Share Facebook
Crohn's Disease Forum » Treatment » Remicade/Infliximab » Long time Remicade User


05-13-2014, 10:40 AM   #1
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
Long time Remicade User

I've been on Remicade for 3 years now and I've been in complete remission for around 2 years 6 months. I take 500mg which is a dose of around 7.5mg per kg of body weight.

When I was first diagnosed in 2009 all I could think about every day was finding something that would work and allow me to return to a semi-normal life. Now that I've been in remission for an extended period of time days go by where I don't even think about Crohn's. I'm fortunate enough to live a life largely unaffected by my diagnosis.

I wanted to say that to generate hope for those of you that haven't yet found your path to remission and to make myself available for questions for those of you new to Remicade or curious about it. So please, if you have anything you'd like to ask please go ahead and I'll try to respond as quickly as I can.
__________________
Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
05-13-2014, 10:51 AM   #2
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hi. Thanks for the post. I'm starting remicade in the next couple of month. Glad to hear you've had success.

How did the initial dosing go? Any issues?
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
05-15-2014, 02:08 PM   #3
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
Hi. Thanks for the post. I'm starting remicade in the next couple of month. Glad to hear you've had success.

How did the initial dosing go? Any issues?
No, I didn't experience any issues with my initial loading doses.

Regarding the drug working... I started with a 5mg/kg ratio and while I didn't encounter any issues the drug just didn't work for me until they increased to 7.5mg/kg or approximately 500mg. They round off and do an even 500mg even though it's not precisely 7.5mg/kg.

When I was on 5mg and I knew it just wasn't working I brought it up to the nurse at the start of an appointment for an infusion. She expressed some concern over increasing it more since once you've done so you don't really want to adjust it down if you don't have to. I basically told her it wasn't working and something different had to be done. At that point she brought it up to the doc and we decided on 7.5mg. A few months later and I was well on my way to remission.

So long story short if there is no noticeable improvement within a few months let them know. You'll be the first person to know if there's an improvement, don't let them tell you just need to wait etc.

Regarding side effects... I get benadryl and tylenol before every infusion. I haven't had any sort of allergic reaction yet but I still keep up the benadryl/tylenol routine to this day. There were some other things that sort of freaked me out, swollen lymph nodes, rash on my face that 'looked' like lupus (it wasn't lupus), cellulitus on my elbow etc. I would say none of them were because of Remicade, I just freaked out and thought they were somehow related.
05-15-2014, 03:33 PM   #4
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Thanks for the encouraging thread. My son started on Remicade in January. He will be having his 5th infusion on the 28th. His GI shortened the time to every 6 weeks as he had symptoms the last week of his first 8 week stretch. It has been a miracle drug for him he is finally growing, has gained weight and is enjoying things like most teenage boys. He is playing baseball, looking forward to driver's training this summer and being able to enjoy high school instead of missing a bunch of school.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
05-15-2014, 03:52 PM   #5
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
Thanks for the encouraging thread. My son started on Remicade in January. He will be having his 5th infusion on the 28th. His GI shortened the time to every 6 weeks as he had symptoms the last week of his first 8 week stretch. It has been a miracle drug for him he is finally growing, has gained weight and is enjoying things like most teenage boys. He is playing baseball, looking forward to driver's training this summer and being able to enjoy high school instead of missing a bunch of school.
That's fantastic! Thanks for sharing, I really hope it continues to work for him long into the future. No one deserves the kind of disabling pain UC and Crohn's come with.
05-15-2014, 03:57 PM   #6
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
Hi. Thanks for the post. I'm starting remicade in the next couple of month. Glad to hear you've had success.

