Remicade Club Support Group

[Arkansas Crohny]

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

Your welcome, i haven't heard of anyone doing that after there infusion, but like several has said were not all alike. I wish him the best. I'm glad remicade has helped my crohns also. Thanks Arkansas Crohny

 

[nogutsnoglory]

Anyone get diarrhea for a few days after Remicade? I can be solid before my infusion and then I get diarrhea after for a few days till I stabilize again. It's so weird that s drug to help actually at first makes it worse.

 

[DaveD]

Anyone get diarrhea for a few days after Remicade? I can be solid before my infusion and then I get diarrhea after for a few days till I stabilize again. It's so weird that s drug to help actually at first makes it worse.

I say eat a normal diet and on schedule if you haven't and see how you do as i never have a change after my Remicade except being tired for 12 to 24 hrs or so but that is from the benadryl infusion they give me prior.

Also you could try eating a small amount of banana(as a pre-biotic) and some yogurt for breakfast and lunch and see if that helps. yogurt really has helped me when i utilize oats/banana as a pre-biotic supplement. I never knew this until i went on a GI tract immune seminar about 6 months ago. Good luck.

 

[Jonny84]

Is really common for people to be premeditated before infliximab infusion? I keep reading about it on here. I've not been given any medication prior to my first two infusions and so far I've not felt a single side effect, in fact I feel great.

 

[DaveD]

Is really common for people to be premeditated before infliximab infusion? I keep reading about it on here. I've not been given any medication prior to my first two infusions and so far I've not felt a single side effect, in fact I feel great.

They do so because some people can have a severe allergic reaction to mouse protein that Remicade is derived from. Much less common now that people are on 6-mp at same time. There were some horror stories nurses had described to me before benadryl premeds and people being on 6-mp , which acts to block our immune response somewhat.

 

[Mehita]

Is really common for people to be premeditated before infliximab infusion? I keep reading about it on here. I've not been given any medication prior to my first two infusions and so far I've not felt a single side effect, in fact I feel great.

My son has always been given Benedryl and Tylenol as pre-meds. I was told it was to prevent and/or lessen reactions and it's standard at our pediatric infusion center. Unfortunately, he's started to build antibodies so they've also added Solumedrol.

If you're feeling great, I wouldn't rock the boat, but I wouldn't be opposed to the idea some day either.

 

[dave13]

Is really common for people to be premeditated before infliximab infusion? I keep reading about it on here. I've not been given any medication prior to my first two infusions and so far I've not felt a single side effect, in fact I feel great.

I get Benedryl and Laratadine orally first. Once I'm hooked up they start with saline for a bit and then Remicade.

 

[Lil Trooper Ethan's mom]

My 22 month old had his first infusion yesterday. It seems as though he is actually more energetic than normal. I have read that most feel wiped out the next day. Anyone else have this experience? I'm not complaining at all, just curious.

 

[theresad]

My son just got his first yesterday too. He had to take a nap for a few hours in the afternoon and seemed tired most of the day, but went to work today and said he felt great. He's 21 and his sleep schedule is a train wreck, so not the best point of reference, but he did seem to have more in the tank today than is usual for him.

 

[dave13]

My 22 month old had his first infusion yesterday. It seems as though he is actually more energetic than normal. I have read that most feel wiped out the next day. Anyone else have this experience? I'm not complaining at all, just curious.

Have you checked out 'The Parents of Young Ones' support group? A place to ask all sorts of questions. http://www.crohnsforum.com/showthread.php?t=59511

My personal experience when I started Remicade...at age 51...is as follows. I napped pretty hard after my first few infusions,even a bit fatigued the next day. My first infusion was a year ago July 30th. I have been having my infusions in the morning and am able to go on with my day. I admit when evening comes on infusion day I am ready for bed.

I urge you to ask your Lil Trooper's GI any question you may have. Information is a good thing. Good luck!

 

[Scifimom]

Hello folks! After flaring for 6+ months -18 kilos lost, two rounds of pred and 4 days at the hospital my doctor finally decided that Humira is not fucking working any more and I had my first remicade infusion yesterday, I am going back at the hospital in 15 days for the second and then every six weeks for regular infusions (yay me). So I guess I am a remi now. Today is the first day after I have no idea how much time when I feel somewhat normal. Wish me luck in my Remi Journey.

 

[dave13]

Hello folks! After flaring for 6+ months -18 kilos lost, two rounds of pred and 4 days at the hospital my doctor finally decided that Humira is not fucking working any more and I had my first remicade infusion yesterday, I am going back at the hospital in 15 days for the second and then every six weeks for regular infusions (yay me). So I guess I am a remi now. Today is the first day after I have no idea how much time when I feel somewhat normal. Wish me luck in my Remi Journey.

Good luck! The loading doses are the hardest,they are so frequent. Being properly hydrated is always a good thing. Like I said a couple of posts ago,I seem to do fine after infusions now.Give in to the urge to nap during infusions,ask for another pillow.:thumright:

 

[Scifimom]

Oh I will. In Greece they give you a load of antihistamine before the infusion to avoid allergic reactions and they make me DRUNK. Like....plastered drunk. I will be sleeping straight through my infusions for the first times at least. Blissfull sleep...:ylol::ylol::ylol:

 

[dave13]

Oh I will. In Greece they give you a load of antihistamine before the infusion to avoid allergic reactions and they make me DRUNK. Like....plastered drunk. I will be sleeping straight through my infusions for the first times at least. Blissfull sleep...:ylol::ylol::ylol:

I recall going for infusions this past winter. I'd recline in the chair with a pillow to prop my head, book at the ready. The nurse would put a warmed blanket on me and zzzz...nap time.

