Remicade Club Support Group

Hello, haven't been on this forum for awhile. My son diagnosed last jan age 15. Had another bad flare in April and started him on remicade along with his imuran he was already taking. Worked instantly and was doing great, no pain, no D, eating well gaining weight finally.
This last few months however noticed appetite decreased and now losing a few pounds..he says he has no pain, no D (actually seems to go only every 3 days). He says he's fine but I'm worried. Last remacide treatment his blood work was normal.
Anyone else have lack of appetite? Should I be concerned even if his poops look ok? This is hard dealing with a teenage boy who really doesn't want to talk about his bowels..

A concerned mom:frown:
 
Maxwelljax said:
New issue...just when I thought it was finally working. Would like to know if anyone has experienced this. 2 weeks after my last infusion started feeling numbness in 2 fingertips left hand. Thought maybe I had pulled something. We had been out on the boat in rough water and hitting lots of wake. Since then it's only gotten worse. Entire hand some times and even feels like it maybe be going up my arm. Other times just 2 fingers. Due for next infusion this week. So I've stared researching and apparently this may be a Remicadee side effect. Rare risk if drug induced MS! Seriously...wtf! Any thoughts anyone?
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I had numbness/tingling in my hands as well. When I informed my GI of this he sent me to a neurologist to get checked out. I was also seeing the neurologost as well, due to the horrible migraines I've been getting, due to Remicade. His only advice to me was to switch meds if it is becoming that bothersome. He did understand too, that it's not always an option to switch meds and if that was the case for me to go back to see him. My Remicade levels were checked to see if I could lower my dose, according to my GI, they are not too high and not too low. Currently considering Humira or Cimzia, because the migraines and light/noise sensitivity are getting worse.

I was also tested for drug-induced lupus and that came back negative.
 
Spershick said:
Hello, haven't been on this forum for awhile. My son diagnosed last jan age 15. Had another bad flare in April and started him on remicade along with his imuran he was already taking. Worked instantly and was doing great, no pain, no D, eating well gaining weight finally.
This last few months however noticed appetite decreased and now losing a few pounds..he says he has no pain, no D (actually seems to go only every 3 days). He says he's fine but I'm worried. Last remacide treatment his blood work was normal.
Anyone else have lack of appetite? Should I be concerned even if his poops look ok? This is hard dealing with a teenage boy who really doesn't want to talk about his bowels..

A concerned mom:frown:
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Do they run labs with every infusion? He may be asymptomatic but show something in labs.
 
I had my fourth infusion today. Came home and slept. This is the first time I've been wiped out after an infusion.
 
DJW-I had my 5th infusion on 12-30 and it is the first time I wasn't fatigued after.I usually come home and nap for a few hours.I'm also fatigued for a few days after the infusion each subsequent time.

I had an appointment with my colorectal surgeon before the holidays and he said my fistulas were looking better than he expected them to look at this point in time.Perhaps his observation combined with not being fatigued is a sign Remicade is working for me.Lets hope so.

I hope everyone has a better 2015!
 
dave13 said:
DJW-I had my 5th infusion on 12-30 and it is the first time I wasn't fatigued after.I usually come home and nap for a few hours.I'm also fatigued for a few days after the infusion each subsequent time.

I had an appointment with my colorectal surgeon before the holidays and he said my fistulas were looking better than he expected them to look at this point in time.Perhaps his observation combined with not being fatigued is a sign Remicade is working for me.Lets hope so.

I hope everyone has a better 2015!
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Dave, Has or will the Colorectal Surgeon removed any or all of the fistula setons yet? I just completed Infusion #3 on December 18,2014. I have not had any setons removed yet. The fistulas with setons still appear to be draining & the recent fistula that doesn't have a seton still has drainage more significant than the fistulas with setons. Did your Colorectal Surgeon provide any thoughts on when you may expect fistula drainage to decrease?
 
Jay Woodman said:
Dave, Has or will the Colorectal Surgeon removed any or all of the fistula setons yet? I just completed Infusion #3 on December 18,2014. I have not had any setons removed yet. The fistulas with setons still appear to be draining & the recent fistula that doesn't have a seton still has drainage more significant than the fistulas with setons. Did your Colorectal Surgeon provide any thoughts on when you may expect fistula drainage to decrease?
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Hi
I'm told by my colorectal surgeon I will have my setons for several years,at least,in his opinion. I'm hoping it may be not as long as he previously thought since they are looking better then he expected them to look.

My drainage has reduced since the fistulotomy in July. I still have significant drainage,it seems to smell more and it is more 'substance' rather than clear liquid. Doc observed what the drainage looked like and said that,along with the smell,it was normal and going well.

I have five fistula and three have setons. The two without do not seem to be getting worse and I have not found any new fistulas forming.

I'm prepared to have the setons for the long haul,for years if need be. I will be pleased if it isn't so lengthy a time as predicted.
 
I have been gaining weight since the Remicade. Is this normal? I have been off Prednisone for awhile. I usually start losing weigh but I seem to be retaining a lot of water. I have had 5 infusions.
 
Cat I too have gained, about 15 lbs since starting. It's been a year. I guess it's not that abnormal actually because we are absorbing more nutrients. For me that's good for my iron level and malnutrition but I was already overweight to begin with. So it does present a problem.
 
