Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Is there ever a safe amount of time to be on Remicade?

Our daughter is doing so well right now, it has been almost a year since she started.

Other than complications, when do you decide to get off of Remicade?
No one probably can answer that, it is different for everyone. I guess my real question is, has anyone decided to stop Remicade because they felt better and their IBD stayed away?

I would appreciate your input
 
Even though I'm in remission I had no plans of stopping Remicade because I'd like to stay in remission. Stopping Remicade builds up antibodies to the medication making it so you may not be able to use it again in the future if it were needed.

I only stop medications if its clear that they are causing more harm than good.

I've heard of members on the forum who have been on Remicade for 7 years and up and the medication is still working for them.
 
Jennifer said:
I'm being taken off of Remicade. Was hoping to ride the Remicade train for as long as possible but I guess this is my stop. :p I'm seeing my Rheumy tomorrow morning to discuss my options.
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sorry to hear that Jennifer especially when it was working for you. :hug:
ju
 
Well hopefully Methotrexate will work well enough to keep me in remission. We decided to go that route instead of Cimzia because Cimzia will likely cause infections as well and I'd like to save that for an actual flare. Sucks when you've pretty much exhausted your medication options. New stuff is currently in the trial stage though. :D
 
Same here LMV, just had a colonsocopy and he result was severe inflammtion, so looks like Remicade isnt working for me. I think thats whay its important to look at your diet seriously and give your bowels as much help as possible. I think I will have to look at either the SCD or Paleo diet now :(
 
You see it so often on the forum, and I don't think doctors tell you the real deal.
I was diagnosed 5 years ago now and I was told it can be controlled with medication and diet makes no difference.
Its only really since starting remicade that I have seriously thought about the fact that I'm only 22, and only have maybe 2-3 medications left to try. I could have another 60 years of this yet!
 
Jennifer said:
Even though I'm in remission I had no plans of stopping Remicade because I'd like to stay in remission. Stopping Remicade builds up antibodies to the medication making it so you may not be able to use it again in the future if it were needed.

I only stop medications if its clear that they are causing more harm than good.

I've heard of members on the forum who have been on Remicade for 7 years and up and the medication is still working for them.
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I think you are right Jennifer about stopping the medication...actually, stopping any of the biologics will cause your body to build up antibodies.

Remicade is the 3rd (and I'm afraid last) biologic I can take. I have taken Humira and it worked great for about three years, then my rhuematologist switched me to Cimzia...this worked great for the arthritis, but over the course of that year, the Crohn's got much worse and my colonoscopy showed new blisters.

I have been on Remicade for just over a year, plus I am taking 6-MP which my gasteroenterologist recommended to help my body not build up antibodies to the Remicade.

Has anyone been reading or hearing about the promising clinical trials of Stelara? I'm curious to know :)

Thanks
 
Hope345 said:
Is there ever a safe amount of time to be on Remicade?

Our daughter is doing so well right now, it has been almost a year since she started.

Other than complications, when do you decide to get off of Remicade?
No one probably can answer that, it is different for everyone. I guess my real question is, has anyone decided to stop Remicade because they felt better and their IBD stayed away?

I would appreciate your input
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I've been on Remicade since the fall of 2005 - so far it is still working, little bumps here and there but nothing bad enough to make me stop taking it. I get 5 mg/kg every 8 weeks still.....no other meds.
 
My 9 year old has only been diagnosed for a little over a month. We have been doing weekly shots of methotrexate and prednisone pills daily. It worked for 2 weeks, now he is losing weight again and his joint pain is back. The Dr. wants to discuss Remicade...any advice on questions I should be asking the Dr? Or advice on how to deal with this new treatment?
 
@ Kristy5959 - How long has he been on Methotrexate? It can take 2-3 months to fully kick in.
 
Jennifer said:
@ Kristy5959 - How long has he been on Methotrexate? It can take 2-3 months to fully kick in.
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5 weeks. He is extremely moody and now has started being aggressive. He is only 9 and our only boy, so it's hard to know if this is "just being a boy" or a side effect. He is having hair loss too. He still has loose stool with blood in it at least 5 times a day. He has lost 3 lbs in the last week :(
 
Jennifer said:
Do they want to add Remicade on top of the Methotrexate?
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I am not sure. We have an appointment on Wednesday to discuss new treatment options and he just mentioned Remicade was one of them. I figured I would try to get as much info as I could about it before we met with him.
 