 

[aideen33]

Had my first infusion wednesday. Tylenol and benadryl premeds. I was mildly sleepy during but couldnt have slept if i wanted to as they insisted on taking my BP every 15 mins for the first hour and every 30 mins after that...
I did fine, drove myself home and everything, ordered some dinner for the kids and i and then *wham* holy exhaustion batman. I didnt crawl out from under that till late thursday and by Friday felt more like "myself"

I will say I feel better symptom wise than i have in a while

 

[dave13]

Glad it went well aideen33. The nurses want to be sure you don't have any reactions when you start infusions. Once they get to know you and how you do during infusions they won't hover around so much.

Are you able to call your weight in advance? That saves some time. I call an hour before and they are ready when I get there.

 

[astarks]

I think that depends on the hospital, dave13. I know mine won't call the pharmacy until I'm there and the IV is in, because the Remicade is so expensive. One time they had a lot of trouble getting IV access - it took them almost 2 hours - and they almost had to toss the Remicade and order a new bag because the expiration time is so short. Ever since, they won't order till I'm there and accessed.

As for the hovering, that can get annoying. But, they're doing it for our own good! Better that than have a nasty reaction and nobody notice. I usually find that my worst side effect is a few days of severe exhaustion, but it really has been a wonder drug as far as my GI symptoms. I'm glad it seems to be working for you as well, aideen!

 

[Lisa]

I can't call in ahead of time - they have to do a set of vitals before hooking me up to the Remicade - they have it ready to mix when I get there, but don't do the actual mixing until I'm all set.....thankfully I get this done at an infusion center, when they were under construction and I had to get it done at the apheresis center they were CLUELESS - and would not have the meds ready to mix, instead they would have to call down to the pharmacy to get it, which extended my visit by about an hour. UGH....

Oh - and even though I've been on Remicade for so long (10 years) - I still get my BP taken every 15 minutes at first, then when they start bumping up the infusion rate it extends to about every 30 minutes....BP and temp are taken right before bumping up.....

oh - my next infusion is today, 1230 appointment time!

 

[dave13]

I thought it was common to call your weight in ahead of time.I feel fortunate my hospital does it,it saves about 30 minutes at least.

I have a BP cuff on during infusions and it takes a reading every 15 minutes.Last infusion the BP monitor they used worked without having to wear the O2 sensor.It was more comfortable with one less thing attached.Easier to read,text,etc..

 

[astarks]

Yeah, that is nice - I think that waiting on the pharmacy adds probably an hour onto my hospital time.

I wear a BP cuff the whole time, and it automatically runs every 15 minutes. When the nurses hear it going they come in and take my temp. I usually wear a pulse ox the whole time as well, but sometimes the nurses will let me take it off in between readings so that I can use my hand.

Oh well, though. The Remicade has been a miracle drug for me, so I can put up with the extra hospital nonsense.

Have a good infusion, Lisa!

 

[Gram214]

Seems so weird to hear what some of you guys go through to get your Remicade. The place where I get my infusion..( my GI 's facility) has my Remicade ordered way ahead of time from a Specialty Drug Store. Walgreenes in Pittsburg...which is a 3 1/2 Hour drive away from the facility. They fly it in of course though.
Then I get there...they weigh me..take my vitals...give me Benedryl and Solumed and begin the infusion.
I get the pre infusion drugs because I had a bad reaction years ago and actually had gone off Remicade for about 5 years or so. Went back on when I flared badly.
They do one more B/P before I leave...and that's it ! I very seldom get any bloodwork done unless I complain of tiredness or something. Seems they just don't get too excited where I go !

 

[dave13]

Yeah, that is nice - I think that waiting on the pharmacy adds probably an hour onto my hospital time.

I wear a BP cuff the whole time, and it automatically runs every 15 minutes. When the nurses hear it going they come in and take my temp. I usually wear a pulse ox the whole time as well, but sometimes the nurses will let me take it off in between readings so that I can use my hand.

Oh well, though. The Remicade has been a miracle drug for me, so I can put up with the extra hospital nonsense.

Have a good infusion, Lisa!

Glad to hear Remicade has been a miracle drug for you. It has really helped me as well. I am begrudgingly thankful.

Do you all go to infusions by yourself? With someone? Just curious,perhaps it could be a poll question.I go by myself,by the way.I admit I wouldn't mind company from time to time.

 

[Jonny84]

Infusion 3 done! From now on I'll be on 8 weekly infusions so the next one is not until September. Once again no problems at all, was not premedicated and did not feel any side effects from the infusion, in fact I feel great.

Down to 10mg for pred, only a week and a half until I am off it completely - can't wait!

 

[Lisa]

When I have my infusion, I usually work a half day (7-12), then head over to the infusion center at the hospital for my 1230 appointment (it is a mile from my work).....I drive myself home after work. Yesterday I was up and ate, went to bed a little after 7pm...my husband kind of gave me an attitude about going to bed early...after 10 YEARS he still doesn't get that I'm tired the rest of the day....but yet if I stay up, he complains I am bitchy...gee...I wonder why?!?!?!

 

[crohniesierra]

Ive been having really gross tastes in my mouth and i had my first remicade infusion 4 days ago.. could this be a side effect? Anyone else get this?

 

[dave13]

When I have my infusion, I usually work a half day (7-12), then head over to the infusion center at the hospital for my 1230 appointment (it is a mile from my work).....I drive myself home after work. Yesterday I was up and ate, went to bed a little after 7pm...my husband kind of gave me an attitude about going to bed early...after 10 YEARS he still doesn't get that I'm tired the rest of the day....but yet if I stay up, he complains I am bitchy...gee...I wonder why?!?!?!