How did the initial dosing go? Any issues?
Some more thoughts for you DJW. There are some 'side effects' people may neglect to mention. Firstly, the 2-4 hour IV of saline solution and Remicade will likely make you have to urinate since they're pumping so much liquid into you. It's not like you can't wait until you get home but I remember one of my first infusions I must have been well hydrated to begin with as an hour or two in I had to drag the machine with me to the bathroom. Secondly the benadryl makes me super tired so I usually take the day off work and I aim for a Monday or Friday.
05-15-2014, 06:05 PM   #7
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Thanks for the tip. I guess I shouldn't plan on driving myself. Currently I'm unable to work but this reenforces my desire to start some from home that can work better around this illness.
12-21-2014, 02:38 AM   #8
jonique
Senior Member
 
jonique's Avatar
 
Join Date: Oct 2012
Location: Vancouver, British Columbia

My Support Groups:
Some more thoughts for you DJW. There are some 'side effects' people may neglect to mention. Firstly, the 2-4 hour IV of saline solution and Remicade will likely make you have to urinate since they're pumping so much liquid into you. It's not like you can't wait until you get home but I remember one of my first infusions I must have been well hydrated to begin with as an hour or two in I had to drag the machine with me to the bathroom. Secondly the benadryl makes me super tired so I usually take the day off work and I aim for a Monday or Friday.
Hi SdN,
I have been on Humira for two years but it stopped working for me. I had my first Remicade infusion this past Tuesday. I had Tylenol only as pre-med. The infusion was fine (actually very relaxing!). in the evening, I started to get a stuffy nose and have had it ever since. I'm wondering if this is a side-effect or just a coincidence? I think I will try a non-drowsy antihistamine the day before my next loading dose and see if that helps. I read on this site that someone does that and then takes it every day for a week after the infusion. Have you had any issues with a stuffy nose?

I haven't noticed any improvement since the infusion but i know it can take more than one for some people to notice a difference.

thanks for starting this thread.
__________________
Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016

Last edited by jonique; 12-21-2014 at 02:53 AM.
12-22-2014, 09:07 AM   #9
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
Hi Jonique, congrats on starting Remicade I hope it gives you some long term relief! I've never had a stuffy nose that could be attributed to Remicade or really any other allergic reaction for that matter.

There was a period of time, maybe a year, where if I didn't take a daily Allegra(Fexofenadine) I'd have hives all over. I was convinced it had something to do with Remicade but turns out it was unrelated and eventually resolved itself. I now no longer take the daily Allegra, unless it's allergy season, and have no hives whatsoever. So that said I so far haven't had any allergic reactions.

My Remicade pre-meds include a Tylenol and Benadryl. The Benadryl makes me tired but it's a good excuse to catch up on sleep during and after the infusion.
12-22-2014, 09:29 AM   #10
plebsta607
 
Join Date: Dec 2014
hey...i saw my consultant today and they are looking into starting me on infliximab....have to have all the TB tests and chest xray etc first....
i am in England and im not sure if this is an english site or american so i dont know if it all works the same.
the thought of trying this new treatment scares me...is there anything you can suggest?
does it hurt? will it make me sick?
i have spoke to my doctors about it but would like to hear it from someone that has been through this themselves lol
thanks in advance
12-22-2014, 10:12 AM   #11
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
I started in September and have actually found it very relaxing. As SdN said, the benadryl also means nap time for me. I bring my iPod and relax.
12-22-2014, 11:42 AM   #12
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
pleb, the drug itself doesn't hurt and you don't even feel it going in, unless it's cold then you feel the temperature difference. One thing I think may be a side effect is the area on my inside bicep can sometimes hurt. I think it's because when I'm getting infused the veins take a turn in that area and the drug sort of builds up causing irritation. At first I was paranoid it was some kind of thrombosis but I asked and the doc seriously doubted that was the case, he said I would have a whole lot more problems if it was thrombosis. Now that I've started excercising regularly again the pain goes away and I try to alternate the infusion site between both arms. Probably the worst pain is when they remove the needle and rip the tape off my hairy arms.