Kristy5959 said:
My 9 year old has only been diagnosed for a little over a month. We have been doing weekly shots of methotrexate and prednisone pills daily. It worked for 2 weeks, now he is losing weight again and his joint pain is back. The Dr. wants to discuss Remicade...any advice on questions I should be asking the Dr? Or advice on how to deal with this new treatment?
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ak no, poor wee man,
IMO I would stick to the current regime for a bit longer to see if the pred works for him because once he's on remicade he'll have to stay on it. what dosage of pred is he on. sometimes tapering slower can do the trick. this means going down by 5mg every 2/3/4 wks instead of every wk.
seems a shame he's heading for the biological so soon without exhausting all other routes but if it get him in remission and better then it would be worth it.
ju
 
Kristy5959 said:
I am not sure. We have an appointment on Wednesday to discuss new treatment options and he just mentioned Remicade was one of them. I figured I would try to get as much info as I could about it before we met with him.
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Kristy,
I know its only early days for yous, treatment wise, but what else have you tried. it the mex and pred the only thing you have tried.
remicade is a life saver but it can have dangerous side effects too. check out the treatment forum there's plenty of discussions going on right now about remicade, good and bad.
the only thing I can say is you cant knock it till you try it.
he will be well looked after whilst he is on remicade, if he chooses to go that route. ie- regular bloods to check for any changes. also during the infusion he'll be watched for reactions and they are well equipped to deal with any problems.
if you have any questions about remicade or any other treatment don't be afraid to ask.

ju
 
Holly ?!*# this stuff's expensive!

I had my first Remicade infusion almost 2 weeks ago, and asked my insurance what it might cost. The rep skirted around the issue and said she really couldn't say yet. So, I expected $1,000, maybe $2,000 since it was done at a hospital. Well, I saw the total today and it was $11,300!!

So I guess I'm headed for another $11,300 infusion in three days, followed by a month later. I have requested the Remistart paperwork, but this is ridiculous. It can't really cost that much for a nurse to give me an IV and bring me drinks for 3 hours.

Is $11,000 per infusion typical for anyone else taking this drug???
:ymad:
 
Heck, I don't even get drinks. It's the medication itself that is so expensive. Remistart should approve you and cover whatever your insurance doesn't. Good luck with it.
 
Mine was $4100.. per infusion but I am in Canada and covered by insurance.
Remistart is a good place to go.
Did you apply directly to Janssen? may be the fastest route.
Hope things go well for you.
Hugs and best wishes
Trysha
 
jeffp said:
Holly ?!*# this stuff's expensive!

I had my first Remicade infusion almost 2 weeks ago, and asked my insurance what it might cost. The rep skirted around the issue and said she really couldn't say yet. So, I expected $1,000, maybe $2,000 since it was done at a hospital. Well, I saw the total today and it was $11,300!!

So I guess I'm headed for another $11,300 infusion in three days, followed by a month later. I have requested the Remistart paperwork, but this is ridiculous. It can't really cost that much for a nurse to give me an IV and bring me drinks for 3 hours.

Is $11,000 per infusion typical for anyone else taking this drug???
:ymad:
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Yes, it is the same price here in Oregon. I have not heard of Remistart, so maybe we will look into that too. It would help with the deductible.
 
My son does his infusion at the GI's IV lab so ours is $4500.00. The infusions are generally less expensive at an offsite infusion lab compared to a hospital IV lab. Good luck with the Remicade, I hope it works quickly for you, jeffp.
 
Hi everyone!

I've been on Remicade for about a year and a half in combination with Purenithol and it keeps me mostly symptom free... I am struggling with the side effects, (constant colds/flus/sinus infections, skin problems, hives, psoriasis... Yadda yadda.) though, so I am considering looking at other treatment options.
 
