm!!!!!!!.......I schedule my appt for 1pm, because normally I get done by 330-ish, am in the car by 4pm and am able to get to my daughters' daycare before 530pm, which is when they close......

I didn't get out of the until about 445pm!.......with an hour drive to get my daughter.....GRRRR......thankfully my Mom called me around 330pm and offered to pick my daughter up, so I didn't have to worry about it.....but now I have to take additional time off to make sure I get done in time!

Oh - and they didn't have a standing order for my B12 shot.....I told the nurse I get one, but she didn't realize I meant I get one during my infusion!...so, at the end she called the GI clinic, they were going to authorize the B12 for today, but that would have taken another 30 minutes to come up from the pharmacy! (At the infusion clinic they ahve the meds right there!).............

I think I am done ranting.....I can't yell since I have no voice lol.....I did stop at the Urgent Care Clinic on the way home though and was able to get a prescription for some hycodone cough syrup.....was actually in and out in 20 MINUTES!.....figure since Mom had Tori anyway.....AND the pharmacy is across the street! ......

ok, NOW I am done! lol
 
I am sorry your infusion appt sucked. Good thing we only need this stuff every 6-8 weeks.

I am still doing awesome. I am so glad I decided to do this.
 
I've been on Remicade for 1 and a half years now.. I don't really notice any change though.

I really dread going to my appointments every 8 weeks. and my nurse is not that great. Shes pretty bad with the IV part of the infusion... Actually this week she got it the first try.... And she also has a broke hand with a cast.... who would have thought that she got better when she had a broken hand?

What do you notice when it "kicks" in?
 
I go today for my infusion. I just switched for 8 wk to 6wks. My Dr hopes that will help get me off of entocort. It is a pain to leave work early so much though. Good thing is a switched from getting it at hospital to a dr office and cut the time it takes by 1.5 hrs! I have been on remi for almost 3 yrs
 
2nd infusion of Remicade due on tuesday, but wow - my stomach has spooled down its activity a lot, from 6-10 bm's daily on humira to 2-3 on Remi,since the first treatment - thats really nice. Hoping this trend will continue. Almost close to normal conditions in my book, please GOD!!!!!!!

/Uli
 
If remicade did not give me ANY improvement over a year and a half, I dont think I would take it anymore.

I go for my 3rd infusion this Wednesday. I felt great until I got a stomach flu on Sunday. I am still not 100% from that.
 
Had my 4th infusion last Friday. I could tell it was close to time because I started feeling a little discomfort for about 3 days before. Now I feel great again other then run down from low hemoglobin and Iron. Did my 2nd Venofer infusion today. First time I ever had a nurse miss the vein and hit a tendon. Ouch! Only 4 more iron infusions to go. Every Friday for the next 4 weeks.
 
I was on remicade for 3 years out of which a year and a half it helped me a lot then it stopped working and I switched to Cimzia. one will know when it kicks in because the CD symtoms improve. My nurse was a male and he was great put your mind at ease.
 
Chronic cough and respiratory issues with Remicade

Just had my 4th Remicade Infusion. Couldn't make the 8 weeks unfortunately flaring at 6. Great news is that Remicade is helping my Crohns. Bad news is that I am now dealing with chronic respiratory issues. Feels like I am breathing through a straw when I go to sleep. I just had a chest xray and will be seeing pulmonologist for a respiratory consult. It's too early to speculate, but I'm scared to death of what it could be and if Remicade is causing it. I don't want to stop taking Remicade because it is helping my Crohns, but I'm fearful that something is terribly wrong. Has anyone else experienced similar issues ?
 
Gurgle.....I have allergies, and on top of that always seem to have a stuffy nose, something in my sinuses.....had strep in March, then an upper resp. infection which I am STILL getting over the last of the cough/nasal drip etc....

Had pneumonia a few years ago now, nothing else too major - more annoying than anything.
 