Regarding making you sick, I've never gotten sick from it. One of the biggest concerns is having an allergic reaction, hence the Benadryl pre-med. Even if you're someone who's handled the drug fine in the past you could still theoretically develop a reaction. To monitor that and reduce the likelihood they will slowly infuse the drug over 2 or 3 hours rather than dumping it in you all at once. I've been taking the drug since March 2011 and have not had any indications of an allergic reaction so far.
12-22-2014, 02:48 PM   #13
plebsta607
 
Join Date: Dec 2014
oh you dont understand how much more at ease im feeling now lol.
not looking forward to them taking the tape off though lol...thats one thing i really hate about blood tests lol.
i expected to be stuck in hopsital all day and then feel crap for the next couple of days after...but by the sounds of things everyone is saying its relaxing lol.
i have to have all the screening tests first to check for TB etc. but hopefully they will get all that sorted quickly and i can get started on it...ill try anything to make me feel better. especially now i know abit more of what to expect lol
thank you very much
12-22-2014, 03:03 PM   #14
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
No problem at all! You've probably been told already but when you're just starting there's a loading phase where you get infused, then again after 2 weeks, then once more after 6 weeks, and from thereon out a maintenance dose every 8 weeks or whatever they determine in your case. They may increase the doseage or increase frequency depending on how you respond. Personally I'm at 7.5mg/kg, they had to increase from 5mg/kg since I wasn't initially responding. Good luck!
12-22-2014, 03:29 PM   #15
plebsta607
 
Join Date: Dec 2014
yeh they said it would be more often for the first 3 lots...then should go to ever 2 months....they didnt really explain anything about dosages but even if they did i wouldnt understand any of it anyway lol.
its like when i was on aza they tried explaining i can only have certain amount to do with my weight and height or something but it goes straight over my head lol
12-27-2014, 10:10 PM   #16
DavidXU
 
DavidXU's Avatar
 
Join Date: Mar 2013
Location: Beijing, China

My Support Groups:
Hi SdN, I am more than happy to hear you heal well for long term and lead a normal life.
I just took my first Remicade infusion 5 days ago. I have been feeling dizzy and sleepy since then.
Did you have any reaction(s) for your first infusion?
12-28-2014, 01:25 AM   #17
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
No David I have never had that reaction to Remicade. Did the doctors ever tell you that you are anemic. If you have experienced a lot of bleeding you may be anemic which could be causing low blood pressure (dizzy) and tiredness. Your body may also be having trouble absorbing enough iron which can also cause anemia.
12-28-2014, 03:27 AM   #18
maggiesfour
 
Join Date: Apr 2014
Location: Valencia, California

My Support Groups:
Hi SdN, I am more than happy to hear you heal well for long term and lead a normal life.
I just took my first Remicade infusion 5 days ago. I have been feeling dizzy and sleepy since then.
Did you have any reaction(s) for your first infusion?
Hello - what a great thread. Many of us do have different reactions, and we do need to make sure that we do tell our doctors and or nurses.
DavidXU - I was on remicade for 22 mos. I had pre-med IV Benedryl - I was basically knocked out. And from day 1 - I was exhausted right after infusion, and I had the fatigue until day 7. After six months, the fatigue lasted 14 days. Also, after 6 mos they gave me a Claritin Pill before the infusion, as they wanted to try not using the IV benedryl. I immediately, started to get hives, and feel incredibly ill all over. They stopped the infusion, and with my permission, gave me the IV benedryl, and then I received the infusion. I was fine!

I loved being on the remicade, until I couldn't take it anymore. Unfortunately, as time wore on, I had increasing bone pains, and a host of other side effects. I gained 40 pound! lol...I ended up having 100% antibodies, and not being able to take it anymore. I am still in remission, and the truth is the doctors have no idea of how long I have been in remission on my own. I made a lot of friends, getting my infusions.

Good luck!!
01-05-2015, 11:47 AM   #19
jonique
Senior Member
 
jonique's Avatar
 
Join Date: Oct 2012
Location: Vancouver, British Columbia

My Support Groups:
Hi SdN

I'm at day 7 after my 2nd infusion. I'm still dealing with a stuffy nose and also have an itchy scalp. I have been taking Reactine every day and have to take Benedryl at night time or I can't sleep due to the nasal congestion affecting my breathing. I've been off work for two weeks for the holidays so last night i didn't take the benedryl because I wanted to wake up early this morning. Big mistake. I basically didn't sleep all night and now I'm exhausted, plus stuffed up and itchy. Today I switched to Aerius to see if it works better.