It would be a shame to stop Avee , especially as it is keeping the symptoms away. Are you taking any vits to help boost your immune system. I take a vit D spray which seems to keep the worst colds ect away. I also juice which gives me lots of vit c , juicing is also really good for skin problems.

A quote from Jason Vale "The Juice Master"

"I know first hand the sheer power of the juice. I suffered from severe asthma, incredibly bad psoriasis, eczema, hay fever and one of the most common ailments to hit the UK population - being overweight. Yet by simply swapping my normal junk(ie) foods and drinks for a freshly extracted juice or two a day and by adding a touch of exercise to daily life, my mental and physical health improved beyond anything I had envisaged."
 
Avee said:
Hi everyone!

I've been on Remicade for about a year and a half in combination with Purenithol and it keeps me mostly symptom free... I am struggling with the side effects, (constant colds/flus/sinus infections, skin problems, hives, psoriasis... Yadda yadda.) though, so I am considering looking at other treatment options.
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You just said it is helping you... Don't be so quick to look for other treatments... It is difficult for most members to even get to the state you are in right now. Just be careful. If you are going to try something new, make sure to come back to Remicade if the flares come back. But what do you mean by other treatments? Like Holistic methods? Natural Vitamins? Eastern Medicine? There are only a few other treatments that replace Remicade but it is other types of immune-suppressant drugs. Anyways, keep up the remission. :]
 
hey all,
im 5 wks in and flaring again. its not serious just mucous and a little blood.
what do you think they'll do. im seeing my Gi next wk so im not gonna bother contacting him b4 then.
im seriously browned off.
ju
 
That treatment cost does sound rather excessive. From what I gather, the cost is about £450/$700 a vial (100mg) for the actual drug. So assuming 4 vials, should cost about £16,000/$25,000 (9 infusions) for the first year of treatment. $75,000 in fees for them to stick it in you is a complete rip off, considering it only takes a couple of hours.
 
Remicade should never be prescribed without first having a thorough discussion on the costs and side effects. THOROUGH! My GI did not discuss the cost and I nearly fainted when I found out. I was in tears when I called his office to say I could not afford it. ONly then did they tell me about the Remistart program.
 
sickinlk said:
hey all,
im 5 wks in and flaring again. its not serious just mucous and a little blood.
what do you think they'll do. im seeing my Gi next wk so im not gonna bother contacting him b4 then.
im seriously browned off.
ju
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They could increase the dose, put you on every 6 weeks instead of 8 (dunno if you're already on the max dose or 6 weeks), or add another medication such as Methotrexate or steroids. Let us know how the appointment goes and keep us posted on how you're doing. :)
 
Jennifer said:
They could increase the dose, put you on every 6 weeks instead of 8 (dunno if you're already on the max dose or 6 weeks), or add another medication such as Methotrexate or steroids. Let us know how the appointment goes and keep us posted on how you're doing. :)
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thanks Jennifer,
methotrexate is out cuz of pancreatitis and im steroid resistant.
im usually so upbeat but this **** gets me down. ive been feeling so well for ages and feeling so full of energy and then it creeps back, reminding me that I have a chronic illness. booooooooooooooooo I say. I know the procedure well. just need some sympathy cuz im feeling sorry for myself.
:yfrown::yfrown:
you know how it is.
ju
 
Hi All!

I had my first infusion on Friday 4/19. No reaction during my session. YAY! I did get a little drowsy from the pre-meds but that was it. I felt pretty good afterward the whole thing took about 3 hrs.

I was a little worried about having to sit for 4 hrs. I have a lot of inflamed tissue in my rectum. I brought my trusty Boppy pillow to sit on and was fine. After treatment I hopped in my car without putting my pillow in the seat. I didn't even notice until later. I guess I was feeling pretty good down there. Got a bit tired later in the day. Crashed out in the evening for a long nap.

The next day was a bit weird. My skin ached around the trunk of my body, I was constipated, and had a low grade fever/sweats in the evening. My BM's are usually like clockwork in the morning. I finally produced a few pebbles late in the afternoon but not the main event. Seems like things are back on track this morning. I see more bloody mucus than I'd like though... I also tapered my Prednisone dosage on Friday so that could be the cause.