Dave13 and Jay- I saw my surgeon last month and got a bit of a blow. Basically I have no drainage and things look good but the seton shouldn't be removed because the fistula is deep in muscle and will abscess again. Told me if I get to the point where I can't handle it he will remove but recommends a colostomy or reconstructive surgery to move rectum if I have seton removed. So I'm like you Dave...in for the long haul. I hate it but really it only hurts occasionally and I can handle it.
 
Maxwelljax said:
Dave13 and Jay- I saw my surgeon last month and got a bit of a blow. Basically I have no drainage and things look good but the seton shouldn't be removed because the fistula is deep in muscle and will abscess again. Told me if I get to the point where I can't handle it he will remove but recommends a colostomy or reconstructive surgery to move rectum if I have seton removed. So I'm like you Dave...in for the long haul. I hate it but really it only hurts occasionally and I can handle it.
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I feel more discomfort than pain now. It's not like we can forget about setons, is it. Kinda hard to ignore. :D As I get use to them I am doing more. The one consistent thing is the pain getting in and out of vehicles. Trying not to drag the setons and tug on them. That's a bit uncomfortable.
 
To those who mentioned weight gain ..me too ! There is never a rhyme or reason for the fluctuations in my weight. Weaning off predinsone ...starting it ..in the middle of a course.. my body just does exactly what it wants to. I know I feel delightful when the scale goes down and then boom ! Up goes the number and down go my spirits. Silly I guess but I'm sure some can relate. We should just be thankful for each day we feel semi- ok right ?
Been on Remicade for 2 years .
 
Maxwelljax said:
Dave13 and Jay- I saw my surgeon last month and got a bit of a blow. Basically I have no drainage and things look good but the seton shouldn't be removed because the fistula is deep in muscle and will abscess again. Told me if I get to the point where I can't handle it he will remove but recommends a colostomy or reconstructive surgery to move rectum if I have seton removed. So I'm like you Dave...in for the long haul. I hate it but really it only hurts occasionally and I can handle it.
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Maxwell, I'm glad the drainage has stopped which is indeed one of the end points that was measured in clinical trials of Remicade (ie. 50% reduction in drainage). Though I am confused as to why the setons can't be removed if drainage has stopped. Perhaps it has something to do with the fistula tracts? It seems that there are so many variables that impact each of our individual scenarios. I met with my GI this week & was advised the status of my fistulas-setons would be assessed with an MRI in approximately a 6 month period prior to starting to withdraw any setons. Did you have an MRI that assessed the status of your fistula tracts?
 
I've never had an MRI. From what I understand the fistula tracks into the anal sphincter muscle. The cr surgeon said as long as the seton is in the track can't completely heal and if he removes it I can expect another abscess. Maybe that's because I had one before and the fistula was plugged and drain removed but it only tracked in a different direction causing another abscess. GI seemed very hopeful that Remicadee would handle things and he hasn't given up but did say it's a difficult thing to heal. Saw him today and with the exception of the fact that I still have the drain he seemed very happy with the rest of my progress. Labs are better than ever. No pain, drainage, or even multiple stools. Of course he doesn't get to live with a suture hanging out if his butt lol! I will keep at it for now but at some point I think I will be making them remove it and see what happens. But for now I'm dealing with it.
 
Hi there, I am on Remicade but I am posting in this group because I didn't get a reply in the TTC group, so if anyone has any thoughts that would be fab. I am 41 & my husband & I conceived our first child easily back in 2008, despite the fact that I'd had Crohn's related surgery in 2006, but at that time the Crohn's was undiagnosed. However, after problems through 2011 & 2012 and going onto Remicade since October 2012, my husband & I are struggling to conceive. We've been trying since May 2013 & have had all the tests: sperm, bloods, hysterosalpingogram & ultrasound & everything is ok which is hopeful. It's just sitting in the 'unexplained fertility' folder though! Our only other option is IVF. My concerns are this: Remicade suppresses the immune system & there are suggestions that taking it makes you weaker to fight anything & I mean anything that affects health. Therefore, do I want more meds in my system from IVF bearing in mind the risks that come with IVF drugs & the chances of Remicade possibly making me weaker to those risks if that makes sense? Any advice?....one nervous lady here! : )
 
I was diagnosed with Crohn's disease in 2011. I was a sophomore in college. I am now 22 years old and have had cdiff 4 times in the last 16 months. If I'm not battling the cdiff I am battling my Crohn's disease. I was forced to take a medical withdrawal from college when my disease was not under control. The reason I have joined this website though is because I would love to find other people who are battling both cdiff and Crohn's. Yesterday I went for my 7th Remicade treatment. At about an hour in I started sweating, then wheezing. The next thing I knew I stopped breathing, my throat shut, my entire body turned blood red and my blood pressure a plummeted. The nurse yelled "code blue and were losing her" I have never had such a traumatic and deathly experience before in my entire life. I thought I was going to die. Luckily they found someone who could help me and the ambulance arrived and I'm okay. Sometimes I feel there is just no hope for me because I can never catch a break. If I'm not battling my worst episode of cdiff im about to die from my Crohn's treatment. Has anyone had a reaction like this after 7 infusions?
 