I'm just wondering though, as I don't have any allergic reaction at the time of the infusion whether benedryl premed will help the itching and stuffiness that is occurring after I have the infusion. I'm seeing my GP this week so will ask her about it.

My next infusion is at the end of the month so I have longer to assess whether these symptoms will go away before my next infusion. Hopefully once I am on the every 6-8 week plan that if i get any side effects that they will be just a few days after and then I'm good for the rest of the time until my next infusion.
01-10-2015, 09:05 PM   #20
mrsyed
 
Join Date: Jan 2015
Location: Bay Area, California
I have been on Remicade for my condition for more than 5 years. I was on the 3hr infusion rate at 400mg, when we attempted to switch to 1 hour, I had a bad reaction. Later in the years, the nurse sped up the rates and I slowly had less of a reaction. So your side effects may diminish over the treatment, hopefully.
01-15-2015, 06:34 PM   #21
Lombardi14
 
Join Date: Jan 2015
Location: New Windsor, New York
Hi. New to this forum. 3 yrs on remicade. In remission from Crohn's but still experience episodes of IBD. Diagnosed at 30, but symptomatic since 17, will be 47 in April. First surgery at 17, and many, many there after. Suffered 2 bowel perfs, a colostomy (temporary &#128516, bacterial infections and several rejections-last one April 2012. Total to date-20.

Remicade every 6 weeks
Pentasa
Omeprozole
Oxycodone (only when very bad, been off over a year)
Vitamins
Folic acid

You know, all the good stuff we Crohn's sufferers need.
Alas, I'm grateful!! It HAS been worse for me and CAN always be worse. I have changed how I do some things, but life is always changing.

My concern is the long term effect of remicade. I've researched it extensively but looking to see if there is more to learn.
Obviously, I'm concerned about the potential for lymphoma that's a big one, immunity issues, liver etc.
03-03-2015, 07:50 PM   #22
indyjps
 
Join Date: Feb 2015
Considering starting remicade, crohns with fistula. Diagnosed about 9 months ago. I'm not opposed to drastic diet changes to limit the crohns. Im looking for advice if the fistula can be healed without remicade.
03-04-2015, 09:19 AM   #23
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
Lombardi, I've probably read all the same things you have regarding Remicade risks. I suppose my take on it is 1) Is there a better option out there and 2) if there is a better option is it worth the risk of going off of Remicade and having an increased chance of allergic reaction if I tried to restart it. I also frequently remind myself of the risks associated with uncontrolled Crohn's. The risks for cancer, surgery, vitamin deficiency, depression, anxiety, osteopenia, anemia etc. etc are all higher. It quite literally destroyed my life so when you put that on the scales it weighs very heavily. In my search I came across many websites and testimonials about how someone solved their IBD with vitamins, diet, probiotics, blah blah blah. I gave the Specific Carbohydrate Diet a try and it just made me lose another 10 lbs (I was already very underweight). I tried probiotics and there was no change whatsoever. Tried dairy free and nothing. I'm not discounting that there are people who truly believe but I haven't seen enough Science behind any alternative methods to make me want to risk it.

Indy, I haven't experience a fistula so I can't say whether Remicade contributes to healing one or not. All I can offer is to say that I had a colonscopy in December 2014 and they saw no signs of Crohn's or any other inflamation. I'm working on my 3rd year symptom free. It's the only method that I've tried that has taken me to remission and kept me syptom free (so far).
03-17-2015, 10:22 AM   #24
MISSHERI
 
Join Date: Mar 2015
Location: Massachusetts
If you have the opportunity to try Remicade I would. I have lived with Crohns for 19 years now and I have tried it all. Seriously!! I have a very very aggressive type of Crohns. I also have had 4 surgeries in the last 11 years. I was on Remicade once many years ago. It was GREAT!! I had remission for 6 years and could live life again. Until my Crohns came back with a vengeance and i was told my grow antibodies/immune to it. MY PARTY WAS OVER. I was going to ask my doctor next week if he thinks it would work again so many years (8?) later.Its worth a shot to ask since have no more options. I have become steroid dependent and its doing a lot of damage to me. Has anyone Heard of or tried this new drug ENTYVIO?