So far so good I guess.
 
From my experience with Remicade, I didn't get immediate relief. It took about 3 infusions for me to really start feeling better. I still get sleepy later in the day if I have had an infusion. For me, that achy feeling did subside and that low-grade flu fever as well. I have been on it for over a year, and I still have the side effects despite taking all the supplements out there. I usually get bladder and yeast infections more often, and the sinus infections too. I take a probiotic called Align for the gut, and I take another probiotic for the bladder/yeast infections by Bell supplements and I take 50,000 mg of Vitamin D a week...its still frustrating to get these infections, but if I take antibiotics for them, forget about feeling back to somewhat normal since they throw my entire system out of whack!

I am still pretty thankful that the Remicade is helping with the Crohn's and the arthritis that accompanies it.

Oh and I am on the RemiStart program...and its been a blessing!!! Feel free to ask me any questions about RemiStart, I believe your GI doctor has to get the paperwork and the process rolling, then once you have it, you just having to re-apply for it the next year.
 
hi, so I saw my Gi doc today and he wants to add 6mp into the mix even though ive had pancreatitis in the past. he says that ill know pretty quickly if it doesn't agree with me as i'll have pain. I do not want to go there again. it took me months to improve last year. however i'll never know unless I try it. it might be the drug I need.
so im busy googling now but wanted to ask has any of you guys been on both remicade and 6mp?
ju
 
Clash said:
My son does his infusion at the GI's IV lab so ours is $4500.00. The infusions are generally less expensive at an offsite infusion lab compared to a hospital IV lab. Good luck with the Remicade, I hope it works quickly for you, jeffp.
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Mine was at an offsite GI lab and the insurance company was billed $11,000-$18,000.
 
sickinlk said:
hi, so I saw my Gi doc today and he wants to add 6mp into the mix even though ive had pancreatitis in the past. he says that ill know pretty quickly if it doesn't agree with me as i'll have pain. I do not want to go there again. it took me months to improve last year. however i'll never know unless I try it. it might be the drug I need.
so im busy googling now but wanted to ask has any of you guys been on both remicade and 6mp?
ju
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I was not on both at the same time, but I do wish you the best of luck. Pancreatitis sucks!
 
Hey I'm feeling pretty good today! :ybiggrin:

I think the fever might've been related to my Prednisone taper. The body aches went away after 48 hrs. Still figuring out the constipation issue. Was miserable 3 of the last 4 days felt stopped up and the rectal inflammation/swelling was ramping up again. Yesterday I emailed my GI, to adjust my taper schedule. She suggested Miralax. I took a chance and used some laxative tabs I had already. I didn't want to chance going out and having an issue. The laxative did the trick. I'll pick up some Miralax today so I can have it on hand.

Now I'm trying to reintroduce some soft fruit and veggies into my diet. I noticed that my output has changed in appearance since my infusion. Maybe my bowels are functioning more "normally" and my low fiber diet is to blame.
 
Ugh came in for my infusion today. Everything was fine until about 15 minutes in when I got the itchy feeling again. No big deal until the nurse came around and saw a hive popping up on my tummy. Infusion got stopped dr called another benedryl given and Remicade started again this time muuch slower than before. Ive been in the hospital since 9am it is now 2:05 pm and im still getting the infusion itll probably be anouther hour before I get out of here. 1/2 hr for Remicade 1/2 hr for saline...ugh.

Light at the end of the tunnel...ill be feeling better by tomorrow for my sons feild trip
 
I have had nothing but a great experience so far with Remicade.I first started remi in September, so .It's been a little over 7 months now, and I am doing so much better with this med than I was with Humira.At least with the remicade, I can tell when the med starts/stops working.I feel it wearing off just about a week before the next infusion is due.With Humira I couldn't tell anything at all.I think the Humira might have helped a little with the arthritis, but didn't do anything for my crohns.I absolutely dreaded/hated doing those weekly injections.It's so much easier to go to my hospital for an infusion every 8 weeks.Everyone at the hospital has been great.Even the food is good.I have my own little private room with a TV, and can order room service any time I'd like. :) It's been such a better experience compared to humira, and the remi is actually helping!
xoxo
 
