• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Remicade Club Support Group

Hi all,

My husband had his 3rd Remicade loading dose 10 days back. For the past 1 week, he has been noticing mucus-like discharge which is slightly white in colour. This gives a sticky feeling in the anal area. Today when he felt sticky, he wiped it clean and found slight traces of blood mixed with the mucus-like thing. We are not sure if it is because of gas or it is coming out of the 2 fistulas he has setons in for. The fistulas are healing now though and are almost gone according to me. Any body else face this kind of situation?

Thanks
Aarthi
 
Update on the above - We updated his GI on this and he told us not to make any changes to his current medications. He told us to keep him informed in 2 weeks about the symptoms. I'm quite worried :( Because he was as good as new after starting Remicade.
 
dave13: I've had bad veins since I was a kid, but lately it's been crazy. Three or four infusions ago it took them 9 sticks to get a line in, and the last 3 were with an ultrasound. Now they schedule a PICC nurse to come with an ultrasound and the extra long needles every time anyways. That, in combination with the fact that I have to do weekly MTX injections and monthly B12 injections, plus the regular bloodwork, all of which could be done through a PICC, has led my docs to believe that a PICC might be the best solution, at least for the moment.

But yes, the nurses always try their best, and I know from experience that it isn't their fault in this particular case. It's me, not them. :p I try to keep a smile on my face and be nice, because they're really the most important people in a hospital stay of any duration. Doctors might show up for a few minutes now and again, prescribe medication, etc., but the nurses actually take care of you, and I really do appreciate that!

But anyways, I'm getting the PICC placed in a few weeks I think, before my next infusion. I'm a little nervous as I've never had one done before, but I really am looking forward to bypassing all of the effort that has been required to get an IV lately.
I'm not sure if I'm doing this right. It's the first time I've ever done this.I've had two PICCs. The procedure of inserting did not hurt. You don't feel it going all the way up to your vena cava. The only thing I would say is that nurses did not ike using the PICC for blood draws. I had another procedure with the PICC in place for the needle for anesthesia. It is mainly used to self administer antibiotics and hopefully for Remicade. The other thing I want to stress is flushing it regularly. between infusions. You have to keep using the saline or the end inside with close up and possibly for a book clot. When my longer term PICC was used and taken out, there was a clot about an inch long. I feel lucky to be alive!!
 
Three weeks after my third treatment and the slow road to normality continues. Talked to a former student who is on Remicade for over a year and was encouraged. I'm on the full dosage now and it seems to be working fine. I'm not back to where I was before Crohns but I can see that as a goal...not going through pads or diapers at a fast rate any more and that's encouraging as well. Next treatment in October and looking forward to it. Back teaching now and that's encouraging too. Hang in there everyone. I think this stuff is working.
 
Mid-point to first maintenance dose @ 8 weeks and feeling okay but experiencing an increase in pain, substantial reappearance of blood, and increase in exhaustion which is all disheartening to say the least. There's no doubt about how it's helping, but will be frustrating if even with Remicade's assistance I remain steroid dependent.
 
first loading dose today.....its 4am and i havnt had any sleep om so nervous. not sure if my stress is from a 4hr iv or because ive had so many meds not work and ive been out of college and life for so long i just want this all to stop.....22yr old psych phd hopeful in fl us, crohns disease, genetic narrowing
 
Hey SunshineSam. It's an easy procedure and usually makes you feel a lot better. Be ready for a nice nap. I get my Remicade in Orlando, too. Good luck today!
 
Heyo, I'm surprised I didn't join this group sooner <.>

I've been taking remicade as my main medication now for over a year every 4-5 weeks. I can't last longer than that and it seems every other med I try is a flop. Pentasa and other generic brands gave me kidney pain, 6mp made me lose muscle strength, and pred I had the worst reaction to last time I was on it. Almost psychotic on that stuff, ugh. So yeah. My routine is essentially show up, get the IV, eat, sleep the rest of the time, another 5 weeks. But I still have a lot of pain and such that I haven't gotten full control of.
 
Hey ZombiePenguin. I guess I'm hanging out on this thread today. I'm still at every 8 weeks for the Remicade, but now am supplementing that with Entocort. I still get D sometimes, but no pain anymore. I also get more colds than I want because Remicade+kid in kindergarten does that.
 
See that;s what I find odd. I used to catch anything and everything before I was diagnosed. On remicade the worst I've gotten is a bad stomach and a bit of a headache. I can't figure that one out because I would have thought I'd be worse with my immune system supressed. But yeah, fight the colds and fight them hard D:<<
 
Yay I just got word I'm getting back on remicade after being off it for 4 months. I thought I would give it a go but started flaring as soon as the drug wore off. Had to wait as my GI was off sick and then I had to go through protocol. Mantoux testing xrays for tb. Blood work etc. So happy.
Its easy to take health for granted.....never again.
 
See that;s what I find odd. I used to catch anything and everything before I was diagnosed. On remicade the worst I've gotten is a bad stomach and a bit of a headache. I can't figure that one out because I would have thought I'd be worse with my immune system supressed. But yeah, fight the colds and fight them hard D:<<
I'll get sick, but don't notice/ experience most symptoms. Colds manifest as some sneezing and a day or two of light congestion/ discomfort and a sore throat, sometimes a low fever. Part of a suppressed immune system is that the response is compromised resulting in minimal to no symptoms of illness when infected. So, can get sick without realizing it or expressing minimal symptoms which can turn into something more serious if not recognized, treated or monitored.
 
See that;s what I find odd. I used to catch anything and everything before I was diagnosed. On remicade the worst I've gotten is a bad stomach and a bit of a headache. I can't figure that one out because I would have thought I'd be worse with my immune system supressed. But yeah, fight the colds and fight them hard D:<<
I never got sick when I was on Humira. I'm extra careful about germs. But, I can't do much about it when my kid gets sick, comes in my room when I'm sleeping, and rub his germy head all over my pillow.