Yeah,those who don't know what it is like can get impatient and judgmental. I do well after my infusion but I do hit a wall in the early evening the day of.My wife has been less than supportive a few times. I just deal with it and feel a bit sad.

 

[jerseyqueen8]

:mad2: just got diagnosed with Crohn's disease. Had UC and have a jpouch and now this... ERRRRRR...... Now starting the biologic and non-biologic meds. Still waiting for my insurance to approve the Remicade. I am freaked about taking this medication. I just don't want it to take what little quality of life away. I love to Ski and that is one of the only things anymore that I can still do (thanks to bathrooms at the bottom of every hill):thumright: Sooooo, I am nervous about this medication and I hope it will help and not hinder. I am also concerned about having my Jpouch reversed. I have already been told that it will be likely and well, it is freaking me out. So, this is basically a vent. and hopefully I can learn something about the unknown through this group. Thank you for sharing.

 

[dave13]

:mad2: just got diagnosed with Crohn's disease. Had UC and have a jpouch and now this... ERRRRRR...... Now starting the biologic and non-biologic meds. Still waiting for my insurance to approve the Remicade. I am freaked about taking this medication. I just don't want it to take what little quality of life away. I love to Ski and that is one of the only things anymore that I can still do (thanks to bathrooms at the bottom of every hill):thumright: Sooooo, I am nervous about this medication and I hope it will help and not hinder. I am also concerned about having my Jpouch reversed. I have already been told that it will be likely and well, it is freaking me out. So, this is basically a vent. and hopefully I can learn something about the unknown through this group. Thank you for sharing.

Sorry about the diagnosis but glad you are seeking information.We all need to vent and this is a good place to do it.

I understand your apprehension about Remicade.I don't see any reason you couldn't continue skiing,it shouldn't have any affect in that regards.

I started infusions one year ago this month.Honestly,I feel I am finally starting to be able to live a 'normal' life again.I find I have longer stretches during the day where I can be productive and not feel so fatigued.I came home and napped after my first infusion and felt a bit tired the next day.Since I've been on the eight week schedule I feel fine after infusions.I have them in the morning and get out in time to take my Dad to lunch.

 

[Lisa]

:mad2: just got diagnosed with Crohn's disease. Had UC and have a jpouch and now this... ERRRRRR...... Now starting the biologic and non-biologic meds. Still waiting for my insurance to approve the Remicade. I am freaked about taking this medication. I just don't want it to take what little quality of life away. I love to Ski and that is one of the only things anymore that I can still do (thanks to bathrooms at the bottom of every hill):thumright: Sooooo, I am nervous about this medication and I hope it will help and not hinder. I am also concerned about having my Jpouch reversed. I have already been told that it will be likely and well, it is freaking me out. So, this is basically a vent. and hopefully I can learn something about the unknown through this group. Thank you for sharing.

Hi 'neighbor'..... I just sent you a PM.....I've been on Remicade for about 10 years and doing very well on it. Please peruse the forum, you will find a ton of information here and a ton of helpful people too!

 

[astarks]

Glad to hear Remicade has been a miracle drug for you. It has really helped me as well. I am begrudgingly thankful.

Do you all go to infusions by yourself? With someone? Just curious,perhaps it could be a poll question.I go by myself,by the way.I admit I wouldn't mind company from time to time.

I typically go by myself. I'm a college student, so I live several hundred miles away from family. Occasionally a friend will come just to keep me company, but more often than not I'm alone. The benadryl doesn't put me to sleep, so I'm fine to drive. I usually just do class in the morning, infusion from 2:30-6:30 or so, and then try to sleep it off for the rest of the evening once I get home.

I get the feeling that it isn't overwhelmingly common to drive oneself, at least at my infusion center, because the nurses were quite concerned the first few times that I wouldn't be up to driving because of the premeds and such, but I've never had an issue being alone. Gives me a chance to catch up on some reading!

 

[dave13]

I typically go by myself. I'm a college student, so I live several hundred miles away from family. Occasionally a friend will come just to keep me company, but more often than not I'm alone. The benadryl doesn't put me to sleep, so I'm fine to drive. I usually just do class in the morning, infusion from 2:30-6:30 or so, and then try to sleep it off for the rest of the evening once I get home.

I get the feeling that it isn't overwhelmingly common to drive oneself, at least at my infusion center, because the nurses were quite concerned the first few times that I wouldn't be up to driving because of the premeds and such, but I've never had an issue being alone. Gives me a chance to catch up on some reading!

Glad you have someone to keep you company from time to time. Yeah,my first few infusions the nurses stressed I could hang out and rest if needed.How do your friends react?Do they stay for the whole time?My wife can't stand seeing me hooked up,gives her the creeps,she says.So much for in sickness and in health...ha,ha.

 

[Madhu]

Hi all,

I am new to this forum. My husband was dx with Crohn's in Feb 2015. After 2 surgeries for seton placement (2 fistulas), 1 month of latent TB medication (since we are from India), he is now set to start Remicade next week. I read many posts about being prepared for the first infusion, but still really nervous. Is there anything specific that we should keep an eye on, or is he going to feel really better after the first infusion like our GI says?

PS - We are with an excellent GI at NYU who specializes in CD.

Thanks
Aarthi

 

[Tabs]

So I had my second infusion last Monday and I must Remicade as really started to turn things around for me. Only two days after the first infusion I started having formed stools and was able to sleep through the night for the first time in almost a year.

I haven't seen a big improvement over the first infusion, but still, I am sleeping through night consistently and even starting to put on some weight (I have lost 80 lbs since June 2014).