Maxwelljax said:
I've never had an MRI. From what I understand the fistula tracks into the anal sphincter muscle. The cr surgeon said as long as the seton is in the track can't completely heal and if he removes it I can expect another abscess. Maybe that's because I had one before and the fistula was plugged and drain removed but it only tracked in a different direction causing another abscess. GI seemed very hopeful that Remicadee would handle things and he hasn't given up but did say it's a difficult thing to heal. Saw him today and with the exception of the fact that I still have the drain he seemed very happy with the rest of my progress. Labs are better than ever. No pain, drainage, or even multiple stools. Of course he doesn't get to live with a suture hanging out if his butt lol! I will keep at it for now but at some point I think I will be making them remove it and see what happens. But for now I'm dealing with it.
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ThanksMaxwelljax! Really appreciate it when people share their Fistula Experiences. I have found very limited information resources on perianal fistulas & I find Forum Members sharing really helps! There are several of you here who often support the majority of questions. I really appreciate the contributions.
 
To Robertsba92
have not had any reaction except that I cannot sleep due to a steriod they give me before the infusion. Are they giving you benedryl before you get the infusion? You should be given meds first I usually get tylenol, claritin and some kind of steriod before I start mine. Good luck to you!
 
Is anybody else starting to get worried about measles outbreaks and meningitis outbreaks? I am on Remicade and Imuran and am starting to wonder if this should be a concern. There have been two recent deaths and two diagnosis in NS from and of Meningitis.
 
JoFowler said:
Is anybody else starting to get worried about measles outbreaks and meningitis outbreaks? I am on Remicade and Imuran and am starting to wonder if this should be a concern. There have been two recent deaths and two diagnosis in NS from and of Meningitis.
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HiJO, The thought certainly crossed my mind with the Canadian outbreaks in the news. I just try to avoid dwelling on too much or I'd have myself locked in my home : )
 
Yes, I agree that is the best approach as well. Seems as though we have a lot to block out these days, when you also think of what was meant to happen in HRM today! Can't live in a bubble haha Have a great weekend :)
 
I have an appt tomorrow to discuss going on remicade. A little back ground, I have had Crohn's since I was 17 and am now 42. When I was 30 I had my ascending colon and some small bowel removed, they were able to get all of the disease. Prior to surgery I was on all the medications like asacol, pentasa, steroids, etc, biologic s were not around yet and nothing ever worked. After surgery I have had no problem or moderate problems with my Crohn's for about 10 years. Now my Crohn's is back pretty severe and I am back to misery. Instead of going on all the medications that have never worked i asked about remicade. My son was diagnosed at 12 and they tried all of the same medications steroids pentasa etc. They put him on remicade at 14 and he is now 16 and in complete remission, so i have seen how great it has worked for him.
I heard of new medications that are out there, my main question is if remicade is the way to go, or are there better medications out there?
 
Good luck mightymocha. My hubby was diagnosed over 20 years ago and he was in the same boat standard treatmeant - Pentasa/Asacol and steriods. He started on azathioprine/Imuran a little over 10 years ago and so far so good but remicade will be our first choice if we have to switch as our 15 1/2 year old son diagnosed at 10 years old started remicade a little over a year ago and the difference has been amazing.
 
Jmrogers4 said:
Good luck mightymocha. My hubby was diagnosed over 20 years ago and he was in the same boat standard treatmeant - Pentasa/Asacol and steriods. He started on azathioprine/Imuran a little over 10 years ago and so far so good but remicade will be our first choice if we have to switch as our 15 1/2 year old son diagnosed at 10 years old started remicade a little over a year ago and the difference has been amazing.
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I'm glad your son is doing better. It was so upsetting finding out my son had crohn's, since i watched first hand how it could be. My older sister was also diagnosed at 14 and she has had over 8 surgeries and dozens of hospital stays. I decided on remicade for my son because I saw how nothing worked for us. It has been a miracle for him, he has been in remission for almost 2 years. He went from a miserable little kid to a perfectly health kid who has grown to 6' 2' 220 pounds.
 
JoFowler said:
Is anybody else starting to get worried about measles outbreaks and meningitis outbreaks? I am on Remicade and Imuran and am starting to wonder if this should be a concern. There have been two recent deaths and two diagnosis in NS from and of Meningitis.
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I work with children and I was known to catch every little thing they had before I was ever diagnosed with Crohn's Disease. Since being on Remicade as well as another immune suppressing medication I act a bit more diligently when the kids are sick in terms of washing my hands and such. The girl on the immune suppressing meds hasn't come down with anything significant, minus a little cold, while co-workers around me are catching stomach bugs, strep, the flu, etc. I've been exposed to a lot the last few months and I've been very lucky. :)

Correct me if I am wrong, but isn't Meningitis likely to spread among college students, due to behaviors (sharing drinks, kissing random people, etc). I know those vaccines were required when I went away to college back in the day.
 
Meningitis is a concern in college, but anyone who is concerned about it should be able to get a vaccine from their doctor, unless it is a live virus vaccine. I always get my annual flu shot. There is also a measles (MMR) vaccine for which boosters are available for adults. I am on Remicade and don't get colds/flu any more than usual, but I do wash my hands a lot and try to stay away from sick people at work. I do have a strange eczema type rash that just won't clear up since being on Remicade, but it's better than having diarrhea all day.
 