Hi all,
I started last fri and the next day I started feeling better. By Sunday my internal bleeding stopped and my fistulas were starting to heal. By wen I was back to normal,going to work being my old self. By Friday I noticed my stomach was starting to get that old feeling again and today I'm so tired that I have no energy for anything. Is this normal for a week after my first infusion? My next one is next fri and it seems like its wearing off fast. If this is normal then I can see if they can get me in earlier. I just don't want to go back to being couch bound.
Thanks
 
Hi Rickgren.
Thats great you noticed a difference so quickly. They might have given you a smaller dose for your first go.

Just wanted to update everyone that I had my third infusion today :) All went ok again. So now I have my first 8 week wait. I'm feeling ok atm so I hope it lasts the 8 weeks. Especially since I am working now.

On my way out I walked by my GI. I told him where I had just been and he checked it went ok. That was nice of him.

Now that I have had the first three and I'm still feeling well, I want it to work even more than I did before. All I ask is for a few healthy years without a flare, I want to forget I have crohn's for a while. (Apart from this place of course :p )
 
Hi,
I'm currently on Remicade and taking 6-MP as well and have been for just over a year. I'm not sure if I am having any problems because I take so many other meds, lol...but so far so good.

My GI doctor told me that taking the 6-MP helps my body not to build up antibodies to the Remicade (as I did with Humira).

Good luck!
J



sickinlk said:
hi, so I saw my Gi doc today and he wants to add 6mp into the mix even though ive had pancreatitis in the past. he says that ill know pretty quickly if it doesn't agree with me as i'll have pain. I do not want to go there again. it took me months to improve last year. however i'll never know unless I try it. it might be the drug I need.
so im busy googling now but wanted to ask has any of you guys been on both remicade and 6mp?
ju
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Uneventful (good) infusion today. Not finding that I am as tired afterwards as I was with the first two. Overall feeling really good.
 
AlliRuns I also had my 4th infusion last week and not feeling as tired with the others. I was surprised I figured I would be sleepy and all but nope. Been on vacation and still feeling good.
 
elfgibson said:
AlliRuns I also had my 4th infusion last week and not feeling as tired with the others. I was surprised I figured I would be sleepy and all but nope. Been on vacation and still feeling good.
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That's excellent! Glad it went well :) I don't think I will give up my post- nap/rest if I start not feeling tired after infusion hahahaha
 
Has anyone had a problem getting their Remicade if you have a chest cold? I am scheduled for my infusion next Wednesday. The only thing I am taking for it is Mucinex-D, no antibiotics.

Thanks!
 
cntrygrl504 said:
Has anyone had a problem getting their Remicade if you have a chest cold? I am scheduled for my infusion next Wednesday. The only thing I am taking for it is Mucinex-D, no antibiotics.

Thanks!
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it hard to know. if the cold has been around for a while and there is no green goo/mucous then they might go ahead. OTOH if theres is even an inkling of an infection they will postpone it.
ju
 
cntrygrl504 said:
Has anyone had a problem getting their Remicade if you have a chest cold? I am scheduled for my infusion next Wednesday. The only thing I am taking for it is Mucinex-D, no antibiotics.

Thanks!
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Recently my infusion center has begun asking me before each visit if I have any infections or illnesses, and if so they will turn me away. But for the last several years before now, they've never brought it up. They've also started giving me the Remicade information packet at every visit now (warnings, side effects, etc), which never used to happen.
 
Dave07 said:
Recently my infusion center has begun asking me before each visit if I have any infections or illnesses, and if so they will turn me away. But for the last several years before now, they've never brought it up. They've also started giving me the Remicade information packet at every visit now (warnings, side effects, etc), which never used to happen.
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I get asked asked well, twice. Once when they call to confirm my appt the week before and a second time when I get there.
 
That don't ask me any more, haven't for a while. As long as my lungs are clear and don't have a fever I have not had any problems getting my infusion.
 