Maybe, you are just being the right kind of careful?
 
Question: for those of you taking Remicade more often than every 8 weeks, did you have an anti-body test before increasing frequency?
I started at every with my loading dose and now do every 4wks. Going to every 6 wks after my next one. But will get antibody testing done before I start every 6 wks.
 
Question: for those of you taking Remicade more often than every 8 weeks, did you have an anti-body test before increasing frequency?
Yes but I actually had the test to check Remi levels and it came with the antibody test. My levels were low and I guess no antibodies so I increased the frequency. I did increase the dose after without checking antibodies again a couple months later.
 
Hi Everybody!

I'm new to this site and am learning how it works and what to do. To let you know a bit about me, I'm 19 years old, diagnosed at 14 with severe Crohn's Disease and at 17 with Rheumatoid Arthritis. I've taken a bunch of different meds over the years, finally settling with Remicade infusions and Melloxicam. I have been on Remicade now for just under two years, going every 6-8 weeks. The infusions usually kick in about a day or two after and last me a good 5&1/2 weeks before I start to have symptoms again, Crohn's and Arthritis related. I've had a some difficulty with the infusions, having different reactions to the medication like severe itching, difficulty and stopping of breathing, and lots fatigue. I'm sure this is normal but I'd like to hear about other people's responses to the infusions as well.

Thanks guys!
 
Hi
I would really appreciate it if you would take the time to read about my situation

I've been on Remicade for 2 years now and my Crohn's is in remission I am also taking 150mg of Azathiroprine a day witch I have been on for a long time. I've never had a problem during my infusions, however about 7 weeks ago I started to become itchy and red spots witch would appear be itchy I seem to get worse at night mainly on my arms thighs back stomache and Brest so wasn't sleeping very well I went to my GP he said it was allergies he put me on zertek tablet of a morning and 2 phanergon tablets at night and sorbalene cream didn't make a difference so he put me on steroids was a a low dose of 10mg made no difference he suggested I keep going up till I ended up on 85mg made no difference he suggested I see my gastroingelogist as it could be a side affect to the infusions. Witch I did she was not sure she said she hadn't ever had a patient get a side affect like this before. she told me to go off the steroids and booked me in to see a dermatologist he didn't seem to think it could be the infusions because I've been on them for 2 years he said I had Atopic dermatitis eczema he put me on 2 zertek tablets of a morning and 2 Doxepin capsules at night also advantage cream to put on where I was feeling itchy also changed to QV soap free wash and shampoo and conditioner and sorbalene cream. Two weeks on was no different only getting a bit more sleep due to the Doxepin but still waking up itchy. So went back to dermatologist he has put me on claratine instead of zertek and stronger Doxepin at night he suggested I go back to my gastroingelogist to discuss possibly going off the infusion I am due for next one in one week so I was wondering if anyone has gone through a similar thing? Just can't kee going on like this. My blood work had come back normal.
Thanks.
 
Hello,
I developed a patchy eczema type rash all over me after about 4 months on Remicade and have been living the rash for over a year. A Crohn's specialist doctor told me that rashes can be a side effect of Remicade, and I treat it with lots of moisturizers and various steroid creams prescribed by my dermatologist. It keeps the rash at a manageable level, but it's always there to some extent. You could talk to your GI doctor about other treatments for Crohn's, but the specialist I saw said that each medication only has about a 40% chance of working. Good luck.
 
Question: for those of you taking Remicade more often than every 8 weeks, did you have an anti-body test before increasing frequency?
My son was every eight weeks, but having major fatigue at 6-6 1/2 weeks so we checked levels and antibodies. Big fat zero on the Remicade levels and just barely starting to build antibodies. They've added Solumedrol to his infusions and bumped him to 6 weeks @ 7.5ml/kg. He's back to feeling great again.
 
Ok, next Remicade treatment October 30...doing much better and last Friday's colonoscopy show all signs of Crohns gone and in complete remission...GI is very pleased and said scope showed no damage in upper tracts, lower is healed, and that the colon is healthy and good...not sure how the Crohns started in June but I must say after the Preds NOT working at all, I am sold on the Remicade...feeling like I am on the real road to true recovery...
 
Thanks folks...this forum was so encouraging to read during the process and really kept me going during the long bad days...keep positive everyone...here's to you all!!!
 
Question: for those of you taking Remicade more often than every 8 weeks, did you have an anti-body test before increasing frequency?
I think I was tested for hepatitis, but nothing else. I've been on for a year and I'm staring to get rashes, But my gut is so much better.
 
My next infusion is Nov 17. I have been on Remicade for almost 2 years. I have had no side effects except for an annoying eczema type skin rash that is mostly controlled by steroid creams and moisturizers. I have some diarrhea, but no other symptoms and my weight is stable. I'm able to work full time (because the bathroom is right next door, ha ha!) I was on 6MP for about a month, but had to stop due to developing pancreatitis.
 
Hi!

I have taken my first two infusions of remicade so far. After the first infusion I thought I felt some relief for the first two days but after some fever I was back to living with the crohns symptoms. 11 days ago I had my second dose. I imediately felt a difference and since then I have been having firm BMs and only once a day :thumleft: .

Yesterday and today I feel horrible again. Can't belive it would or could switch so fast. My question is if this is normal? Now I'll have to wait for another 17 days before my third dose (which I hope will solve it :) ). Should I just wait for my third dose or is there something I could do?
 
Hi!

I have taken my first two infusions of remicade so far. After the first infusion I thought I felt some relief for the first two days but after some fever I was back to living with the crohns symptoms. 11 days ago I had my second dose. I imediately felt a difference and since then I have been having firm BMs and only once a day :thumleft: .