Admittedly I have been a little reckless with my diet so I have to get that under control. Its the first time in a long time I can eat the foods I enjoy without my bowels brutally punishing me for it.

My third infusion is next Friday and I am really hoping my body doesn't reject the stuff. The nurse told me the third infusion can be make or break for a lot of patients. I was on Cimzia for 5 months prior to Remicade, so I hope my body doesn't start developing antibodies.

While everything seems to be going smoothly I still have mental freakouts about the potential side effects associated with biologics. I am a 28 year old male which puts right in the high risk category. I know it is important to keep a positive attitude, but sometime I can't help myself.

Anyways...I hope others are having the same success I have had so far on Remicade.

cheers!

 

[Madhu]

That's great to hear, Tabs! Good luck with ur 3rd infusion. Let us know how it goes. Hope you continue to feel better

 

[astarks]

aarthi: I had to go through a whole slew of drugs - including going off Remicade and then restarting it - but the last moderately severe flare I had that caused them to put me back on the Remicade it worked like a charm. Started noticeably helping after my first infusion and the second loading dose two weeks later pretty much shut the flare down completely. Best of luck to your husband!

dave13: When I lived at home, my dad only came to one infusion, I think; he can't stand blood, needles, etc. My mom would always insist on coming, but recently she's been squirming so much and looking so upset about all the stuff they have to do to get an IV started - I have bad veins to the point that they're discussing a PICC - that even when I'm home for the summers I just tell her that she should stay home.

My friends it sort of depends on the person. A lot of times if somebody wants to come hang out I'll just tell them to come about an hour after I get there and then they stay for the rest of the time. Usually by that point the IV is in, blood is drawn if they need it, and they've done the first few titrations, so it doesn't really look like anything but me sitting under a blanket to them. Honestly, I basically never go out of my way to ask people to come. I have 3-4 friends who when I first started taking the Remicade specifically asked if I would like them to come keep me company at the hospital, so maybe they sort of self-selected themselves as far as being able to deal with it better. But they're all pretty good about it. Sometimes they say frustrating things, but trying to look at it from the point of view of a healthy 20 or 21-year old, I can see that they are trying to help the best they know how.

 

[theresad]

My son started 2 weeks ago and gets his 2nd dose on Tuesday. I was all prepared for a big event at the first infusion but really the whole process was luckily non eventful. They started the IV, and then we hung out for 3 hrs. Most ppl were just watching videos, listening to music and sleeping. They hook you up to monitors and they watch for any issues so it was pretty reassuring. We've noticed some small but good improvements after the first dose and hoping for more to come with the second. My son is 21 and on Imuran too, so @Tabs, we feel the same anxiety. We didn't have a choice because of how bad he was getting, so we really had to deal with the devil we knew and I guess all you do is take it one day at a time and not worry until you need to. Wishing all of you guys well and thanks for supporting the grou!

 

[dave13]

astarks-I can relate to people not being able to stand us getting hooked up for an infusion.My wife won't come with me.She recently told me when I was in the hospital for my resection(1.5 years ago)it was hard for her to even come to the hospital to see me.She came every day though,for a week.I told her we could play cards during the infusion...she just can't take seeing me 'with tubes sticking out of me',as she puts it.I accept it.

I think we get use to what we have to go through as crohnies and 'normal' people have a tough time with it...family or not.We are tough as well as resilient.

I also have difficult veins I am told.There have been several infusions where it took three times to insert the catheter.The nurses feel bad and try there best.It has happened with blood work too.I can see where that may be a bit 'upsetting' for someone keeping us company.

Yeah,I accept it is something I have to deal with alone.Who knows,I might have a taker for a card game in the future.I do pack a great snack bag on infusion day.

 

[dave13]

My son started 2 weeks ago and gets his 2nd dose on Tuesday. I was all prepared for a big event at the first infusion but really the whole process was luckily non eventful. They started the IV, and then we hung out for 3 hrs. Most ppl were just watching videos, listening to music and sleeping. They hook you up to monitors and they watch for any issues so it was pretty reassuring. We've noticed some small but good improvements after the first dose and hoping for more to come with the second. My son is 21 and on Imuran too, so @Tabs, we feel the same anxiety. We didn't have a choice because of how bad he was getting, so we really had to deal with the devil we knew and I guess all you do is take it one day at a time and not worry until you need to. Wishing all of you guys well and thanks for supporting the grou!

I hope your son benefits from the infusions.It is a tough choice to commit to remicade.Yeah,once I'm hooked up I read.Others watch video/tv or sleep.I have been known to nap a bit as well.We do take one day at a time,enjoy what we can and worry when we have to.Thanks to you for supporting the group too,keep us posted.

 

[Madhu]

aarthi: I had to go through a whole slew of drugs - including going off Remicade and then restarting it - but the last moderately severe flare I had that caused them to put me back on the Remicade it worked like a charm. Started noticeably helping after my first infusion and the second loading dose two weeks later pretty much shut the flare down completely. Best of luck to your husband!

Thanks astarks!! Hope you continue to feel better

 

[astarks]

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. 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.

 

[Dramadoc]

Hi everyone. I am newly diagnosed with Crohns-just this month and started Remicade on the 21st of July-last Tuesday. I am a 57 year old man and this stuff is very new to he. Came on all of a sudden.
Maybe the "overnight" miracle didn't occur but I tell you four days in and my symptoms seem to be lessening...I went once last night. On 40 MG of press but doc is starting to wean me down to 20 starting Monday and am taking Limodil three times a day that's going to go away too. Next infusion a week from Tuesday and I'm hoping even better results then so maybe it is happening. Really enjoy reading this forum and fiery encouraged. Thanks for this forum.
Thanks again,
Dramadoc

 

[Dramadoc]

I also saw a posting about LDN and Remicade....anyone taking both?