Thanks guys! This morning I woke up and finally feel like I am on the upswing and kicking this. I did call the drs office and they said they didn't think it would be a problem as long as I wasn't running a fever.
 
Hi all!

I guess I can now officially join the club since I will be starting remicade in 2 weeks. I want to thank everyone who has posted messages here, because it helped me to finally make a decision to start it. I know there are many possible negatives, but it was good to hear some positives. I'm a bit anxious of course to see if it works for me, but I figure I'll never know until I try!

I've had Crohn's for 16 years and tried the bottom up approach because I am reluctant to take any meds, even though I've learned over the years to just take the meds and stop whining about it. Also, I caught the Crohn's early (runs in family-so I knew pretty much what it was from the start) with a slow onset and have never had a truly horrible time with it as many others have (meaning no surgeries), so I never had a reason before to try the major league meds.

But here I am, with almost a constant flare over the last 2 years, and ready to try anything to get back to what's normal for me (which is never "normal" but much more manageable).

So I'm ready for this, I feel pretty prepared after reading what the procedure is like, and I'm always ready for a good nap or at least a good reading session. My doc's office has a regimen of meds to take leading up to the day so I'm hoping no side effects.
 
Our son Alec (13 yrs old, AKA Obi-Won Crohnobi) is joing the remicade club on Monday. We pray this will be the trick to get him off prednisone and into remission. He is really looking forward to this with such a positive mindset ... and he hates needles! Tells you how much more he hates his symptoms.
 
I am new to this whole forum thing but I have a remicade infusion on fri and I have had them for about 6 yrs now every 7-8 weeks and I have a port where my meds are given. Does this mean I can join this group as well? :smile:
 
Marybrown said:
I am new to this whole forum thing but I have a remicade infusion on fri and I have had them for about 6 yrs now every 7-8 weeks and I have a port where my meds are given. Does this mean I can join this group as well? :smile:
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of course you can, some1 with your experience is an invaluable source of info. welcome to the group.
ju
 
I was put on a course for a year, unfortunately my Doc has changed so I will be going for the review with a new one.
I am feeling so much better than this time last year when I started, but lately I have had some of the symptoms again that I had before my big flare.
I hate to think I will get sick as soon as they stop my infusions.
Has anyone else received just a years worth of treatment and then stopped?
 
beach bum ,
I wish,
I thought if you are on it and successful you stay on it.
did they mention putting you on Imuran or 6-mp to limit reactions if you return to remicade. ive read that you build up antibodies to it while of it and it can cause an allergic type reaction when you go back on and 6-mp stops that from happening.
ju
 
I guess I will need to have a talk with this new Doc, the first one said to just have it for a year and then let the Aza take over after that. But if the remi is keeping the flares at bay I would rather stay on it obviously :/
 
Alec had infustion #1 on Monday ... no problems ... tapering off Pred immediatly and hoping he doesnt have any symptoms before his next infusion. knock wood.
 
Infusion this morning. I can't keep track of how many I've had. It's been a lot and I know it helps keep me feeling pretty good!
 
Hi hope someone can advise me. My son of 15 recently started on Remi. He had his first full infusion almost 2 weeks ago and although his Crohn's symptoms have gone, he doesn't feel that great. He is pale, not that energetic, eczema is flaring. After the first 2 loading doses he actually felt and looked fantastic. Any ideas?
 
Beach bum - as I understand it, in the UK, if you have no symptoms anymore after being on Remicade for a year then they will stop it. Lots of people are ok after stopping it which is why they do it, mainly due to cost and also uncertainty of how safe it is long term. However if you still have some symptoms they will carry it on indefinitely.
 
Ah I see, thanks for that.
I don't have any major symptoms at the moment, but lately I have been experiencing some of the things I had before I became ill, I din't know what they were then but I guess I am more aware now and know it could be something :/
 
Hi, so I have tried imuran, 6-mp and both have messed up my liver so now once my liver enzymes go back down my GI wants to start remicade. I'm kind of nervous because I have not had very good luck with any drug I have tried for my Crohn's. what kind of side effects are to be expected? And what do you end up feeling like especially after the first dose?
 