Yesterday and today I feel horrible again. Can't belive it would or could switch so fast. My question is if this is normal? Now I'll have to wait for another 17 days before my third dose (which I hope will solve it :) ). Should I just wait for my third dose or is there something I could do?
Try and hold out. The first 3 doses are about getting a good level in your body. Only once you have a good level will you see true results. The fact you felt slightly better briefly is a good sign.
 
Hi team
my humira has stopped working and I'm looking like going onto remicade , is there anything I should know or need to know about this drug .

I Was reading some scary stuff about adverse reactions whilst having the infusion , is this common or just something that effect a small amount of users .

Any advice would be great .

Thanks
 
I feel human again! Haha the 2 weeks leading up to infusions are always a quick decline then after everything settles back down. Was relieved there was no fever this time during the infusion :)

Silversurfer - I've never be too worried about Remicade, and this is my 3rd time on it over 9 years- risks for adverse reactions are standard regardless of which biologic you look at. If you initially did well with Humira, odds are you'll be okay on Remicade. I find it comforting that Remicade has been on the market for as long as it has with some very long term successes. I'd suggest checking with your GI dr. about premeds and asking if they provide them at your infusion location. Some clinics do not premed, but don't mind if the patient chooses for them self. There does seem to be extensive evidence that premeds consisting of an antihistamine like benadryl with some tylenol reduces likelihood of an adverse reaction during the infusion and lowers severity of side effects in the following days. I take comfort in knowing that if I were to be in the minority and develop an adverse reaction during any infusion the nurses/ staff are trained to deal with it.
 
@silversurfer, my son has been on remicade for just a few months, but hasn't had any adverse reactions or side effects thus far. In fact, he's felt better than he has since he's been diagnosed and he thinks the treatments are easy.

He gets hooked up, then eats/sleeps/watches videos while it drips. He doesn't get any antihistamine or tylenol or anything during the treatment. The IV nurse said they infuse everyone very slowly, and will give something if needed, but they don't do it if it's not needed. After infusions, he usually feels kind of tired the rest of the day, but is then OK after that.

He hasn't had much in the way of any side effects at all after infusion, except for some odd seasonal allergy type symptoms during the summer which was the first time he'd ever experienced those. Not sure if it was related to the remicade and it went away after a few weeks. He is also on Imuran, which I'm not thrilled about, but the GI wants to give remicade every chance to work effectively, and so far, we've had the most positive results we could have ever hoped for.

I understand the adverse reactions to be the exception not the rule, and you should be pretty well supervised during the infusion so if anything happens that is cause for concern, they can handle it immediately. We get our infusions @ the hospital, so we're right where we need to be in case something comes up.

I wouldn't worry too much, but it's always good to talk to your doc and make sure you know what to expect, and also what to look out for after treatment so you can report back.

Good luck to you - we were very apprehensive about remicade too, but it turned out to be the best decision we ever made (at least at this point anyway :))
 
I had my first Remicade infusion on March 16, 2006. I've been receiving infusions (5mg./kg.) every 8 weeks since then. I had great improvement with each of the loading doses, then gradually improved for the remainder of that year. I've been in remission ever since, and I think Remi is the best thing in the world.
I've never had an adverse reaction of any sort (I do take Zyrtec before each infusion to avoid histamine reactions) My GI has started to make noises about stopping Remicade, but I'm ignoring them completely. I don't want to go back to where I was for five years before Remi. 15-20 bathroom trips a day, bleeding, pain and complete lack of energy.
For anyone starting on Remicade, I hope you have the same good results I've had.
 

dave13

Forum Monitor
Hi team
my humira has stopped working and I'm looking like going onto remicade , is there anything I should know or need to know about this drug .

I Was reading some scary stuff about adverse reactions whilst having the infusion , is this common or just something that effect a small amount of users .

Any advice would be great .

Thanks
I urge you to bring your concerns to your GI.He/she may help relieve your concerns about actual numbers of reactions during infusions.You are monitored quite closely during infusions,especially during your loading doses.They keep a close eye on you.

I started infusions July of last year,15 months ago.I would get fatigued after infusions during the loading doses and go home and sleep.I was a bit fatigued for a day or so after.I still feel a bit fatigued after infusions but nothing like at the beginning.I would say I'm ready for bed a bit earlier the night of an infusion but feel able to get on with my day immediately after an infusion.

I have never had an adverse reaction during an infusion(knock on wood).
 
Definitely talk to your doc, read the literature, feel comfortable with whatever you decide.

I took a long time before I was willing to go onto Remicade. I was very concerned about the biologics as a class altogether. I'm still not thrilled that I have to be on a biologic at all.

But I'm also very glad that I got comfortable with it, and gave it a go, because this has worked textbook perfect for me. It has worked even better in tandem with methotrexate than it was with 6mp, so sometimes it's a strange tweak that gets things ideal.

OK, I did get shingles. That sucked. I'm also glad I didn't pull the med, because it never happened again, and the med continues to work. Without the meds I am on, I experience extraintestinal symptoms in a matter of days. I'm fairly sure I'd crash intestinally without them.

I've had to move from 8 weeks to 6. I know that at some point, the party will probably end, and I'll be moving in your direction with Humira, probably.

But I hope it doesn't happen soon.

I finally felt OK about things when the infusion nurse who has been infusing people with RA for years before any CD patients started streaming in said that she had never had one anaphylaxis event from remicade infusions.

I know they happen, but that illustrated how rare they are in a way that I finally could accept.
 