 

[Madhu]

Hi everyone. I am newly diagnosed with Crohns-just this month and started Remicade on the 21st of July-last Tuesday. I am a 57 year old man and this stuff is very new to he. Came on all of a sudden.
Maybe the "overnight" miracle didn't occur but I tell you four days in and my symptoms seem to be lessening...I went once last night. On 40 MG of press but doc is starting to wean me down to 20 starting Monday and am taking Limodil three times a day that's going to go away too. Next infusion a week from Tuesday and I'm hoping even better results then so maybe it is happening. Really enjoy reading this forum and fiery encouraged. Thanks for this forum.
Thanks again,
Dramadoc

Hi Dramadoc,

Great to hear ur symptoms are lessening. My husband had his first Remicade 2 days back, on Thursday. He has been feeling extremely tired most of the day and sometimes he has a sudden bout of energy. Did you have this too? Good luck for ur second infusion

 

[Dramadoc]

The energy has come and gone like your husband's but has been a slow and steady rise...and my appetite is also slowly increasing too...which is good because I lost about 25 pounds and need to get it back...my advice so far to him is be patient and let the med work...the overnight miracle is a false construct but I'm all set for the slow but steady increase. Let me know what happens with your husband and I'll do the same.

 

[Madhu]

The energy has come and gone like your husband's but has been a slow and steady rise...and my appetite is also slowly increasing too...which is good because I lost about 25 pounds and need to get it back...my advice so far to him is be patient and let the med work...the overnight miracle is a false construct but I'm all set for the slow but steady increase. Let me know what happens with your husband and I'll do the same.

Thanks Dramadoc. He lost around 25-30 pounds too and has to get it back. I now realize the overnight miracle doesn't happen for everyone, so I'm waiting for the slow effect. Any effect on the positive side is ok with me, however slow. I will update you

 

[theresad]

My son just had his second loading dose. He was in a really bad flare when he started Remicade, and after the first dose, it did seem that his symptoms started lessening a bit (better appetite, a little more energy, more formed poop). He was exhausted after the first infusion, but was fine the next day. After the second dose, he was tired for several days. He also seems to now be bothered by seasonal allergies all of a sudden, which is a new thing.

He still seems to still be gradually improving but it is definitely not an overnight thing. Plus I think the more doses you get, the more you improve, but then more some of the small and annoying side effects of Remicade start to take effect. #joysofcrohns....

PS: @dramadoc, my son is on LDN along with Remicade. I don't think there are any contraindications, or at least our GI didn't ask us to stop taking LDN when starting up Remi.

 

[Dramadoc]

Ok, Sunday update...been having all kinds of sleep issues and taking two melatonins to help but last night took two Tylenol Pms and slept through the night and woke up at 6 and time for the Limodil...was groggy too groggy and back to the melatonin tonight...but feeling better with that edge for all day in day 5 of Remicade...I do feel it's helping...

 

[Twbuto]

I folks. I am on Remicade, after Cimzia, and Humira failed to lessen symptoms. It has been one year on Rem. It took 3 months to work. No miracle, as you could expect. So, along with many vitamin supplements, my primary med is Remicade every 6 weeks, and Imuram 100 mg daily . Daily challenges but this program has put me in a livable condition. Energy, like all my Cronnie friends , is an issue, along with Monthly Iron infusions..but let's pushing,,take care friends.

 

[dave13]

astarks-keep us posted how that works for you.

 

[Twbuto]

Hi fellow cronies ,
My Dr is a University of Michigan specialist , I go to him because several years back my entire colon was removed, thus living with an internal J-pouch, replacing my colon and rectum. U of M is pretty good with more severe conditional Crohns situations. Remicade only took me partially towards improvement of life style. But, with the addition of Imuram, 100 mg per, my conditions are 80% improved.
Just something to bounce off your GI doctors.
Take care and keep paddling.

 

[Red_one]

New to the forum, but not to Crohn's (unfortunately) I've been on Remicade for almost 6 years, and I have nothing bad to say about it. I very much look forward to my infusion, I go to the clinic in the morning, get infused and then go to work afterward. I always feel fantastic after. I'm usually in such a bad flare by the time I have my treatment that I can barely walk from joint pain, fever, etc., within 1 hour of being infused, I feel like a new woman. It's my miracle drug.

I don't take anyone with me to the clinic, I look at it like a chance to get some quiet time with nobody bugging me! To read, watch Netflix, or maybe nap?

GI has recently put me on Entocort & 6-MP + 3,000 IU of Vitamin D/ day to try to reduce the flare to nothing...claiming it's the ideal combination to put me in remission, so far, I just feel really tired, so we'll see.

 

[Dramadoc]

I have my second infusion on Tuesday and frankly the first one worked for about a week. What has been the experience of the group? I'm ready for this to work...
The Frustrated Dramadoc

 

[theresad]

@dramadoc, it's my understanding that the loading doses are done to build up to the right levels of Remicade in your system. Our GI told us that while we may experience some improvement in the loading phase, we will need to get to therapeutic levels (and stay there) to really see a difference. My son has been getting some relief (he has had his first 2 doses; 3rd loading lose is 8/18) but he started Remicade in a very severe flare, so we are trying to be patient. I think once loading is over, it's important to keep tabs on how long the effects last, because they'll tweak to a different timeframe (every 6 weeks vs. 8 weeks for example) if you can't last the whole time between infusions.

Good luck to you - this takes alot of patience so hang in there and hopefully you'll find relief soon.