Hi i start Remicade on Friday never had it b4. I dont really know what to expect. Like many of you no drugs have helped me either. I am positive that this will put me in remission though. I am just a bit nervous that I have not been checked for infections as my consultant wants me on it straight away. Fingers crossed.

Alison
 
alisonwilkinson said:
Hi i start Remicade on Friday never had it b4. I dont really know what to expect. Like many of you no drugs have helped me either. I am positive that this will put me in remission though. I am just a bit nervous that I have not been checked for infections as my consultant wants me on it straight away. Fingers crossed.

Alison
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your post made me cringe. I don't know about every1 else but I had a mantoux test for TB and had labs done before I started. I wonder whats the big panic. are you flaring badly?
ju
 
Hi I have had the mantoux test ages ago. I had bloodwork done last Tuesday. I was suppose to be starting Humira but 6mp caused my liver function to go all over the place. I have not been on any medication since February. I have lost 2 stone in weight since last July. Doctor worried about weight loss and not absorbing the food i am eating so said need Remicade asap. Doctor thinks remicade will work faster than Humira. IBD nurse said they usually check to see if you have any infections but want to get me started Friday. She will ring me on Thursday to check if I am aware of having any infection. Thanks for replying.

Alison
 
Blood work done about one week to one week and half before the infusion sounds pretty normal. That's how mine have been done so far anyway. It's hard but sometimes you just have to trust the docs, they know what they are doing.
 
oh that's better alison, I thought you meant that you hadn't had any screening done. your set to go ahead then. you would know if you had an infection of any sort so im sure you'll be fine. good luck. its no bug deal. just lay back and relax. can take 4 hours the 1st couple of times.
ju
 
Hi got back at 6pm. My appointment was at 12.30pm after checking urine blood pressure etc I finally got going at 13.30pm. It took 2 hours and had to stay for 2 hours. I will have to stay 2 hours every time I have an infusion at my hospital. My pre medication was hydrocoisone through iv and 2 paracetamol. I feel fine so far no reactions. Next infusion in 2 weeks. Thanks for reading.

Alison
 
Glad everything went well Alison. I'm usually in and out in 3 1/2 hours, and I take my own premeds at home just before I leave for the hospital. Been on Remi for a bit more than a year now, and was worried that it wasn't working, but a hike in the dosage fixed things and I think I'm ok again. Good luck with it all.
 
hi Alison and Judith.
I only had to stay for the 4 hrs the 1st few infusions. after that they increase the speed it goes into you once you've shown you can tolerate it. mine takes an hour going in and I have to stay for an hour after.
ju
 
Alec had his second infusion last Monday. He felt so good afterwards he decided to go to his baseball game straight from the hospital. He started at third base and then had to pitch 3 innings when the starting pitcher couldn't get through the second inning. We thought he would just DH but he told his coach he was fine ... needless to say, so far so good.
 
I had Remi on Feb 18, and again today, both times I had bad reactions, 4 hours after I started and currently having chest pains, shortness of breathe, and stomach cramping. I went to the ER the last time but am trying not to go this time, just took Benadryl and may take a vicodin for the pain.

I've been going for 10 yrs and try to stay close to the 8 week point but been swamped with work/life and now I'm another month past due. Is this the reason or is it time to ry something else, It has kept me out of the hospital despite a few ER visits.

See my GI in July.. I'm 44 have had Crohns since I was 12, no major surgeries.
 
melissaconstantine If the infusions were spaced that far apart there is a possibility that your body has built up antibodies which can create a reaction. Before Feb 18 were they spaced consistently?

There have been several studies that show episodic use of Remicade led to antibodies being created more often than consistent use, I believe.
 
I was really good about going every 8 weeks, I had one around Thanksgiving, then Feb 18 and then yesterday, I need to make time and go do it, and not let work or life get in the way!!! I will see my GI early July and see if we should try it one more time, I have it in my calendar in July when I should go again. I feel better today but some minor joint pain in my hip!! Now off to enjoy the day at a festival, need to get out and enjoy the weather. Thanks for all your thoughts!!
 