Hey all, :sign0144:

I just received the call to set up my first infusion for Oct 28. Feeling a bit nervous about it all, not entirely sure why though. I'm already on methotrexate injections and plaquenil to control my RA and my GI seems to think the my crohns is what is causing my RA so the remicade should help me out all around. Maybe it's the process that I'm nervous about, or just the fact that I'm medicating my body even further. I would so like to just stop taking all my meds and live a normal drug free life.
 
cdnrose, I think we all feel that way! But, if it comforts you at all, I do MTX injections weekly and Remicade every 6 weeks, and I can honestly say that the MTX side effects are way worse than anything I get from the Remicade (that didn't come out as comforting as I had hoped...).

In all seriousness though, I understand being nervous about the infusion process the first time, but it is fairly straightforward. Go into the center/hospital and get checked in, get a line started, take your pre-meds (if any), then they'll hook you up to the IV bag and you'll hang out for a few hours. Typically two hours and fifteen minutes is the minimum time to actually infuse the Remicade, so be sure to bring a book/laptop/DVD or something else to do because you'll be there for a while (generally 3-4 hours for me, all told). Honestly, I actually look forward to my infusions because they're the only true down time that I get. I turn off all of my electronics and use it to just destress a bit, as weird as that sounds. I'm usually pretty exhausted for 2-3 days afterwards, but I've found that as long as I don't push myself too far I usually don't get very sick. I have a limited appetite and sometimes some nausea, but I have a standing order for IV Zofran at the hospital as well as a prescription at home, so that helps.

Good luck! I hope it helps you as much as it helps me!
 
Hi--new to the forum. My daughter was diagnosed with Crohn's ileitis in the spring of last year, and she was 13 years old then. Her doctor favored the step-down approach and put her on Remicade. She is still on it. Her work up last spring demonstrated complete resolution of the inflammation but with residual stricture in her terminal ileum.

My advice to all new to Remicade users is to be patient with it and be proactive. Initially, my daughter continued to complain of abdominal pain and obstruction symptoms while on Remicade. She started with the usual loading dose of 2-4-6 and then every eight-week infusions thereafter. She was also on prednisone and metronidazole concurrently due to the severity of her inflammation. It was frustrating and heart wrenching stuff. I was ready to throw in the towel, but we persisted. I was in touch with her doctor every time she has flare ups. It took almost a year to control the beast.

What her doctor did was to titrate up the frequency of her Remicade infusion. In addition, her doctor also placed her on an immunomodulator--6MP, because she started to develop antibodies. Her immune system is out of whack and is launching a defense against the Remicade counteracting it's designed effect--which is to control the inflammation. Right now she on every 4th week infusion and oral 50 mg of 6MP daily. Her prednisone and metronidazole was stopped early this year when she was showing signs of remission. This is controlling her symptoms. She is able tolerate most foods like beans and nuts and unpeeled apples.

The lesson so far we have learned from our ordeal is that if you experience flare ups while on your current medications, call your doctor. Something ain't right. What that something is might be (1) you don't have enough of the drug in your system and/or (2) your body is developing immunity to the drug. Your doctor can tell what is the appropriate Remicade level for you and should be ordering Remicade level checks every so often to ensure adequate Remicade levels in your system. If they are not, you should ensure that they do. This is important because if you don't have enough of this drug in your body, your immune system will sense it's weakness and launch a counterattack. Once you develop immunity to this drug, that's it--you can longer use this drug. You'll have to switch drugs, and I don't know how many more drugs are out there. If I have a disease, I would rather be on the cutting edge of treatment, and Remicade is it, for now.

I would also caution from switching medication treatments right away, because as my daughter's doctor explained it, Crohn's disease, along with other classes of autoimmune disorders, is the failure of the immune system to recognize friend or foe. When you introduce a new drug in your body, your immune system is on alert. It will slowly but surely build an army of antibodies to counteract it. That's why it's important to ensure that you take your medication as ordered to maintain a stable and adequate level of the drug in your system. It's like an ongoing battle happening inside of you. If you keep switching drugs, it may not be as effective the second time around because your immune system have that drug programmed in. All it will have to do is to dial it in and send their soldiers of antibodies to overrun the drug rendering it ineffective.

As with any drugs, it comes with side effects. So your doctor should be monitoring not only your Remicade levels but your CBC. My daughter gets CBC drawn every time she comes in for infusion. In addition to CBC and Remicade levels, I would also suggest that you ask your doctor to check your liver enzymes. Yes--ask your doctor as sometimes they forget. Her liver enzymes were checked in August, related to her anemia (which is another thread of its own), but her transaminases were rising. Funny thing too, they told me back in August that her labs were OK. And when I got to checking her labs myself in September, I noted her ALT was on the rise. I initiated the monitoring and here we are two months later, her liver enzymes were rising even more. So now, I just got a note from her doctor to hold her 6MP for a week and recheck her liver function in a week's time. Be vigilant. Doctors are human too. Lesson learned.
 
Last edited:
Wow...here I am...on Remicade for going on 3 years and my Dr. has yet to test me for the amount of Remicade in my system ? :eek2: sometimes I don't think it is even helping me either !
 
when are everyone else's next infusions?

so far the schedule is:
Nov 15: katiesue
Nov 20: kromom
Dec 1: RHOV

it would be cool if some of us were getting our infusions at the same time!
My 54th infusion will be tomorrow, October 28.
 
sometimes I don't think it is even helping me either !
What makes you think it's not helping?

Usually, I figure there's no point in running tests for something unless they (or you) think there's cause, a current issue that may point toward antibody building (such as increase/ ongoing persistence in infections. This is a key indicator I've been taught to keep an eye out for as it can be a predictor that meds are not helping as they once were) or higher chance of something occurring. I'd see them not running an antibody test generally as a positive thing :dusty:
 
Well duh panda...you probably are right about the Dr. Not running the antibody test then. I don't have any major problems going on...so leaving well enough alone might be best. Besides...it's probably not cheap.
I sometimes wonder if Remicade is working because I still do have problems " normal" people don't have. But at least I haven't been horribly sick like previously .
 