Meningitis vaccine is not a live virus so you should be okay receiving that one. My son has received it in the last couple of years. MMR is a live virus so you would not be able to receive that vaccine on remicade.
 
My son was diagnosed last year, first with JRA with severe pain in his legs and hips. Then the Crohns symptoms started which landed him in hospital twice and a few ER visits. On his second hospital stay we decided to start Remicade.
He just had his 4th infusion in February and is doing great on them, he saw his JRA doc a week after his 2nd loading dose and she couldn't believe how the remicade was helping his mobility.
He is a junior in high school and missed so much school last year but hasn't missed any since he started the infusions.
 
Alley2231 said:
I work with children and I was known to catch every little thing they had before I was ever diagnosed with Crohn's Disease. Since being on Remicade as well as another immune suppressing medication I act a bit more diligently when the kids are sick in terms of washing my hands and such. The girl on the immune suppressing meds hasn't come down with anything significant, minus a little cold, while co-workers around me are catching stomach bugs, strep, the flu, etc. I've been exposed to a lot the last few months and I've been very lucky. :)

Correct me if I am wrong, but isn't Meningitis likely to spread among college students, due to behaviors (sharing drinks, kissing random people, etc). I know those vaccines were required when I went away to college back in the day.
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I am glad to hear you are keeping well! I have found the same thing (knock on wood) aside from a sinus infection - no colds or anything and I have been taking Remicade for just over two years. My nurse said it's because I am now healthier because of taking care of disease(and better care of myself since being diagnosed!) and that I am a good hand washer haha I guess she times me when I go to the washroom at the clinic???

As for meningitis - I don't really know, but I don't practice those behaviors so I will not worry haha
 
I have been on Remicade since 2001 and it has saved my life. I have not been hospitalized since then. I have had two bowel resections prior to that date. Since then, I have been in virtual remission with only an occasional cramp right before its time for my next infusion. I get infused every 8 weeks. It's a life saver. Highly recommend it.
 
Tons of remicade infusions and been fine but now I got a rash. Does this mean I'm developing antibodies? I sincerely hope not. I don't even take a steroid for the infusion.
 
nogutsnoglory said:
Tons of remicade infusions and been fine but now I got a rash. Does this mean I'm developing antibodies? I sincerely hope not. I don't even take a steroid for the infusion.
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There's a blood work test that can be done to determine if your body is producing antibodies. It's normally done within 72 hours before your infusion so they can also tell what the remicade levels are, as well. Maybe just give your doc a call and see if that's an option for you to get done.
 
nogutsnoglory said:
Tons of remicade infusions and been fine but now I got a rash. Does this mean I'm developing antibodies? I sincerely hope not. I don't even take a steroid for the infusion.
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Hey there! Nogutsnoglory - it does not indicate that you are building antibodies against the remicade. I was so fortunate to have the infusions for over a year. But to be safe, for me, at double the dose, they gave me Liquid Benadryl, every time I got the infusion. After 6 mos, they said, "Just take a Claritin before you come in and let's see how you feel." Well!! HA! (Still double the dose) AS the infusion is started, you could actually see the rash as the infusion is going in, the rash is growing, and it was the itchiest thing ever!! so...I guffawed, and screamed! lol and they stopped the infusion, and asked me what I wanted to do. I please, please give me the Benadryl, and when they thought it was good to start the infusion, start it. I was no way, giving up on my Remi. :) I did however, like a year later, develop the Full 100% Antibodies, and my Prometheus was taken moments after my remicade infusion was complete.

The good news is, I am fine. I am on no meds, I just have a tad of Lupus symptoms, however, I don't have Lupus. These symptoms can go on for 6 - 18mos, after the last infusion. I'm okay with that. And wow, I had my last infusion in August. I did drop 15 pounds just like that in January, 6 mos, after I stopped.

So...ask for benedryl and see if that helps. Or maybe all you will need is claritin. Let us know how it works out!
 
I get the max dose of Benadryl intravenously before my Remicadee infusion, as well. That could be an option for you to inquire on.
 
HangryGinger said:
It's worth a shot to ask, I guess. Especially if the rash is a recent development.
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...and I think you should still ask about another Prometheus test. BTW, you can cal them, and they will reduce the rate considerably. The thing is -- you never know. I know for a fact, if I didn't use the benedryl, I would never have been able to be on the remicade as long as I was.
 
I just had my 4th infusion this week. I had to take 50 mg of Benedryl beforehand because during my last infusion I had a bit of an allergic reaction with my throat closing and got really dizzy for a few minutes. No problems this time although it was hard to read my book because i was so sleepy.

Question: I started to get crohn's and spondyloarthopathy flare up at about 6.5 weeks after infusion #3. I had infusion #4 at just over 7 weeks. This was two days ago but I am still having the symptoms. has anyone else had this and how long did it take to recover once you had the next infusion?

My GI doc is going to shorten the interval to 6 weeks next time to make sure i don't flare in between infusions again.
 
I get and infusion every eight weeks and I notice that about a week and a half before my next one I start having symptoms. I haven't talked to my GI doctor yet. I think I just finished my sixth infusion.
 