GurgleGurgle said:
Just had my 4th Remicade Infusion. Couldn't make the 8 weeks unfortunately flaring at 6. Great news is that Remicade is helping my Crohns. Bad news is that I am now dealing with chronic respiratory issues. Feels like I am breathing through a straw when I go to sleep. I just had a chest xray and will be seeing pulmonologist for a respiratory consult. It's too early to speculate, but I'm scared to death of what it could be and if Remicade is causing it. I don't want to stop taking Remicade because it is helping my Crohns, but I'm fearful that something is terribly wrong. Has anyone else experienced similar issues ?
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Hi Gurgle - I was on Remicade for 3 years, out of which 2 years were great until I developed an alergic reaction to the Remicade and switched to Cimzia.
While on remicade I developed shingles and upper respiraytory infection but with some antibiotics the respiratory problems went away. One trick I've learened was to take anti histamine a day before the remicade and for a week after (the non drowsey) and it heleped a lot.
best wishes
acg
 
remicade and respiratory issues

One more observation about remicade and respiratory issues, that I was extra extra carefull to be in a dust-free environment as it makes sense. for example, when I had some construction and painting done in the house, I always wore a surgical mask and it helped a lot
best
acg
 
hello everyone, i was diagnose 11/22/09 and my GI doc put me on 40mg of Predisone. and when i was down to 5mg of Predisone he put me on 100mg of Imuran. Well i was only on 100mg of Imuran for 3 weeks then i started to have bad side effects with Imuran so my GI doc took me off of it and was going to put me on another med when i went to visit him 2 weeks after so for that 2 weeks i was off all meds. Well when i went in he wanted to put me on Imuran's cousin 6MP but i was too scared to take this medicine cuz if it was the same med as Imuran i didnt want those bad side effects to come back again so i decided not to take it. Eeekk i know probably a bad choice but was too scared of it so ive been off of allllllllll medicine for the last 3months just putting up with the small cramping i always had. But the cramping is getting a bit worse(only when i eat) but still not using the washroom a lot(i never did). So i went to my family doctor cuz i started to get stiffness in my hand joints so she sent me off to get blood work and an xray of the hand and told me to make another appointment with my GI cuz of my cramping and a bit bleeding. She looked at my chart from my GI doctor and he had put in about Remicade use if the 6Mp didnt work. Now can anybody tell me what choice they would make between 6MP or Remicade?? I read up on this Remicade and it was talking bout how it can cause Lupus, has anyone had a problem with getting lupus on this drug?? i know i need to be on a drug for my Crohn's so it doesnt get bad but all these drugs are just sounding way to harsh i just dont know what to do :(


im sorry if this is too long and if it goes here or not, sorry if it doesnt :shifty-t:
 
Thanks Paso and ACG. I have an appointment with a Pulmonologist on Monday to get some insight into what is going on. I always take an antihistamine before and after my Remicade infusion. I have spring allergies, but can honestly say that I've never had these types of symptoms before. This constant coughing and breathing difficulty is sapping my strength. Thanks again for your thoughts and suggestions. Kevin

acg101 said:
Hi Gurgle - I was on Remicade for 3 years, out of which 2 years were great until I developed an alergic reaction to the Remicade and switched to Cimzia.
While on remicade I developed shingles and upper respiraytory infection but with some antibiotics the respiratory problems went away. One trick I've learened was to take anti histamine a day before the remicade and for a week after (the non drowsey) and it heleped a lot.
best wishes
acg
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6mp and remicade

minky23 said:
hello everyone, i was diagnose 11/22/09 and my GI doc put me on 40mg of Predisone. and when i was down to 5mg of Predisone he put me on 100mg of Imuran. Well i was only on 100mg of Imuran for 3 weeks then i started to have bad side effects with Imuran so my GI doc took me off of it and was going to put me on another med when i went to visit him 2 weeks after so for that 2 weeks i was off all meds. Well when i went in he wanted to put me on Imuran's cousin 6MP but i was too scared to take this medicine cuz if it was the same med as Imuran i didnt want those bad side effects to come back again so i decided not to take it. Eeekk i know probably a bad choice but was too scared of it so ive been off of allllllllll medicine for the last 3months just putting up with the small cramping i always had. But the cramping is getting a bit worse(only when i eat) but still not using the washroom a lot(i never did). So i went to my family doctor cuz i started to get stiffness in my hand joints so she sent me off to get blood work and an xray of the hand and told me to make another appointment with my GI cuz of my cramping and a bit bleeding. She looked at my chart from my GI doctor and he had put in about Remicade use if the 6Mp didnt work. Now can anybody tell me what choice they would make between 6MP or Remicade?? I read up on this Remicade and it was talking bout how it can cause Lupus, has anyone had a problem with getting lupus on this drug?? i know i need to be on a drug for my Crohn's so it doesnt get bad but all these drugs are just sounding way to harsh i just dont know what to do :(


im sorry if this is too long and if it goes here or not, sorry if it doesnt :shifty-t:
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Hi Minky, sorry to hear about your pain and suffering and i hope you get better soon.
there is lots of info on 6mp on the internet, but generally 6 mp is an immune system modulator drugs (like imuran) which lower ones immune system. in CD and UC, our immune system is over active. Remicade is a bialogical med which is considered an antibody that blocks signal from our digestive system.
here is a site that might shed some light
Please dont hesitate to ask any question
best wishes
acg
 