Well I went for my first infusion yesterday, it was pretty uneventful. The only issue was trying to find a good vein. I have great veins but for some reason the one in my hand wouldn't allow the drip. The needle was in and she turned the saline on but it wouldn't actually pass through so we had to move it up to the inside of my elbow which was fine. I just felt a bit tired afterwards but no worse than a stressful day at work. You'd think that you would feel like a million bucks after having $3400 of liquid gold coursing through my veins but alas I did not :ylol:

I also had an appointment with my rheumatologist after my infusion yesterday. It's the first time I've seen him since my crohns diagnosis. Currently I get bloodwork done on a monthly basis due to being on methotrexate for my RA and I go twice a year for more more complete bloodwork to check my ANA, ENA, antiDNA and a few other things. Since my GI hasn't ordered any other blood work my rheumy has bumped up my semi annual blood work to 1/4'ly. He said something about the remicade can cause more RA symptoms so he will be watching it closely. My RA is in complete control at this point so I hope it doesn't slide back at all. I was hoping to maybe get off some of my RA meds but he doesn't seem to like that idea at all. The methotrexate help with the antibodies and the plaquenil is something that needs to continue for my RA :(
 
Well duh panda...you probably are right about the Dr. Not running the antibody test then. I don't have any major problems going on...so leaving well enough alone might be best. Besides...it's probably not cheap.
I sometimes wonder if Remicade is working because I still do have problems " normal" people don't have. But at least I haven't been horribly sick like previously .
Glad things are better then they have been - I know that place where meds are certainly probably must be doing something, but have them not work to the point of inducing remission or complete disappearance of symptoms. Hoping everything continues to keep in a better place.
 
I've taken 3 doses now, last one was about 2 and a half weeks ago. I've felt better after every dose I've been getting, I feel specially well a few days after the dose. Last week havent been so good for me though. I have loose BMs and feeling ill. I also have had the same sympomts inbetween every dose. It's much better than before I started with remicade although it is far from perfect.

I'm wondering if I should ask to get the 4th dose earlier? I hope that this still means remicade could work for me.

And my dr now wants me to cut down on the entocort which I have been using 3x3mg since July. I'm not sure that's such a good idea?
 
Hello All,

Well... I've now failed Humira and Entyvio. I'm told it is now onto Remicade. As you can see from my signature, I have PA fistulizing CD. My tracts have been open for over 2 years now. I sought a second opinion in NYC. I'm seeing a new surgeon next week.

Just wanted to introduce myself and ask about any side effects that y'all have faced when starting Remicade. Thanks in advance.
 
Does remicade cause rapid infections and sickness?

DEAR HAN SHAN HI.I WISH YOU WELL.I WONDER IF REMICADE HAD ANY SIDE EFFECT ON YOU.
AFTER USING IT YOUR IMMUNE SYSTEM WILL BE SUPPRESSED HAVEN'T YOU GOTTEN SICK AND INFECTION MORE FREQUENTLY!!???
LIKE CONTINUOUSLY GETTING SORE THROUGH AND COLD OR EYE AND EAR INFECTIONS.

BECAUSE WHEN YOU GO OUT TO WORK YOU MEET PEOPLE OUTSIDE HOME THAT MIGHT BE SICK LIKE HAVING A VIRUS OR COLD AND SINCE YOU ARE TAKING REMICADE YOU SHOULD GET SICK RAPIDLY.

HOW REICADE WORKS FOR YOU AND DON'T YOU GET SICK RAPIDLY?COULD YOU LET ME KNOW

BEST WISHES
 
Last edited:
Hello All,

Well... I've now failed Humira and Entyvio. I'm told it is now onto Remicade. As you can see from my signature, I have PA fistulizing CD. My tracts have been open for over 2 years now. I sought a second opinion in NYC. I'm seeing a new surgeon next week.

Just wanted to introduce myself and ask about any side effects that y'all have faced when starting Remicade. Thanks in advance.
Hoping Remicade helps GABoy;

Side effects occured most severely during my loading doses. Difficult to manage headaches/ migraines would start around 48-72 hours after infusion, and usually let up within a day and a half. Fatigue/ exhaustion would increase for the first weekish impacting exertion level/ ability, stamina, etc in the day to day. I've noticed that since getting through the loading doses my post-infusion migraines aren't lasting as long or as intensely. I spiked a fever during second loading dose but slowing down the infusion rate dropped it and I haven't spiked a fever again since sticking with a slightly slower rate. Wishing you all the best.
 
Hello,
I have been on Remicade for about 2 years and have had no side effects, except for a patchy eczema-like rash that I manage with steroid creams. It's supposed to be a rare side effect. I do get infections more often than before I was on Remicade, but I'm not constantly sick. I work in an office and try to wash my hands a lot.
 
Sounds like all the other meds I've been on: some have no side effects; some have bad side effects. I guess I won't know until I start. As I was just dosed with Entyvio at the beginning of this month, they want to wait until mid December to start me.
 
I haven't had any severe side effects. I've definitely gained weight since starting it. Whether that's a side effect in the strictest sense of the word, I'm not sure.... Maybe I'm just feeling better enough to eat foods that make me fat? Lol ... I have noticed my skin is much more dry and my hair is definitely thinned out a lot as well.
 
I get a steroid with my infusion, which makes me really hungry afterwards. The Remicade makes me very tired, and I usually sleep/rest during my infusion. It's the only thing that's kept my fistulas from recurring. Knock on wood. I got my life back.
 