Cat1653 said:
I get and infusion every eight weeks and I notice that about a week and a half before my next one I start having symptoms. I haven't talked to my GI doctor yet. I think I just finished my sixth infusion.
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Cat1653, how long does it take to get rid of the symptoms once you have the next infusion?
 
Hi I start my first remicade infusion an April 1rst. I had to find a new gastro because the one I had for 15 years moved. I'm not sure how confident I am with him, he seems to be rushed when I see him. The only test I have had done was a TB test. My son has been on remicade for 2 years and thinking back he the TB done and a promethius blood test. Should I have had that same blood test done also before I start, or am I being paranoid? He didn't even write the orders the girl up front did and she had to go ask him questions.
 
I had the TB test done before the Remicade treatments. I don't recall any other tests but they do blood work right before I get an infusion. I do think if you have any questions you should force this issue. You should never be rushed. Do you have e-mail access to your doctor? If so, you should email your concerns to him. I asked a lot of questions before I had this done.
 
mightymocha said:
Hi I start my first remicade infusion an April 1rst. I had to find a new gastro because the one I had for 15 years moved. I'm not sure how confident I am with him, he seems to be rushed when I see him. The only test I have had done was a TB test. My son has been on remicade for 2 years and thinking back he the TB done and a promethius blood test. Should I have had that same blood test done also before I start, or am I being paranoid? He didn't even write the orders the girl up front did and she had to go ask him questions.
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The Prometheus test is to see if you have built up antibodies to Remicade. You need to be having infusions and have it in your system to be measured. Since you will be having your first infusion,4-1, this is a test you do not need to worry about at this time.
 
Cat123- I get symptoms about a week out from my infusion too. I think I've read others post the same. My symptoms that surface are joint pain and abdominal and lower back pain, and sometimes my fistula drains and hurts again. They usually get better in a couple of days after infusion.
 
Yes it does seem to happen to others. I am afraid of getting the infusions to close together. I think I can tolerate a few days of discomfort. What are fistulas?
 
Mine was two weeks before the next infusion and now at five days past my infusion, the GI symptoms are almost gone again. MY CRP yesterday was elevated from just before the GI symptom started so was definitely a little flare. The arthritis never did get helped 100% but it seems to have improved now too so maybe the 4th infusion was the charm. Today I had cortisone injections in my SI joints which will help too.

i'm going to moving to 6 week intervals.
 
I've been on remicade since sept and it has been working awesome, until my last infusion. I get infusions every 8 weeks and this last time it wore off after 7 weeks. Now it has been almost 2 weeks since my last infusion and I still haven't seen the remicade fully kick in. I had to up my prednisone back to 40mg which I really hate doing.
 
Does anyone take fosamax for osteoporosis? I'm having a low grade fever, lot more burning joint pain, and I have taken my 4th week of 70mg fosamax . Thanks for information in advance! I take Remicade & 6mp also.
 
I started Remicade in 2000 at every 8 weeks, and over the years became asymptomatic, I eventually moved out to every 16 weeks. I backed down to 12 weeks last year, but have had clear colonoscopies for several years. Went to a new doctor (not that my regular gastro guy was not ok) who advised that I could try stopping the Remicade. New way of doctor thinking...Possible risks, return of active disease, with a need to move to another type of medicine, Humira and one other I did not know....I haven't decided yet what to do....
 
Before you stop the Remicade...remember just how tricky this foe can be. It just waits in hiding and then BOOM ! Just saying...wish you lots of luck whatever you decide to do.:dusty: It' s so hard to know what to do.
 
Had my first infusion yesterday, woke up in middle of the night and feel like I have a blockage, I am in sever pain. Could the infusion have done this to me?
 
I stopped Remicade a few months ago after being on it and in remission for 2 years. I mainly chose to go off it because it was hard to justify being on such an expensive drug when I felt fine (I am a recent college grad with some serious student loan debt). It was a bad choice for me. Less than 4 months later I am flaring as bad as I was when I was diagnosed. I am not saying that will happen to you PennyCFO, but if you do go off remicade, perhaps try moving down to a lower tier of drug before stopping all meds entirely. Good luck!
 
PennyCFO, I had the same experience as Sassycat. After being on Remicade a while and feeling fine, I thought I could justify stopping the medication. It didn't take long before I realized it was a mistake. The symptoms came back within just a few months, and even worse, after re-starting Remicade it never worked quite as well again.

If you're set on stopping Remicade, it might be worth tapering (increasing the intervals between your infusions) instead of quitting abruptly. As always, consult with your doctor before making any decisions based on internet advice.

Best to you friend.
 
Hi, I've got crohns,my doctor has recently suggested that I should go on Remicade as I keep having flare ups. I am currently on 100mg of Thioprine a day.One of the side effects of Thioprine is an increase of skin cancer. We have done some research on Remicade and it says there is an ever bigger chance of me gettting cancer.

My doctor says that crohns has nothing to do with diet, but we have done extensive research and found a diet called a flexitarian diet. It cuts out having meat, well it reduces the amount of meat intake to only having little bits each week -mainly focusing on fish, and not high amounts of red meat-. It also suggests to limit the about of dairy. This semi-vegetarian diet involves mainly fresh produce.

does anyone have any advice on this?
what are some side effects you have encountered?
my hair is already thinning from my medication and I do not want to get bald patches. Being a fourteen year old girl in the harsh high school life isn't exactly easy let alone having thin hair (or even having glad spots).