I was on it at one point but due to financial reasons and changes in my insurance, another coming when i relocate back to Chicago in August, I have been unable to get back on Remicade. Hopefully I'll start again soon!
 
Hi,
I got my last loading dose (3rd) iv this thurs, seems to be working and no immuno probs so far but am putting on weight at a stupid rate of knots, 7lb in 2 weeks, is this normal???
 
eclaires said:
Hi,
I got my last loading dose (3rd) iv this thurs, seems to be working and no immuno probs so far but am putting on weight at a stupid rate of knots, 7lb in 2 weeks, is this normal???
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Hi, glad all went well. I did not have the weight gain experience.
Best wishes
acg
 
eclaires said:
Hi,
I got my last loading dose (3rd) iv this thurs, seems to be working and no immuno probs so far but am putting on weight at a stupid rate of knots, 7lb in 2 weeks, is this normal???
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If your flare is healing then you will start to gain weight because you can actually absorb all the nutrition in your food. If your body was in starvation mode for a long time, you will pack on the weight fast. I put on 9 lbs in 2 weeks. Remicade put me in remission really fast. My fistulas closed in about 4 days and I have been symptom free since then. You also may be eating more because you werent able to enjoy food as much before the remicade.
 
Lydia said:
If your flare is healing then you will start to gain weight because you can actually absorb all the nutrition in your food. If your body was in starvation mode for a long time, you will pack on the weight fast. I put on 9 lbs in 2 weeks. Remicade put me in remission really fast. My fistulas closed in about 4 days and I have been symptom free since then. You also may be eating more because you werent able to enjoy food as much before the remicade.
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I like your reasoning very much. I know that once I could start eating things that I actually like I started to gain weight. It took me the better part of the year or remicade to get to that point
best wishes
acg
 
Yep - I gained weight too once I started the Remicade.....more than I wanted actually! Fistulas healed up pretty quickly also.....
 
Hi everyone!

Just wanted to say how helpful I have found this site! I have had yet another flare up and been hospitalised yet again. I'm at the point where my doc is recommending Infliximab (currently on aziathiprine, pentaza and budesonide when flare ups occur) but in all honesty I have been really quite scared about taking another step into another drug. I have been particularly daunted by the prospect of any side effects I may get, long or short term and so have been putting off giving it a go!

Having read all your posts here, hearing so many of you being so up beat about it and having positive results I think I'm going to jump in and give it ago! I feel like I need to do something as this thing is ruling my life at the moment so I need to wage some war on it!!

I have had yet another colonoscopy today ( oh the joy! ) and biopsies have been taken so it will be somewhat dependant on those results I guess but hopefully I can join this club too!!! :-D

It's so good to have somewhere that has a wealth of information and advice from people who experience the same disease and all that comes with it.

Thanks everyone, I can relax a little now...x
 
bethany84 said:
Hi everyone!

Just wanted to say how helpful I have found this site! I have had yet another flare up and been hospitalised yet again. I'm at the point where my doc is recommending Infliximab (currently on aziathiprine, pentaza and budesonide when flare ups occur) but in all honesty I have been really quite scared about taking another step into another drug. I have been particularly daunted by the prospect of any side effects I may get, long or short term and so have been putting off giving it a go!

Having read all your posts here, hearing so many of you being so up beat about it and having positive results I think I'm going to jump in and give it ago! I feel like I need to do something as this thing is ruling my life at the moment so I need to wage some war on it!!

I have had yet another colonoscopy today ( oh the joy! ) and biopsies have been taken so it will be somewhat dependant on those results I guess but hopefully I can join this club too!!! :-D

It's so good to have somewhere that has a wealth of information and advice from people who experience the same disease and all that comes with it.