Best of luck to you all!!
03-17-2015, 11:22 AM   #25
lookame
Senior Member
 
lookame's Avatar
 
Join Date: Jun 2011
Location: Columbus, Ohio

My Support Groups:
I was on Remicade for 2 yrs...it was fantastic. Then...i became allergic. My infusions started getting longer to compensate then i started getting hives and the final straw was hives in my throat.

Up until then though i was on the double dose every 7 weeks and i felt pretty great, i did have drug induced lupus because of it though...
__________________
Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

Current meds-
Prednisone, humira, 6mp, and lialda
awaiting surgical consult

Mom of Little Z
eosinophilic esophagitis 5/2015
03-17-2015, 12:02 PM   #26
Robrich
Senior Member
 
Robrich's Avatar
 
Join Date: Oct 2012
Location: SoCal

My Support Groups:
Missher sometimes you can go back to Remicade after years and it will work, definitely worth a try.
I am on vedo now nothing like remicade for quick results.
Very slow. But helping some.
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
05-02-2015, 08:47 PM   #27
staywell
 
Join Date: May 2015
Location: river edge, New Jersey
Hello,

New to site. Second infusion of remicade after a hospitalization. Feel 100% better. Wiped out after first infusion but that was probably in response to horrible flare. Two weeks later much better and now feeling I have life back. Seems like miracle to me. Don't get pre meds. Should I be concerned about weight gain. Happy not to be wasting away but would be freaked out if I gained 25lbs. Just read somewhere it is a side effect. Never gain weight on Prednisone just get crazy and don't sleep. Are you really on Remi for life? No prob catching colds....both sons and husband had awful colds and I am fine.

25 mg Prednisone, tapering from 40 mg (5 mg per week)
Apriso
sleeping pill
Modified Paleo Diet (I eat organic white rice)
probiotic
all sorts of vitamens and immune gummy bears
diagnosed 1996. Hospitalized 2000. Managed no symptoms no meds 10 years. Came back 2011. Told steroid resistant. Uceris put me in steady decline and back in hospital in April

Last edited by staywell; 05-02-2015 at 09:11 PM.
05-08-2015, 06:51 AM   #28
Lawrence89
 
Join Date: Feb 2014
Location: London, United Kingdom
Can anyone who is/was successfully having Remicade/Infliximab tell me how their food tolerance changed before and after treatment? Since my diagnosis 10 years ago I've always been sensitive to dairy and spicy stuff (typical crohns type things) but I am starting Infliximab soon and providing it works what can I expect in terms of gaining back previously troublesome foods. After 10 years I know in the grand scheme of things it's not the be all or end all, but I just want to eat what I want
05-08-2015, 07:23 AM   #29
SdN
Senior Member
 
SdN's Avatar
 
Join Date: Sep 2010
staywell: I've been on Remicade for years and not experienced anything other than normal weight gain so I'd expect you would be ok. If you never experienced weight gain on prednisone consider yourself lucky!

Lawrence89: Being in remission and on Remicade I'm able to eat anything I was able to eat pre-Crohn's. That said I stay away from alcohol because I'm concerned that for me personally it may have been a contributing factor in developing Crohn's. I have no science behind that claim and if it's true I'm not saying everyone else is the same.
05-08-2015, 11:29 AM   #30
Lawrence89
 
Join Date: Feb 2014
Location: London, United Kingdom
thank you SdN. That would be an absolute dream come true if I could eat how I ate pre-Crohn's, not that I particularly remember what that was like haha but I don't remember having any sensitivities to anything. A lot of us have our own theories as to how our Crohn's began so I'm not about to tell you you're wrong at all, avoiding alcohol certainly can't hurt can it and I definitely won't be overdoing it in that respect even if I fully recover.
Reply

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Long time Remicade User
Thread Tools


All times are GMT -5. The time now is 08:52 PM.
Copyright 2006-2017 Crohnsforum.com