I would rather go on a diet than to be injected every couple of months…

What would you recommend, is Remicade worth it?

:sign0085:
Ebs
 
kromom1 said:
To everyone on Remicade, are you on other medications, too? My doc wants me to stay on Imuran with the Remicade. I will still be on pred when I start the Remi, too, but will hopefully be off of it for good a couple of weeks later, if the Remi works.

Lisa
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I'm on
remicade as well as lialda an dicyclomine.
M.C.
 
Yes..I am always on Azathioprine ( generic Imuran ) along with my Remicade ...and often am on prednisone as well. Try to think positively luv.... The Remi WILL work for you ! 😊
 
I've been diagnosed with severe UC since Aug, 2014. Been thru lialda, prednisone, mesalamine enemas, uceris ,Prevacid,humira and the only thing that helped had been when I am on prednisone. Tried numerous times to taper down but within a week I am out of remission. I started Remicadee and finished second infusion last week and am also now on 6-mp. I am down to 5 mg of prednisone and praying the 6 mp and Remicadee works as I am shoeing signs of adrenal insufficiency and muscles do bone loss from prednisone for 8 months. So far so good. I am on 50 mg of 6-mp and 5mg per kg of Remicadee. My safe foods are rice, bread and other white carb foods, my bad foods are popcorn and dairy. When I am in complete remission I can do Italian food. Have not been in remission longer than 0ne month at a time. Hoping Remicade works and I don't develop antibodies to it.
 
I have been on Remicade for close to 4 years now.


Like others have stated earlier, I have noticed that my symptoms come back about a week before my next infusion. Mainly in my ankles and I get pretty pale.


After my last infusion I have been extremely exhausted, pale looking and haven't been passing normal stools. I don't think this is a flare but I don't know what else it could be.
 
Hi, I started a thread but hadn't had any replies so I hope it's okay to ask here too. I had a scope yesterday and my double dose of Humira doesn't seem to be doing the trick. I've felt good but am a mess inside. I'm wondering if my dr will suggest a switch to Remicade. Has anyone had Humira not work & successfully switch to Remicade?
 
They put me on Remicade and 6 MP and it worked as I am off Prednisone for first time since August. Remicade is like Jet fuel vs regular gas is Humira. Ask to try it if MD does not tell you to. Only pain is once every 8 weeks you have to spend about 8 hrs getting infusion.
 
I spend about three hours at the infusion clinic total for my infusion now, still getting them every right weeks at 5mg/kg.....even though I have put on weight over the years, I've been able to keep the dosage the same. Who knows, after this bout of being sick with whatever I have, maybe I will actually lose some weight and let me fit in some more of my clothes again.
 
Sounds like the time varies quite a bit! Do you know what the switch process is? My next Humira is due the day before my 5/13 appt. I'd just as soon skip it if there's a chance of a switch.
 
Nancye50 said:
Sounds like the time varies quite a bit! Do you know what the switch process is? My next Humira is due the day before my 5/13 appt. I'd just as soon skip it if there's a chance of a switch.
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You need to be off the Humira for 2 weeks. The remicade is given over 3 hrs. You need to have a 1/2 hr IV of Benadryl usually before they start the Remicade to decrease possible side effects so your are up to 3.5 hrs. Once you show up at the IV infusion center it takes usually about 30 mins to get the drug from the pharmacy made into the correct IV dosage so there goes my 4 hrs. Not sure how others do it quicker.
 
DaveD said:
You need to be off the Humira for 2 weeks. The remicade is given over 3 hrs. You need to have a 1/2 hr IV of Benadryl usually before they start the Remicade to decrease possible side effects so your are up to 3.5 hrs. Once you show up at the IV infusion center it takes usually about 30 mins to get the drug from the pharmacy made into the correct IV dosage so there goes my 4 hrs. Not sure how others do it quicker.
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Pre-meds vary by patient and by doctor. For the first few years I did not get any pre-meds at all, not even Tylenol. It wasn't until I had a couple bouts of strep with some pretty nasty gutatte psoriasis added in did I start to get pre meds. Others do not get Benadryl, rather other types of antihistamines which may not cause drowsiness.

As for my 3 hours - it pretty much goes.....check in at 1230 (my usual appointment time) - hooked up to IV and pre-meds in by about 100p, then the remicade starts....that is usually done right about 330 and I'm unhooked and out of there. No waiting around afterward for me.

But, remember I've been doing this for 10 years now....so it is old hat. I've been around longer than the nurses there!
 
I did Claritin (oral) for my induction doses then nothing pre med wise. My Remicade is shipped from a specialty pharmacy directly to my infusion clinic so no worries on waiting for it. I had to wait around for an hour after my first 3 doses, now I just leave when I am done. About 2.5-3 hours total depending. I try to get the first appointment of the day so my nurse isn't tied up with other patients and can start my IV right away (I have sucky veins and we end up needing to hot pack them frequently, adding time).
 
I call my weight in an hour before my infusion and they are ready for me when I get there.My last one was 2.5 hours from sit down to leave.
 