Thanks everyone, I can relax a little now...x
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Welcome to the site! Yes, at the end of the day there is a trade off between the meds possible side effects to the illness rulling ones life. I pry that your biopsies come out clean and conclusive.
Best wishes
acg
 
First Injection of Remicade today!

Hello Everyone!

I have tried almost every drug in the book, including humira. None are tolerable for me. Although Remicade was showing promise long ago, my doctors hesitated to put me on it, either because the cost was too high or because I havn't taken 6MP long enough.:ywow:

Today, I got my first Remi infusion!!! Thanks to my doctor.
- Fistulas are already gone, like magic.
- Diareah emergencies seem to be gone.

I wonder how my life would have been if I had Remicade 10 years ago when I was first diagnosed...

Other than feeling a little tired and nervous, I hope I don't develop any bad side effects like respiratory problems in the long run ( I am a smoker )

Be well
 
Montrealer said:
Hello Everyone!

I have tried almost every drug in the book, including humira. None are tolerable for me. Although Remicade was showing promise long ago, my doctors hesitated to put me on it, either because the cost was too high or because I havn't taken 6MP long enough.:ywow:

Today, I got my first Remi infusion!!! Thanks to my doctor.
- Fistulas are already gone, like magic.
- Diareah emergencies seem to be gone.

I wonder how my life would have been if I had Remicade 10 years ago when I was first diagnosed...

Other than feeling a little tired and nervous, I hope I don't develop any bad side effects like respiratory problems in the long run ( I am a smoker )

Be well
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I am so glad you are responding well. I used to be a smoker too. Just so you know, smoking increases your chances of flaring by 60%. Its something to think about if the remicade helps you go into remission. I had the longest remission (4 years) after I quit smoking. Good luck!
 
Thanks acg - I have my appt in a few weeks with my doc so fingers crossed the biopsies wont show anything too sinister and I will get the go ahead to join the remi gang!

....do I get a special hat or something when I join? :) x
 
I am glad you are responding well. I was on remicade for 3 years out of which 2 were great and tappered off. dont worry about being little tired its totally normal... just take it easy the day of the treatment and you will be ok.
best wishes
acg
 
Glad you mentioned the tiredness it's wierd am ok day after but that pm I'm fit for nothing! Got another colonoscopy end of the month to 'check' it's working... Although surely the fact I've gone from 'going' 10-15 times a day to just 2 or 3 shud mean something???? Guess not to Drs! Dreading it but needs must! Infliximab has been a wonder drug for me so far! Just wish they cud get the venflon in first time! I come out looking like a junkie! Guess I must have defective veins!
Changing the thread slightly, what's everyone's favourite way of passing the 'inflixi' time?I read... Write letters (depending on which hand they decide to stick it in), daydream.... Any other suggestions wud be gratefully received!
 
Where I go, they have televisions..I watch Law and Order usually.....I usually bring a book, lunch (my appt is @12-1pm start time).....usend to bring needlepoint....haven't lately....maybe I'll bring some knitting next time! hmmmm
 
Hi everyone, I just had my 3rd Remicade treatment last week. I had my first while in the hospital and don't even remember it. My second and third made me extemely tired for a couple of days and I had some pains in my hip for about 4 days after. Other than that, not too bad. My appts are usually early in the morning and I took my laptop and played solitare. The worst part is getting the IV started. I have really bad veins. It's horrible. The last time they put in an IV at the hospital, it took 6 times and I'm not exagerating. The Remicade technician got connected in 2 tries. That was not too bad. Thanks for letting me share. The last couple of months have been a nightmare and I'm glad to be coming out on the other side! I'm glad you are all here.
 
So sorry you have a rough time with the I.V. I've read other posts here that say if you drink plenty of fluids the night before it helps with finding a vein. It worked for me, but then when I used the bathroom I had the added degree of difficulty of doing my business with an I.V. stand attached to a needle in my right hand lol.
 
acg101 said:
Its great that Remicade works for you! just take it easy the day of the infusion.
nbest wishes
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Take it easy? What is that? :kello: lol.....Fortunately I don't see any real side effects other than sometimes chills (but I get that way anyway).....I usually do normal activities after my infusion.....
 
I have a GI appointment tomorrow where I'm about 99% sure we will have the discussion of starting Remicade asap because nothing else is working. Not looking forward to this at all.
 
Mike - the remicade was one of the best things I've done.....look at the bright side - and hope you can take it! just think - no pills (or few) - sit around for a few hours every few weeks.....some 'you time'.....
 