Hi i have been told that it will take 2 hours everytime i go. I asked before I started if I tolerated it would I be able to increase time infusion takes and was told no. I have infusions in the endoscopy department and there is a letter stating every infliximab infusion you have you must stay at least 2 hours after infusion. It states if you dont agree to this then they will refuse the infusion. So looks like for me I will be 4 hours everytime. I am noticing things getting better after just one infusion. I am not bothered about the time if its going to keep me well.

Alison
 
I've never heard of waiting 2 hrs after, I usually will stay 30min max and it depends on which nurse is taking care of me, I get it done at the hospital for the last 10yrs, have a good relationship with nurses. This time the Infusion went 3 hrs instead of 2, I was there 90min b4 waiting on iv therapy to get an iv in, my veins are horrible.. Then wait for meds to be made up..
 
alisonwilkinson said:
Hi i have been told that it will take 2 hours everytime i go. I asked before I started if I tolerated it would I be able to increase time infusion takes and was told no. I have infusions in the endoscopy department and there is a letter stating every infliximab infusion you have you must stay at least 2 hours after infusion. It states if you dont agree to this then they will refuse the infusion. So looks like for me I will be 4 hours everytime. I am noticing things getting better after just one infusion. I am not bothered about the time if its going to keep me well.

Alison
Click to expand...

lots of different centres/hospitals will have different protocols. yours are just being super careful
ju
 
well, less than two weeks since Alec's second infusion and he woke up nauseas and had 2 BM's already this morning. Also has bleeding from a rash on his bottom. He played baseball last night and felt so good, how does it go so bad so fast? So sad right now.
 
parentnj, it can take up to six or more infusions to see a full difference. I know it can be disconserting and deflating to see issues so soon after the Remicade infusion but I hope that his complete response will come with more infusions.

Even after the loading doses they may have to tweak the schedule or up the dose to get full efficacy from it. Hang in there.

C has never had nausea with his remicade treatments but a day or two after some infusions he would have loose bms for a day then all would reset and be normal til the next infusion. One of the other parents, MLP, said her son experienced this as well when he was on Remicade.

HUGS.
 
Alec's Crohn's symptoms usually start with nausea ... that is what is scary for us. We are waiting to hear back from Alec's doctor to see what he wants to do. I know he is on the lowest remicade dose and its only his second loading infusion so we need to have patience ... knowing its more than two weeks until his next dose doesnt make it any easier.
 
I know what you mean, once you make a difficult decision about the medications you then have the periods of worry about their efficacy. It is so much stress to watch your little one deal with all of the treatments and symptoms of the disease.

We have a fecal calprotectin coming up and I so want to see really good numbers, such a waiting game!
 
well I managed to last the 8 weeks without any real problems...I still have a few symptoms such as occasional blood and one mouth ulcer which still wont heal lol. Had my 4th infusion the other day, will be interesting to see what happens this time. The infusion before I didn't have any symptoms for 3 weeks after (except the ulcer), then it went a bit downhill after that.
 
I've been on remicade for a year now and it has been working great up until 2 infusions ago. I had a flare up towards the end of my cycle, then during this last cycle, I had a flare up in the middle of my cycle. Doc said he may increase the dosage or go in more frequently for infusions.
 
My Dr. did both Amy. Increased the dosage and now I'm going every 5 weeks instead of 6. So far so good, working much better. Good luck with it.
 
Hi i had a blip last Thursday thought I might be having a reaction to the remicade headaches,dizziness and my stool had gone from solid to watery. I rang IBD nurse and she said she would speak to the doctor could be a reaction. I put it down to a 24 hour bug I woke up on Friday fine. I told the nurse that I was fine when she called me on Friday but she said she will ring me on Monday and keep an eye on me b4 my next infusion on Friday. She said if i needed to be seen then they would see me b4 i go for my infusion. I dont think i need to be seen. I am feeliing good and long may it last.

Alison
 
Alec's little flare resolved itself ... he felt much better by late afternoon on Friday and was feeling really good this weekend. No idea what triggered it other than maybe too much Gatorade which he drinks to keeps his electrolytes up when playing baseball. fingers crossed it has passed.
 

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