 

[astarks]

dave13: will do! My next infu is in about 2 weeks, so I'll fill you all in on how it goes.

theresad: Interesting to hear about the seasonal allergies. I never had allergies as a kid, but the last few years they've been terrible. I never made a connection to the Remicade though.

aarthi: I find that I have a similar issue with energy levels. After an infusion, my biggest side effect is pure exhaustion for 24-48 hours. But, every once and a while I'll get a spurt of energy. I find that if I overdo it when I feel the energy coming on though, it makes me sicker in the end. I usually just lay around for a few days even when I do feel energetic, and the rest seems to make everything better.

 

[Madhu]

Update - We met the GI today after my husband's first infusion and he seemed pretty satisfied with the progress overall. His appetite is back, feeling a lot more energetic and no more abdominal pain (Touch wood)!! He said it's good that his body is accepting Remicade and in some cases it usually stops acting after a while. So he has started him on 6MP now. Also said he will do bloodwork again next month to check everything is on track. Overall, it was a good office visit

One more thing - His blood pressure is still constantly low. Today it was 85/55 but he doesn't feel dizzy or anything. He is completely normal. I am still thinking of ways to bring it up with home remedies so that his second infusion in 3 days will be a bit smooth. Any suggestions would help. Thanks!!

 

[astarks]

aarthi: I have chronically low bp associated with dysautonomia myself. Mine used to run about 90/50, which sometimes even caused me to pass out when I would stand. I take prescription meds for it now - Florinef, which builds blood volume, and midodrine, which is a vasoconstrictor - but if you don't want to go the prescription route, my cardiologist/neurologist also have me taking over the counter salt tablets. They're usually made for athletes, but they work just as well for low bp. I take 2 grams a day by tablet, more if I workout or am sweating a lot, but check with your doc for a good dosage for your husband! Also, incorporating really salty foods help. One of my docs suggestions was tomato juice or V8 as they are heavy in sodium. The salt helps build blood volume, thus raising the bp. And, in the same vein, drink a ton of water. I do 2 liters a day, and I can feel a huge difference in my energy and cognitive abilities when I don't get all of my water in. Hope that helps!

 

[Madhu]

Thank you so much, astarks! I will try the over the counter meds and also make him drink a lot more water. Tomato juice is also a good idea, thanks for that

 

[Dramadoc]

Ok, second infusion today and feeling much more positive about things...but I will tell you the flow of solid poop has started and it feels sooooo good. GI said I might have to control things with Limodil in public and that's fine. Preds down to 10 alternating with .5 for ten days the none and .5 until my third infusion at the end of the month. Hope I've turned the corner...now the high protein weight gain diet and on the way to normal again...fingers crossed, folks...

 

[Madhu]

Ok, second infusion today and feeling much more positive about things...but I will tell you the flow of solid poop has started and it feels sooooo good. GI said I might have to control things with Limodil in public and that's fine. Preds down to 10 alternating with .5 for ten days the none and .5 until my third infusion at the end of the month. Hope I've turned the corner...now the high protein weight gain diet and on the way to normal again...fingers crossed, folks...

Great to hear that :thumleft: Hope you come back to normal completely soon

 

[Soohie]

Just diagnosed a couple weeks ago. My first treatment is tomorrow.
Hope this helps me get off the Presindone it causing serious skin issues I feel like I am in high school with acne

 

[Dramadoc]

Well the road back to normal is under way...slowly but steadily getting better and more controlled...just a few normal like poops and no diarrhea...control by one Limodil when necessary to go in public...and at night to sleep...high protein wight gain diet I hope is starting to take effect. I feel healthier...Thanks Remicade and that was just the second loading dose...less than three weeks to the last loading dose then the regulat eight week dosage. I'm encouraged...

 

[Madhu]

I know right? Remicade rocks, knock on wood Glad you're feeling better. My husband had his 2nd loading dose yesterday and he feels better too. Take care

 

[astarks]

aarthi: You're very welcome, I hope it helps! Keep us updated.

 

[michelle_dani]

Hi
I just had my second Remicade infusion and I felt good the first 2 days but once the third day hits I feel awful. This happened to me the last time but this time it was worse pain and I even threw up 3 times this morning also doesn't help that my stomach is so bloated. I'm still on Predisone and was on 10mg but every time I have an infusion they up me to 40mg before they give me Remicade and then go on my regular regime of 10mg but now I'm on 15mg since the pain was unbearable. I don't know if I'm having problems from the Remicade itself or the Predisone since I go back on such a low dosage.

If anyone can help or give advice that would help me out a lot

 

[duh panda]

Was wondering if anyone has ever spiked a fever while receiving their infusion?

This is my third time starting up in 9 yrs. as a last resort, and just finished with the third loading dose is this afternoon. No fever etc. going on at start but spiked to 101.8 during until I'm guessing the Tylenol and benadryl kicked in at which point it dropped and stayed around 99 for the second half. Nurse didn't seem concerned but i never spiked fevers during the first two times I went through loading and up to just a year of matinence doses.

 

[Jonny84]

I have a question - how often can you get Remicade?

My last infusion was 5 weeks ago and my symptoms are creeping back, nothing too bad at this stage, just some watery D at the moment but obviously I am keen to nip this in the bud as soon as possible. Wondering if they can give me my next infusion early.

 

[duh panda]

I've heard as often as 4 week intervals, but 6 is common if your insurance will approve. I'd think it's more an issue of insurance and coverage.

 

[Ian_H]

I just started remicade and am new to the remicade club. Nice to see others in boat! I had my first infusion aug 6 and go back the 24th for my 2nd. Then every 4 weeks. I am already having sinus problems which I never did before. Anybody else struggle with that? I know it's side effect.