I get that there are clearly more positives, but it is also just one of those things were it is really settling in that I have something wrong with me. I know it is really starting to hit my parents and it hurts them. I think they are also really worried about my other two younger brothers.

So all in all it is just the reality of the situation. It could always be worse though...
 
I hear ya....took me a Looooonnnnggggg time to accept there are certain things I jsut can't do, and that I really needed to take better care of myself. My Mom gets super-worried if I say I dont' feel well, or even get sick (with anything else besides C).....

Here is another bright note - I have a total of 5 brothers/sisters - NONE of them have Crohns'!
 
Responding very well to Remicade treatment, had my 3 infusion monday. Compared to Humira my well-being has accellerated and my gut feels calm and.......quite normal. Mornings usually equals about 2 bm's but then normally 0-1 bm for the remainder of the day. I almost do not dare hoping it will last - but ofcourse I do. Thumbs up for remi.
 
I'm in the same boat. I feel the best I've felt in my entire life. I'm not completely normal and still have my bad days of course, but I've put on necessary weight and have kept it on for months now. It took all 3 loading doses and about 2 months of Imuran to feel effects but I have not been to the hospital for a while now and I hope I continue to improve. I like this stuff.
 
June 22nd at 7:30am....I will probably sleep the whole time seeing as though I won't sleep the night before.
 
I am getting my 3rd infusion in a couple of weeks. So far no change in my condition. I have had constant nausea, unsure if its the 6mp or just my colitis.

I hope the 3rd infusion does some magic, not much else left to try.
 
I had my fourth infusion last Thursday. I've had some nausea and dry heaving, with fatigue, not sure what it's from, though.
 
@ Xeek - It took me 5 infusions to feel better and than I felt GREAT for almost two years and switched to Cimzia. regarding your constant nausea, it helps a lot to take a regular antihisamine for few days... But it could be the side effects of the 6mp.

@ Mountaingem - throuout the infusions I've had some nausea and dry heaving, with fatigue especially the few days after the infusion. I figured that if I took it easy for few days all went much better.
 
I had my 3rd dose 2 weeks ago. I seem to do fine with the infusion, except extremely fatigued for about 48 hours and my hips hurt for 3-4 days. I don't understand it. My digesting seems to be better, but I'm still afraid to be too aggresive with my diet. I am only eating extremely soft stuff and liquids. I guess I should get a little more adventerous and eat something else to see if it hurts or not. How else will I know if the Remicade is working or not?
 
@ Beverly - sometimes It takes few doses for the Remicade to kick in. You will know because you wake up one day and its almost like a miracle and you are not having symtoms. I also was very tired after taking the Remicade. I was on a six weeks cycle: Week one tired and not feeling great, weeks 2-5 felt great and introduced new foods, and week six I was ready for another dose and the symtoms were coming back. towards the end they upped my dosage to the max but it stopped working and I switched to Cimzia.
Are you still on Prednisone?
 
@ Dan - Yes, I am on Prednisone. I just left my GP who told me EVERY problem I'm having now is a side effect of the prednisone. I'm on 30 mg per day and I am to start dropping it 2.5 mg per week. My GI told me to drop it 2.5 every 2 weeks, but with all the problems I'm having I really need to do something. I'm miserable. But, as we all know, you can't just stop taking it. Other than that I seem to be doing ok except I'm still very paranoid about eating. My doctor said it was ok that I'm taking it slow. I've had the same GP for over 10 years and he's been very worried about me lately. 3 hospital admissions with 24 total inpatient days in 2 months. I'm glad I have a new GI or I'd probably still be in the hospital. Anyway, I think things will get better once I'm off the prednisone. Thanks for your input. I appreciate it.
 
IM SUCH AN IDIOT! I have just realised that Remicade is Infliximab!!!! Can i please join this club?

Have had 3 treatments and not seeing any results yet!

fingers crossed
 
@ i LOVE LAMP - It can take as many as 6 treatments to see results so don’t get discouraged..
@MisB - I am glad I can be of assistance.. Prednisone for me was the worst med EVER! but I had to take it a tapper it off. the side effects drove me (and my wife..) nuts. Get off it as soon as you can but follow your dr instructions.
 
Has anyone ever been called in for a double dose of Remicade. Having a bit of a flare up and the docs want to bore me to death with a big infusion.
Has anyone had similar and did it work?
 