Lisa said:
Pre-meds vary by patient and by doctor. For the first few years I did not get any pre-meds at all, not even Tylenol. It wasn't until I had a couple bouts of strep with some pretty nasty gutatte psoriasis added in did I start to get pre meds. Others do not get Benadryl, rather other types of antihistamines which may not cause drowsiness.

As for my 3 hours - it pretty much goes.....check in at 1230 (my usual appointment time) - hooked up to IV and pre-meds in by about 100p, then the remicade starts....that is usually done right about 330 and I'm unhooked and out of there. No waiting around afterward for me.

But, remember I've been doing this for 10 years now....so it is old hat. I've been around longer than the nurses there!
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That's amazing that it still holds strong after all this time. I know it poops out for most after a few infusions or a year.
 
Nancye50 said:
Benadryl, huh? So I would have to plan on napping instead of reading!
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I've been on remicade sinse November. I've never been in the IV room any more then 3 hrd. I'm asked if I want a TV or no TV. I choose not to. Then I'm given Tylenol and benadryl pills. A IV is started my rem shows it starts off slow 1 of 6 setting the higher the number the quicker it pumps in.

I own my own plumbing business so I do paper work or go on my smartphone. To pass the time.

Funny thing is I'm mater plumber and I can't fix my own plumbing. Lmao
 
This may bring a smile to a face or two. My first infusion was last July. I was answering all the first time questions while being hooked up and I was a bit nervous. Questions done,all hooked up and I start to read my book and I hear my name called. Hmmm,yeah this is Dave I reply. It was a cousin of mine in for chemo relaxing after a session. He heard me answering the questions,we were the only two in there. The hospital I go to,I have since learned,has many infusion patients. So to be the only two there at the time and related was interesting. I'm thankful to say my cousin and I chuckle about it to this day.
 
Lisa said:
Pre-meds vary by patient and by doctor. For the first few years I did not get any pre-meds at all, not even Tylenol. It wasn't until I had a couple bouts of strep with some pretty nasty gutatte psoriasis added in did I start to get pre meds. Others do not get Benadryl, rather other types of antihistamines which may not cause drowsiness.

As for my 3 hours - it pretty much goes.....check in at 1230 (my usual appointment time) - hooked up to IV and pre-meds in by about 100p, then the remicade starts....that is usually done right about 330 and I'm unhooked and out of there. No waiting around afterward for me.

But, remember I've been doing this for 10 years now....so it is old hat. I've been around longer than the nurses there!
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Lisa what is your dose of remicade I started off at 600mg every 8 wks. Just had it bumped up to 800mg to early to tell if it will work. I keep getting more abscess. I have 3 setonts, I told them if they give me 3 more I'd have 6 string guitar. I wound not wish that on no one. You have a sense of humor or this sickness will win.
 
I just switched from Humara to Remicade. For the past 2 weeks I have had horrible stomach pain. Has anyone else had this? I am on meds. PLease advise.
 
Any runners here?

Last year in May, I started running for the first time ever. I hate running but I saw my husband losing so much weight. After a month of running I started showing symptoms of crohns. Went through tests, diagnosed, started treatment. I had to stop running because my diagnosis was moderate to severe.

I've been on remicade a year and a half now and am in remission. Started running again a few weeks ago and I'm getting awful pain in my knees. Seems like runners knee, very painful under my knee cap. But I've not had an issue before and I'm wondering if it could be joint pain from remicade. Early on in my treatment I suffered terrible shoulder pain.

Going to call my doc but I was interested to see if anyone here has had similar issues since starting remicade.
 
Kevinsplumbing said:
Lisa what is your dose of remicade I started off at 600mg every 8 wks. Just had it bumped up to 800mg to early to tell if it will work. I keep getting more abscess. I have 3 setonts, I told them if they give me 3 more I'd have 6 string guitar. I wound not wish that on no one. You have a sense of humor or this sickness will win.
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I'm at 5mg/kg, every 8 weeks. I have the option of going up in dosage due to my weight, but as long as things are good I'm going to stay at the current dosage.
 
Hi folks new to the forum.

I was recently in hospital with a flare. I was given IV steroids for 5 days which seemed to do the trick. Unfortunately, when they converted me to the oral steroids my CRP went back up again so we made the decision to add in Infliximab. I had the infusion and (not sure if it was just in my head) I started feeling better during the IV. Within about 24 hours the bleeding had stopped and within about 72 hours my stools were almost back to normal. Been out the hospital for a week now and things have continued to improve. My next infusion of Infliximab is due on Tuesday.

At the moment I am 'triple immune suppressed' as the doctor put it, I am on Infliximab, pred and 6MP but I am feeling a lot better than I was. My first aim is to get off this pred and take things from there - 6 weeks to go!!

Thought my first act as a new member should be to join remicade club!
 
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Great news Jonny84 and welcome to the forum. My son had a similar response to remicade. It was awesome, he went into that first infusion lethargic, fatigued, and in pain and came out feeling great! I'm glad it is working so well for you!
 
Hey Clash - thanks for your reply.

So far so good. I'm really just taking it one step at a time. For me the first stage is to get of the pred and I am currently tapering 5mg a week so we will see how that goes.

My GI has informed me that I will be on combination therapy with the 6MP and Inflix for a year at which point we will do a scope and see how things are healing.