 

[Jonny84]

I just started remicade and am new to the remicade club. Nice to see others in boat! I had my first infusion aug 6 and go back the 24th for my 2nd. Then every 4 weeks. I am already having sinus problems which I never did before. Anybody else struggle with that? I know it's side effect.

Interesting to see you will be having infusions every 4 weeks - are you having particularly severe symptoms?

 

[Ian_H]

Yes unfortunately. I am on 150 of Imuran once a day which was working great forn3 years but the past year has been pretty bad. My docs plan is remicade infusions every 4 weeks for 6 months then if all goes well and I'm done with my prednisone taper every 6weeks.

How's remicade working for you? Side effects? Pros or cons you'd like to share?

 

[Jonny84]

Yes unfortunately. I am on 150 of Imuran once a day which was working great forn3 years but the past year has been pretty bad. My docs plan is remicade infusions every 4 weeks for 6 months then if all goes well and I'm done with my prednisone taper every 6weeks.

How's remicade working for you? Side effects? Pros or cons you'd like to share?

Remicade has been excellent for me - I was in hospital with a nasty flare which steroids were struggling to control. They gave me my first infusion and within 24 hours the bleeding had stopped and within 72 hours I was back to normal.

Had a bit of a scare over the weekend, was at the toilet 12 times with no blood on Saturday so I went into hospital and they did some tests. My CRP was less than 1 and they also did an abdominal xray that came back normal so there was no inflammation at all. I can only assume I have picked up some sort of bug or virus but obviously I am delighted it has not turned into another flare. I can only assume that the 6mp and infliximab ha played a role in keeping it at bay...

 

[Ian_H]

Glad your scare wasn't as serious as you thought. Thats a relief. Glad Remicade is working well for you! excited about the future with it for me as well. Also I am a big news reader and Pfizer has bought Hospira, another pharmaceutical company. This means a biosimilar of Remicade. Not a Generic. 30-40% cheaper! A few years down the road but already in Europe. Check out the link below.

http://www.wsj.com/articles/lower-priced-generic-copies-of-remicade-go-on-sale-in-europe-1424904471

Ian

 

[Ian_H]

Got a question for everyone. I just started Remicade a couple weeks ago and have been fine other than some sinus problems. But today I have while cooking became very dizzy and had trouble breathing and felt like fainting. My heart rate was fast and pounding. Also my hands are very shakey. Anyone experience this? I'm not saying it's the remicade just seeing if anyone had the same experience. I have high anxiety as well so it could of been a random anxiety attack? Thoughts

Ian

 

[Dackelmann]

Sounds like anxiety being an underlying condition exacerbated a change in your body with Remicade. I had really bad sinusitis a few months back and had to postpone my infusion, yeah, get those little ill health episodes that can't explain.Weak, light headed, etc. I hope the Remicade works for you- mine took 3 or so infusions to kick in. Just monitor how you are feeling and talk to your GI about it. I think have a natural anxiety underneath my bubbly 'public' face.
Cheers- EL Dacko.

 

[Ian_H]

Thanks I agree with you. Also I'm still tapering off pred and that makes me feel weird sometimes.

 

[duh panda]

Thanks I agree with you. Also I'm still tapering off pred and that makes me feel weird sometimes.

was gonna say, doesn't sound like anything I've experienced from Remicade, but sounds spot on to pred. around dose changes.

 

[crohnssuxx]

I'm a newbie so hopefully I post this correctly....

I currently get Remicade infusions every 8 weeks. Has anyone ever tried taking Boswellia, curcumin and/or ginger in addition to getting infusions? Just curious if there are any side effects or if it helps?

-Remicade infusions
- Current supplements: Vitamin D, Iron, multivitamins and omeprazale

 

[Madhu]

I'm a newbie so hopefully I post this correctly....

I currently get Remicade infusions every 8 weeks. Has anyone ever tried taking Boswellia, curcumin and/or ginger in addition to getting infusions? Just curious if there are any side effects or if it helps?

-Remicade infusions
- Current supplements: Vitamin D, Iron, multivitamins and omeprazale

Hello

I am Indian and we use ginger, turmeric etc in our food almost everyday. It is known to be anti-inflammatory and I know a lot of Crohnies who take the supplements for them. So I think it is good. I personally use a lot of turmeric while cooking after my husband was diagnosed with Crohn's.

Good luck!

 

[Soohie]

Had my second remicade treatment yesterday a bit nausea afterward seemed stronger then first treatment doing well today after a good night sleep
Number 3 in a month hope I continue down this path
As it seems to be working for me

 

[wolfegirl_08]

Hi everyone. I'm new to the group but not new to remicade. I've been taking remicade since I was 16. I'm now 27 and still taking it. Hope everyone has a good day.

 

[Jonny84]

Hi Wolfegirl,

So that must mean you have been taking remicade since it was first approved? How has it worked for you over the years?

I'm only on my 4th infusion but so far so good...

 

[wolfegirl_08]

I actually love it. I feel like a million dollars after I have it done.

 

[Jonny84]

I actually love it. I feel like a million dollars after I have it done.

So its kept you in remission for all those years?

 

[wolfegirl_08]

So its kept you in remission for all those years?

I've been in remission off and on. My doctor recently upped my dose and strength.

 

[Jonny84]

Welcome to the forum! Keeps us up to date with how you are getting on.

 

[Mollydolly]

Going to be starting remicade soon for 1st time what should I know?? Gi literally told me nothing but the name

 

[Mehita]

Hi Molly ... Remi usually takes a couple of hours. You may want to clear your day for the first one, just so you can relax and chill afterwards. You may or may not get pre-meds of Tylenol and Benedryl or similar. My son usually feels great after, but the Benedryl they give him makes him sleepy. That being said, you may also want to arrange for a ride, again, at least for this first infusion until you figure out how your body responds.