Had my first infusion today. It was not bad, because of my weight I needed 6 viles and felt like a fatty for once. There were 4 others in the room, all of which were guys who all had UC.

I'm just really tired and feel like I have been hit by a large semi right now. Is that typically of the first few times?

I think the nurse might have hit something else in my hand besides a vein because it has really been pounding.

Is it also normal to be given Tylenol before hand? She gave us all Tylenol but I thought I was told by my GI to avoid it.
 
I was on Remicade from Dec 2005- May 2007. At the time I was told to take a Claritin and Tylenol before I arrived. I never had a problem.

I started back on it Dec 2008 with a different doctor and he did not prescribe any pre-infusion medications. I had an anaphylactic reaction during the second infusion which was pretty scary. Luckily I was in the hospital when it happened and the nurse was right there to give me something to reverse it.

Currently I get IV prednisone and benadryl beforehand and receive the infusions at home. I do feel tired afterwards (even when I was not getting benadryl) and usually have to take a nap.

I've also noticed that a few days after the infusion I get a strange, dull, achy kind of pain in the pit of my stomach. has anyone ever experienced this?
 
@AmyWooden - getting an anaphylactic reaction during the infusion is scary. that means that typically they will not try remicade again. I was getting very tired the day of, and for the next week I was getting flu like symptoms which went away after 5 days.
I hope remicade works for you! it did for me for a while and I switched to Cimzia.
 
Mike said:
Had my first infusion today. It was not bad, because of my weight I needed 6 viles and felt like a fatty for once. There were 4 others in the room, all of which were guys who all had UC.

I'm just really tired and feel like I have been hit by a large semi right now. Is that typically of the first few times?

I think the nurse might have hit something else in my hand besides a vein because it has really been pounding.

Is it also normal to be given Tylenol before hand? She gave us all Tylenol but I thought I was told by my GI to avoid it.
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@ Mike - tylanol is typically fine for UC or CD - its the advil we need to avoid. I was getting 8 viles and at the end 10 and my weight at the time was 180lbs. it takes a while for your body to get used to it so hang in there
 
acg101 said:
@AmyWooden - getting an anaphylactic reaction during the infusion is scary. that means that typically they will not try remicade again. I was getting very tired the day of, and for the next week I was getting flu like symptoms which went away after 5 days.
I hope remicade works for you! it did for me for a while and I switched to Cimzia.
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@acg101 How is the Cimzia working for you?
 
Had my infusion on Monday - things went well this time - no long wait, the Vitamin B shot was ready for me...only thing is they didn't have orders for blood work, so I had to have that done at the end - with a note to let the lab know I had already gooten the B shot.....

I'm on a low dose of Remicade - 4 vials - may have to discuss possible changes with my Dr as I have been getting some cramping on and off - not every day, but more like when things move through my bowels at a certain spot it aches/hurts.....the good thing is I can increase the dose if necessary.
 
AmyWooden said:
@acg101 How is the Cimzia working for you?
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@ AmtWooden: the Cimzia did a wonderful job for me. it took few treatments but it healed me so fast, matter of fact too fast, that it caused other issues and I have decided to have the proctocolectomy surgery in two weeks. I am almost 100% pain free, still running to the bathroom 5-10 times a day. my ostomy will be permanent.
 
pasobuff said:
Had my infusion on Monday - things went well this time - no long wait, the Vitamin B shot was ready for me...only thing is they didn't have orders for blood work, so I had to have that done at the end - with a note to let the lab know I had already gooten the B shot.....

I'm on a low dose of Remicade - 4 vials - may have to discuss possible changes with my Dr as I have been getting some cramping on and off - not every day, but more like when things move through my bowels at a certain spot it aches/hurts.....the good thing is I can increase the dose if necessary.
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@pasobuff - I am glad remicade is working for you. I experienced certain spot on the lower left (sigmoid) aches no matter what I did but once BM passed through I was fine
 
Went in for my double dose last Friday and it has worked almost immediately. My symptoms have more or less subsided and i have put 5 pound on just under a week! I love this stuff...wish you could get it with the shopping!
 
Ok...it is three days later and I still feel like I was hit by a large semi and I'm still exhausted. Anyone else experience this?
 