I got my first Remicade infusion 2 days ago, last night I started experiencing pain in my teeth and one tooth is aching. I read up on Google that aching teeth are a side effect. I am wondering if anyone else is experiencing this and if it will improve or get worse as the treatment goes on. Otherwise other than some fatigue I am feeling fine. I'm in my late 50's and my teeth are not the best.
 
I got my first Remicade infusion 2 days ago, last night I started experiencing pain in my teeth and one tooth is aching. I read up on Google that aching teeth are a side effect. I am wondering if anyone else is experiencing this and if it will improve or get worse as the treatment goes on. Otherwise other than some fatigue I am feeling fine. I'm in my late 50's and my teeth are not the best.
Its difficult to say - I've not heard of anyone else who has had toothache from remicade but if it is listed as a side effect then it is possible. On the other hand, it could be a coincidence and your toothache could be independent of you taking remicade. You should talk to your consultant about this, and your dentist.
 
I go see my GI in the next week, today it is much more tolerable. I had a bad bout of constipation and took bisacodyl and now feel much much better. So far so good for Remi.
 
I go for my first infusion on thursday then again on the 31st. Will be doing infusions every 4 weeks. I was on humira since july and havent got a shot for 2 weeks. Im confused on how much it will end up costing. Im in the remistart and have an 80-20 insurance. Guess ill find out soon. Anything i really need to know besides bringing a phone charger and head phones?
 
Make sure you're well hydrated so that they can find a vein easily. If you want to nap, you can bring a little blanket with you. At my clinic the chairs recline, and they usually dim the lights.
 
I start Inliximab (Inflectra) on the 30th. Cant wait tbh, just want to feel well again. Humira now has failed after nearly 5 yrs, it did me proud but as commonly predicted on here 5 yrs is about it.
Rgds
Grant
 
Can someone help answer this. My dr said i needed the copay remistart card activated for my insurance to cover it. I called remistart number and they said i had to get the infusions send them a bill and then they put it on the card. How exactly does it work?
 
1st infusion seems ok. Blew a vien in begining but all else seems fine.
I think that's the worst part about the infusion. I always make sure to drink a ton of water before I go and stay warm on the ride there. Warm, hydrated veins are easier to stick! I find those pocket hand-warmers to be really useful.
 
Hi all, I was pretty tired during the first infusion. Also, that evening, I had some dizziness. It has not been anything disabling, but annoying nonetheless. It seems to be recurrent at night and in the morning. I do have an underlying vertigo that rears its head every once in a while. However, this dizziness is much less intense than when the vertigo hits.

I guess my question is whether or not I should be concerned. My inclination is simply to recognize this as a minor side effect and to deal with it.
 
How is your blood pressure when you're getting your infusion? Mine drops a lot, last time it was 79/56. That could make you dizzy.
 

Lisa

Adminstrator
Blood pressure dropping is common when getting infused. Mine usually drops a little, not too badly but I also deal with raised blood pressure.

Had my #65th infusion (but who's counting haha) yesterday.....had to wait about a half hour to start as my BP was waaaay high for me (170/85 or so)...but that was taken after I got solumedrol and Benadryl - it did come down to about 142/80 and the infusion was started.

Feeling like my BP is up today too - getting a flushed feeling on and off and just feeling 'off'.....did take my BP meds and have been taking them this week (I'm a bad patient - haven't been taking them regularly!)....will take my pressure when I get home and see how it is doing....if not getting better time to call the 'other' doc I guess...sigh.....NOT what I need during the holidays!
 
My husband's BP is ALWAYS low, especially on infusion days. The 1st time they didnt want to proceed but his GI gave the green signal and told us not to bother about it. So now they just keep an eye on him and doesnt stop unless he feels light headed.
 
My BP is generally on the lower side anyways, as I have orthostatic hypotension, but my last few infusions BP has been dropping to about 85/50 or something in that vicinity. The nurse didn't seem concerned, and neither was my doctor. I usually stay mostly laying/sitting for the next 48 hrs or so, and by then it's mostly cleared up. I also take fludrocortisone and midodrine PRN to help raise my blood pressure when I'm feeling really lightheaded, etc., so you might ask about something like that.
 
If they're having trouble getting the IV started, ask them to put a warm, wet cloth on the area before they try. This can often help. And yes, being hydrated is important.

I get my infusion in a comfy recliner chair. Because I'm reclining, both my heart rate and blood pressure will go down during the course of the two hours, but they do this whether or not I'm getting an infusion if I recline for a while. I take an antihistamine (Zyrtec) and Tylenol before I leave home. I've never had to have a steroid before my infusions (good thing since they elevate my blood glucose dangerously.)

I'm starting to see people who have been on Remi successfully for five or more years opting to go off it. I'm also seeing most of them going into flare after six to eighteen months. I'm currently pushing my GI away from taking me off, so far successfully.
 
Had my 1st infusion today, felt a bit fuzzy headed & slightly nauseous @ the start but beyond that no obvious side effects.
BP stayed normal throughout.
Good luck everyone
Grant
 
Had my 1st infusion today, felt a bit fuzzy headed & slightly nauseous @ the start but beyond that no obvious side effects.

BP stayed normal throughout.

Good luck everyone

Grant

I'm having this same symptom. It seems to recur every morning. As the day goes on, I feel better, but sudden movements create the same symptom. I had my second infusion on Tuesday.
 