This is obviously not an ideal situation to be in, taking that level of medication but I do feel pretty positive. Its important to get things under control and heal as much as possible and in that sense things are going well. I feel better every day.
 
Jonny84 my son was on pred when he started remicade. He unfortunately didn't respond to pred at all except for the awful side effects so we wer glad to see it gone!.

After loading doses of remicade he could not make it 8 weeks without symptoms returning so we started a 6 eels schedule. We eventually had to up the dose and add methotrexate, another immune modulator similar to 6mp.

Remicade was awesome for my son, C. But it was unable to clear a small area of simmering inflammation and stricturing at his ileocecal valve so we opted for surgery.

Once we started back on remicade C had developed antibodies so we had to move to another biologic, Humira.

Both C and I lived the remicade and will tell anyone who'll listen what an awesome med it was. I hate he developed antibodies but he is doing well now on the humira and methotrexate so no complaints.

I hope each step only finds you closer and closer so a long stable remission!
 
Hi All,
Im new to your group. Had my first Remicade infusion two days ago and am already seeing improvement. I am also on methotrexate. Was on Humira for over a year and never really felt well. Had three flare ups that lasted months and have lost almost 15 pounds which is terrible for me because I usually am underweight anyway. Hoping to continue feeling some relief.
Look forward to hearing from members of the group.
 
Hi CMT

As I am sure you have seen from my posts, I also started Remicade recently. Like yourself, I saw immediate improvement. Within 72 hours my stools were pretty much back to normal.

I have my second infusion coming up on Tuesday. Glad to hear that you are feeling better and hope it continues - keep us up to date on your progress.
 
Hi Johnny thank you for your reply. Good wishes for your next round on Tuesday .
I Go back in about 4 weeks. this group is very helpful . Amazing how many different experiences we all have.
Have a nice weekend.
 
Had my second infusion today and it went well. No side effects at all. Went out for a meal for the first time in ages after and still feeling good.

Still on 30mg pred tapering 5mg a week so my appetite is crazy, eating too much rubbish at the moment so next step is to get back to a healthy diet and get off these steroids! Next Infliximab infusion in a few weeks.
 
Hi all,

I had my first infusion today at 8:00 AM. Everything went smoothly. The nurse very nice and made me feel comfortable and answered my questions. I was given two Tylenol and Benadryl intravenously which definitely knocked me out afterwards. I didn't experience any side effects only a fleeting head rush / flushed feeling when the drip started.

I have been pretty tired all day and experiencing a slight headache as a result of the medication wearing off. Not sure I could go straight to work after an infusion which I might have to do for my second. Contemplating taking the day off. I guess I will play it by ear.

I almost like the Remicade infusion experience more than my Cimzia injections. I liked knowing medical professionals were available and it didn't hurt at all. Not that Cimzia hurt, but I would be stressed out all day just thinking about those stupid injections. I hit a vein once and that kind of screwed with my head thereafter.

Anyways...I hope this works! I am running out of options!
 
Tabs said:
Hi all,

I had my first infusion today at 8:00 AM. Everything went smoothly. The nurse very nice and made me feel comfortable and answered my questions. I was given two Tylenol and Benadryl intravenously which definitely knocked me out afterwards. I didn't experience any side effects only a fleeting head rush / flushed feeling when the drip started.

I have been pretty tired all day and experiencing a slight headache as a result of the medication wearing off. Not sure I could go straight to work after an infusion which I might have to do for my second. Contemplating taking the day off. I guess I will play it by ear.

I almost like the Remicade infusion experience more than my Cimzia injections. I liked knowing medical professionals were available and it didn't hurt at all. Not that Cimzia hurt, but I would be stressed out all day just thinking about those stupid injections. I hit a vein once and that kind of screwed with my head thereafter.

Anyways...I hope this works! I am running out of options!
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I get my infusion at lunchtime on Fridays and take off the afternoon. I am usually tired until mid Saturday. I think it is due to the Benadryl premedication they give IV first.
 
Hello everyone. I've been a member but a little to shy to post. I was diagnosed with Crohn's about two years ago. (I'm 48). I'm on Remicade every 6 weeks. I could not maintain 8. Not sure Remicade is right for me. I've had flares. I have breakthrough symptoms that last a night. (Always at night, darn it!) I'm left tired the next day. I also take Lialda and Bentyl. I just wanted to say a few words and let you all know I'm here to complain and hopefully help answer other people's questions. Thank you. I hope you are having a good day. :thumleft:
 
My son is about to start Remicade (hopefully Monday if we get all the paperwork signed off). He was on Imuran for a few years but it stopped being effective and now he's in a raging flare - we didn't want to end up here, but this is where we are and we're hoping Remicade can help. Just joined this group to get advice on Remicade and learn more about what we can expect as we get started...

Everyone here is awesome and all the info and experiences you provide are invaluable.
 
Hi has anyone vomited blood after remacide - my 12 year old had his first infusion today but has started vomiting blood and wanted to know if you would still continue
 
You need to call his Dr or take him to ER ! I wouldn't think that was normal, vomiting blood is not anything to mess with. I've been on remicade almost 3 years .
 
Thank you! We did go straight back to hospital - they've given him omeprazole to take and continue with next infusion as planned hopefully it won't happen again - glad the remacide is working for 3 years
 

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