Mike said:
Ok...it is three days later and I still feel like I was hit by a large semi and I'm still exhausted. Anyone else experience this?
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@Mike, let your doctoe asap that you have this kind of reaction otherwise it will go away. it gave me flu like symptoms
 
hi i started on infliximab in 2000 and it has just been suspended due to me being very ill with side effects from this read my story in the my story thread i never had any problems with this untill 6months ago
 
Sitting in the chair having my 5th Infusion. Just had a vagal reaction to the Infusion which scared the he'll out of me. The flow of the Remicade felt really cold and my mind just focused in on the sensation. Next thing I knew I turned completely white, my BP dropped, got nauseaus and clammy and nearly passed out. It's been an hour since and we're going to try again. SLOW drip rate and constant monitoring. Wish me luck !
 
@ Gurgle - Good Luck. Sometimes when they try it slower its ok but be on top of it. did they give you Benadryl?
 
Thanks Dan, everything is fine now. Feeling like a normal Infusion now. The mind is a complex thing. Glad it's going well since I am in a flare and I need my fix.
 
Can I join the club?:p I've been on remicade since 2006. It has given me my life back. Only meds we have found that has put me in remission and kept me there so far.(and hopefully for a looooooooooooong time!) I am on a double dose.(8 vials, I feel so fat :eek:) because the normal dosage wasnt enough to get me in remission. Been on a double dose probably about 3 years now, and I go every 8 weeks!

The day of and the day after are the hardest for me usually. The day of I am just totally wiped out. I usually sleep the rest of the day. The day after I have to work so that helps keep me awake and keep my mind of it. Sometimes I'll get a little nausiated and lightheaded, but not often. I find this happens more on days I am constantly bending up and down(working at a vet clinic, some days im constantly up and down) Does anyone else also the day of your remicade treatment, does your legs start hurting, like a soreness feel? Kind of feels like you have been working out. Only way I can describe it. I get this sometimes, but its gone the next day.

Other than that, I basically have no side effects, just those few minor ones and they are very tolerable! Love remicade!
 
Hey everyone ... just saying hello! Haven't been here for a few months. Sill on the Remi and had my first 8 wk dose 6/4 ... so things are so far so good.

On a side note, does anyone on here get tonsil stones?
 
Hey Jordan - good to hear things are going well.....actually, yes, I think I get them! I never knew what these nasty, smelly white things were that I woiuld occasionally cough up...until a couple weeks ago I was doing some internet surfing and found info on them - exactly what I had been having!.....

Do you get them too?
 
Yea I get them ... I used to get them like 5 years ago but they went away. Now I seem to have them more since I started the Remi. I can't figure out if it's form that or the constant allergy sinus drip I have lol.
 
Hi !
Just started remicade yesterday. Everything went great.
There is one major problem. I need to have both of my hips replaced! The consultation
with the orthopedic surgeon was alarming as well as depressing. He told me that the risk of infections and the chance of Crohn's seeding bugs into my circulation will secondarily
infect my prosthesis. Is there anyone who has had a hip replacement while on remicade?
If you did,what were the results? I have to admit I'm scared that that this problem could become worse than having resections!
 
Hey 6H, welcome to the forum. Perhaps you could tell us your journey getting here on your own thread so everyone can meet you! Go to YOUR STORY and create your story. Nice to meet you welcome aboard. Sorry I can't help with your question but everyone will see you on your own thread!

Welcome aboard!
 
Hey everyone!!

i'm new to the website and forum, a friend told me about it and been fab so far knowing that you are not alone.

i'm hoping to go on remicade. at thr hopital in the morning to talk about it

Danielle x
 
Waiting now to go on remi what tests will i have before they let me on it chest x ray? i'm on aztrioprine sp? do you reckon the'll keep me on that?
Hopefully sort these fistulas and abcesses out !!!! :)
 
Mummy Bear said:
Waiting now to go on remi what tests will i have before they let me on it chest x ray? i'm on aztrioprine sp? do you reckon the'll keep me on that?
Hopefully sort these fistulas and abcesses out !!!! :)
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Welcome to the forum - They will probably keep you on the 6MP to help with the Remi. Remi helps alot in fixing fistulas!!!
Good luck
 
acg101 said:
Welcome to the forum - They will probably keep you on the 6MP to help with the Remi. Remi helps alot in fixing fistulas!!!
Good luck
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Thanks, can anyone tell me what i can expect it to do for my abcceses and fistulas ? and how long it will take? i know it's prob different for everyone but am counting on this!!!! i.ve been near enough immobile for a year now.
It was our 25th Anniversary this year and we want a nice holiday to celebrate....... (jamaica we hope)