Hi GABoy, I was too quick to say no side effects apart from the fuzzy head & sleepiness. Because that evening I had some of the worst diarrohea ever & thats saying something for me. I ended up going to bed early, felt dreadful. Now 2 days after I would say the diarrohea has decreased & I'm not so sore down below. The diarrohea is still there but not as frequent so I see that as a positive..hopefully.
Rgds
Grant
 
Jackal, I had my Remicade infusions at work. The nurse would come and hook me up and there were no problems. Did this for 5 years until I had to stop Remicade.
The pharmacy would deliver the medication the day before to my place of employment and we had a small refrigerator to store the meds and the nurse would show up the next day at noon so I could go home right after the infusion. They said they didn't have any other patients having this done at work except me. I could do my work (administrator of a county) and not have to miss work.I had 36 infusions and never had a problem.
 
jackal1/1/2015. you have to completely retrain yourself to not touch anything in order to not get sick.Wear mask to the dr. office, use a tissue when using the credit card pen anywhere, don't touch door knobs, elevator buttons , esculator rails, magazines in dr. offices etc. Use paper towels to open bathroom doors when you exit, wipe down your grocery cart with anti bacteria wipes, be careful at the pharmacy, avoid crowds.I have had thyroid cancer, lymphoma,Imurin and Remicade and never got sick because I am sooo cautious about what I touch and who I'm around. I tell all my friends in advance if they even think they are coming down with something or someone in their family is sick to let me know. I stay away from small children and babies and don't get in pools or the ocean. You really have to work at it and think about it all the time.
 

Lisa

Adminstrator
jackal1/1/2015. you have to completely retrain yourself to not touch anything in order to not get sick.Wear mask to the dr. office, use a tissue when using the credit card pen anywhere, don't touch door knobs, elevator buttons , esculator rails, magazines in dr. offices etc. Use paper towels to open bathroom doors when you exit, wipe down your grocery cart with anti bacteria wipes, be careful at the pharmacy, avoid crowds.I have had thyroid cancer, lymphoma,Imurin and Remicade and never got sick because I am sooo cautious about what I touch and who I'm around. I tell all my friends in advance if they even think they are coming down with something or someone in their family is sick to let me know. I stay away from small children and babies and don't get in pools or the ocean. You really have to work at it and think about it all the time.
While you should try to stay away from anyone who is obviously sick, my experience has been that as long as you take basic precautions (and this was backed up by my doctor) you should not worry too much. I work in a field where I am on contract with the general public on a daily basis, with up to 10,000 people at any given day walking through the areas I frequent. I am actually the most healthy person in my family, and have been since my daughter was born ten, almost eleven years ago.


I have never worn a mask, use hand sanitizer here and there....but mainly stay away from sick people and if I do come in contact with someone I do make sure I wash my hands thoroughly.
 
I had my second infusion 11 days ago, and in the past few days the fistula on my right side inside the rectum has been elevated and soar. For years it has behaved and I worry that this could become another abscess. Exercise aggravates it so I have taken it easy. My blood pressure has gone up after the infusion and does not want to go down, I've been on blood pressure pills for years and take Lo dose Aspirin for a thinner.
Been feeling faint, and feverish and don't want to do the regular things I used to do and sit around on the couch a lot. This is not characteristic of me. However, I have been off my game for the past few months, only it seems Remicade is exasperating the problem more. A surgeon is taking a second opinion on my situation with an MRI on pelvis to investigate for the cancer possibility.

About me, I've been on the colostomy bag for 15 years due to fistulas on my rectum. I had part of my large bowel along with a few feet of small bowel and the appendix removed.
I am retired and refuse to leave my remote rural home I have had for over 30 years.
 
Well, I'm out of the club. I had what the docs think was an allergic skin reaction to the med. My GI doc doesn't want to risk me going back on, so I'm looking at next options (probably Humira). It was a funky year. I'll poke my head in here now and again.
 
So I had my 6 month follow up colonoscopy after starting remicade and it showed significant healing in my lower small intestines and large colon! Just happy about the news and wanted to share!
 
So glad for you. I had clean scopes (My doc said he could only tell I had UC because of the scarring from old ulcerations) starting two years after I began Remi. On my scope two years ago, they found one ulcer. This year, clear again. When it works, it's a wonderful thing.
 
So glad for you. I had clean scopes (My doc said he could only tell I had UC because of the scarring from old ulcerations) starting two years after I began Remi. On my scope two years ago, they found one ulcer. This year, clear again. When it works, it's a wonderful thing.
Glad you are doing well too!
 

dave13

Forum Monitor
I agree jujub. We don't want to have infusions,but when it works it is a good thing. I am,hopefully,having a seton removed in two weeks. This will be the second one I have removed. I have to say remicade has helped me. This Friday will be infusion number 15.
 
Hi! I am a 22 year old female who was just diagnosed with Crohn's within the past month. However, I had been struggling with fissures, fistulas, and perianal abscesses for the last 1.5 years before diagnosis (crazy no one caught on, right?)
I had my very first infusion yesterday. I currently have one seton in place (from an abscess that turned into a fistula). I was just wondering how long it was before anyone saw results? Specifically regarding fistula healing/swelling/tenerness.
 
Hey hkspence,

I've been back on Remicade for what will be a year this June. Just finished MRI and scope to see where things are at. Fistula/ abscess from a year ago is no longer inflamed/ active, is still there but essentially a non-issue. I am still sore/ have chronic pain at the fistula point because of how it is impacting surrounding muscle tissue but it is much more tolerable then before and there is no longer an abscess or fluid. If talking the ever-popular pain chart say down from a daily 7-8 to 3-4.

I started noticing a significant decrease in pain/ tenderness in the area after loading doses - so say 2-3 month mark - and can only speak based on my own timeline/ experience.
 
Hey hkspence,

I've been back on Remicade for what will be a year this June. Just finished MRI and scope to see where things are at. Fistula/ abscess from a year ago is no longer inflamed/ active, is still there but essentially a non-issue. I am still sore/ have chronic pain at the fistula point because of how it is impacting surrounding muscle tissue but it is much more tolerable then before and there is no longer an abscess or fluid. If talking the ever-popular pain chart say down from a daily 7-8 to 3-4.