Thanks.......:ysmile:
 
Mummy Bear said:
Thanks, can anyone tell me what i can expect it to do for my abcceses and fistulas ? and how long it will take? i know it's prob different for everyone but am counting on this!!!! i.ve been near enough immobile for a year now.
It was our 25th Anniversary this year and we want a nice holiday to celebrate....... (jamaica we hope)

Thanks.......:ysmile:
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@ As you suggested, everyone is different when it comes to treating and responding to meds.
In any event, Once I stated the Remicade (after 8 years on Flagyl/Cipro/Imuran) my fistulas started to heal after the 4th or 5th application and were healed after 7 or 8 applications.
I hope you enjoy and have the best, pain free 25th anniversary
 
I'm getting my Remi infusion right this second! I'm almost done. It's lasting the whole 8 weeks, and I am feeling great.
Yay remicade!
 
My Butt Hurts said:
I'm getting my Remi infusion right this second! I'm almost done. It's lasting the whole 8 weeks, and I am feeling great.
Yay remicade!
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Hah, I always forget to bring my computer with me when im getting it and end up just watching tv.

Anyways I have done 2 infustions and go for my 3rd in a week
 
Remicade and Hip Replacement

Hi!
Well ,I made the decision to have the hip replacement. There seems to be no agreement from numerous GI docs about stopping remicade. My doctors have decided to keep me on the imuran and do the surgery four weeks after my last infusion of remicade(and load me up on antibiotics) and then four weeks after the surgery I get another infusion....so I really never stop the remicade. There needs to be more research into affects of remicade on surgical patients.This decision by the doctors carries no guarantee that infections might happen .
Crohns seems to put all of us between a rock and a hard place! So now its the right hip and then on to the left!
 
@ 6hwq- how is your health otherwise? There is ton of research done regarding the TNF drugs including its effects on ones immune system and Patients treated with REMICADE are at increased risk for developing infections, thus the "black label warnings".

You should be fine if they load you with the right antibiotic and discountinue remicade before surgery.
Good Luck
 
acg101-
The remicade is working! I'm coping....seems I have some spine problems as well...I dislike the fact that I can do very little walking,something the surgery should help until the back problem rears it's ugly head! One day at a time is my motto. A death of a sister and a close friend haven't helped but life goes on I treasure every damn day no matter how limiting! Thanks for the support!I 'm happy to see that your surgery went well and wish you the best!
 
hi been put forward to have remicade, waiting to see if i can get funding go back to the hospital on the 12th so fingers crossed!!!!!! they have put me back on steroids to help out till i find out. ive had all the test done its just a waiting game now!!!! boooo!!!!
 
Mummy Bear said:
Waiting now to go on remi what tests will i have before they let me on it chest x ray? i'm on aztrioprine sp? do you reckon the'll keep me on that?
Hopefully sort these fistulas and abcesses out !!!! :)
Click to expand...

hi i am waiting to see if i can get funding to go on it. i had bloods done and chest x ray last time i was at the hospital, go back on the 12th. have you gone on it yet?
 
Add me onto here as yet another who the Remicade is doing wonders for! I was in very bad shape exactly a week ago (40mg's of Prednisone was doing nothing) and I feared the worst, but I went in for an infusion last Wednesday and I'm literally feeling 100x better right now! In fact, it seemed to kick in and start improving my symptoms almost immediately. I go back in again after only two weeks, followed by four weeks, and then eventually every eight weeks as long as it keeps working.

FYI, I had three separate Remicade infusions over 9 years ago when I was first diagnosed with Crohn's and in a bad flare up, and the Remicade was what also put me into complete remission at that time as well.

I know it doesn't work for everyone, but it sure seems like a real blessing. I've heard many of the same great things about Humira, which my younger sister is on and also responding very well to. :)

Best of luck to everyone,

Mike
 
danielleprice said:
hi i am waiting to see if i can get funding to go on it. i had bloods done and chest x ray last time i was at the hospital, go back on the 12th. have you gone on it yet?
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No not started yet STILL WAITING !!! got a appt on the 18 Aug so fingers crossed will here something then. At least i don't need to worry bout funding in the UK. Good luck x
 

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