I started noticing a significant decrease in pain/ tenderness in the area after loading doses - so say 2-3 month mark - and can only speak based on my own timeline/ experience.
Glad your doing better! This is not an easy journey 😎
 
Hi! I am a 22 year old female who was just diagnosed with Crohn's within the past month. However, I had been struggling with fissures, fistulas, and perianal abscesses for the last 1.5 years before diagnosis (crazy no one caught on, right?)
I had my very first infusion yesterday. I currently have one seton in place (from an abscess that turned into a fistula). I was just wondering how long it was before anyone saw results? Specifically regarding fistula healing/swelling/tenerness.
it may take at least a year to see some progress! Patience is key 😎
 
Hi! I am a 22 year old female who was just diagnosed with Crohn's within the past month. However, I had been struggling with fissures, fistulas, and perianal abscesses for the last 1.5 years before diagnosis (crazy no one caught on, right?)
I had my very first infusion yesterday. I currently have one seton in place (from an abscess that turned into a fistula). I was just wondering how long it was before anyone saw results? Specifically regarding fistula healing/swelling/tenerness.
I haven't been on remicade too long, but being on a diet of ensure is really helping with damage control:dusty:
 
Hi! I am a 22 year old female who was just diagnosed with Crohn's within the past month. However, I had been struggling with fissures, fistulas, and perianal abscesses for the last 1.5 years before diagnosis (crazy no one caught on, right?)
I had my very first infusion yesterday. I currently have one seton in place (from an abscess that turned into a fistula). I was just wondering how long it was before anyone saw results? Specifically regarding fistula healing/swelling/tenerness.
This sounds almost exactly like my story! I'm 24 and have been diagnosed with Crohn's in 2012 after having abscesses and fistula for.. well.. around 3 years.

I don't have setons (never had them for more than 2 weeks), lucky me. :shifty:
I've now been on Remicade for over 2 years (first 300mg every 8 weeks, now every 6 weeks because my levels were low) and I haven't had any abscesses since! My fistula is 'calm': no pain, no heavy drainage, no stench, etc.
But that has gone very gradually, and for a long time I thought it didn't work, because, well.. the fistula is still there. But I've finally come to terms with the fact it might never fully close, but at least now it's calm, and I no longer need pads in my underwear every hour of every day (that was my goal, how stupid it might seem ;)).

So... a lot of patience is needed, but I'm happy as long as I don't get any new abscesses.. wait... I almost forgot: I got one tiny abscess in a weekend in october, I wanted to call my doctor on monday, but by then it was suddenly gone, leaving me with some puss and pain for 2 days, after that everything was back to 'normal'...
 
My fistulas, I had about six, started closing after my second infusion. That was about a year and a half ago. I haven't gotten any new fistulas or abscesses since, and I'm in full remission. When it works, Remicade is a game changer.
 
Had a scope 2 weeks ago. Colon shows no signs of inflammation! Fistula is still present but is small and nothing appears to be exiting it. Some polyps but only inflammatory, benign and no presence of pre-cancer cells. ileum is a wreck but not an angry wreck so better improvements all around then I've seen since 2011. Started loading doses June 2015.
 
My last infusion was infusion number 23. At one infusion a month I am almost at 2 years.

No remission but it miles better than I ever was on prednisone, or Imuran (or combined). So glad to have it. I have really sucky veins now but alas I am okay with dealing with a couple pokes to be able to function.
 
Sucky veins because of the infusions? That sucks!
I've been on the stuff for almost 2,5 years now, and I'm still reaaaaally easy to poke. Time and time again in the exact same spot in my elbow. I feel quite lucky in that regard :D
 
This sounds almost exactly like my story! I'm 24 and have been diagnosed with Crohn's in 2012 after having abscesses and fistula for.. well.. around 3 years.

I don't have setons (never had them for more than 2 weeks), lucky me. :shifty:
I've now been on Remicade for over 2 years (first 300mg every 8 weeks, now every 6 weeks because my levels were low) and I haven't had any abscesses since! My fistula is 'calm': no pain, no heavy drainage, no stench, etc.
But that has gone very gradually, and for a long time I thought it didn't work, because, well.. the fistula is still there. But I've finally come to terms with the fact it might never fully close, but at least now it's calm, and I no longer need pads in my underwear every hour of every day (that was my goal, how stupid it might seem ;)).

So... a lot of patience is needed, but I'm happy as long as I don't get any new abscesses.. wait... I almost forgot: I got one tiny abscess in a weekend in october, I wanted to call my doctor on monday, but by then it was suddenly gone, leaving me with some puss and pain for 2 days, after that everything was back to 'normal'...
Do you know how they decided to take your seton out? My first one (a year ago) I only had for a few weeks, as they took it out for another surgery. This one I'm not sure when they'll take it out. I know that it's there to promote drainage so that a backup/abscess does not occur. I don't mind that - but sometimes, especially when it's seeping and/or I'm working out, it will make me chafe in between my cheeks and man does that hurt! It's like rug burn! Hoping since I'm on Remi they may take it out soon?!
 
I agree jujub. We don't want to have infusions,but when it works it is a good thing. I am,hopefully,having a seton removed in two weeks. This will be the second one I have removed. I have to say remicade has helped me. This Friday will be infusion number 15.
Just asked this to someone else with a seton - Do you know how they decided to take your seton out? My first one (a year ago) I only had for a few weeks, as they took it out for another surgery. This one I'm not sure when they'll take it out. I know that it's there to promote drainage so that a backup/abscess does not occur. I don't mind that - but sometimes, especially when it's seeping and/or I'm working out, it will make me chafe in between my cheeks and man does that hurt! It's like rug burn! Hoping since I'm on Remi now they may take it out soon?!
 
Top