My son doesn't get sick any more often than the rest of the family, but when he does get sick with a cold or virus, it takes longer for him to get over it. Luckily, he hasn't had any bacterial illnesses yet. I hear those can be doozies.

He's had no side effects to speak of and it started working for him immediately, though for some it can take 4-6 months.

What's nice about Remi is that you can do a lot of dose adjustments before needing to give up on it.

Good luck!

 

[bopgenorth]

Has anyone else noticed bloating in the face and abdomen and a really bad headache after getting Remicade? I went in for my first treatment on Tuesday and I woke up in the middle of the night with a terrible headache and my husband and I both noticed that I was looking puffy/bloated all over.

 

[Jonny84]

Has anyone else noticed bloating in the face and abdomen and a really bad headache after getting Remicade? I went in for my first treatment on Tuesday and I woke up in the middle of the night with a terrible headache and my husband and I both noticed that I was looking puffy/bloated all over.

Not something I have experienced. Are you on any other medications as well as Remicade?

This definitely sounds like something you should talk to your GI about...

 

[Madhu]

Has anyone else noticed bloating in the face and abdomen and a really bad headache after getting Remicade? I went in for my first treatment on Tuesday and I woke up in the middle of the night with a terrible headache and my husband and I both noticed that I was looking puffy/bloated all over.

I havent heard of this. You got it the night after your first infusion? You may be having a reaction to it. Definitely have to report it to your GI. Hope you feel better.

 

[Mollydolly]

Hi Molly ... Remi usually takes a couple of hours. You may want to clear your day for the first one, just so you can relax and chill afterwards. You may or may not get pre-meds of Tylenol and Benedryl or similar. My son usually feels great after, but the Benedryl they give him makes him sleepy. That being said, you may also want to arrange for a ride, again, at least for this first infusion until you figure out how your body responds.

My son doesn't get sick any more often than the rest of the family, but when he does get sick with a cold or virus, it takes longer for him to get over it. Luckily, he hasn't had any bacterial illnesses yet. I hear those can be doozies.

He's had no side effects to speak of and it started working for him immediately, though for some it can take 4-6 months.

What's nice about Remi is that you can do a lot of dose adjustments before needing to give up on it.

Good luck!

Thanks! I'm just at the point where I will do anything to feel better. Will plan on getting someone to go with me to chat and maybe drive. I know a lot of people do well on it so worth a try. It's so good to hear about the adjustments they can do with one med no one seems to understand the length of time and feeling bad while finding something that will put you in remission. This has been the worst summer I've had in 15 years. Looking forward to being a real person again soon!!!!

 

[Ian_H]

Going to be starting remicade soon for 1st time what should I know?? Gi literally told me nothing but the name

Hey Molly,

I have had 3 infusions on remicade so far with minimal side effects. Its seems more scary of an experience than it really is. After your first infusion, you will feel mentally better, at least i did. As far as physically i was just tired from the premeds of benadryl and tylenol. So far no reactions, which are uncommon anyway. So don't be nervous!

I wish your GI explained more about the drug! If you have any questions please ask! Any of us on this forum will be happy to help. Best of Luck.

 

[Chevone]

Will be getting the first infusion tomorrow, EXCITED :thumleft:

 

[Ian_H]

Will be getting the first infusion tomorrow, EXCITED :thumleft:

Whoop whoop!

 

[Dramadoc]

Had my third loading infusion last week and the road to normalcy continues...still taking Limodil for complete control as I started back teaching part time last week...so Remicade is working and the difference in my condition is noticeable which is very encouraging. My GI has scheduled a colonoscopy on the 25th to check my progress. Next infusion on Oct 20th...hoping for even more stability. Patience is a virtue folks...that's what tell myself and my family...the weight gain has started too...that's encouraging too.

 

[Ian_H]

Congrats! Glad it's working for you. I have only had a few infusions as well. I think it's working wonders but we will know once I finish my pred taper this week. Best of luck!

 

[tysmom]

hi everyone first i want to say god bless all of u for ur strenth and bravery i know the pain u go through as i see my 15 yr old son go through and it just breaks me but as i read all ur success it helps me more than u will ever know... my son was diagnosed with crohns almost 2 yrs ago now it has been a very trying road he has been on pentessa and steroids to help hin and for a while it did but we have recently learned that remicade is the next step our dr wants to take.. im so unbelievably scared when i read all the side effects tomarrow is his first infusion ive been reading article after article(not good for the nerves) and i came here finding real stories from people that have taken remicade i want u to know u have eased my mind i know that i will always worry his is my son my heart my reason for waking up everyday but u have all helped me in so many ways..thank u for being brave enough to share ur stories many mothers like myself appreciate it

 

[Chevone]

Hi!

I got my first remicade dose a week ago. A couple days after that I started feeling ill and feverish. So for 3 or 4 days I have been having fever (especially during the nights), feeling really really fatigued and generaly ill. Could this be linked to remicade as a delayed allergic reaction?
Should I call my Dr?

 

[Ian_H]

I would call your doctor. You can have a reaction. Up to 6 days post infusion. It's not super uncommon and don't think it's anything to worry about but I would still notify him/her. It could be serum sickness which would be from the remicade. Good luck and feel better! Hopefully your body will adjust and it will pass.

 

[DaveD]

Hi!

I got my first remicade dose a week ago. A couple days after that I started feeling ill and feverish. So for 3 or 4 days I have been having fever (especially during the nights), feeling really really fatigued and generaly ill. Could this be linked to remicade as a delayed allergic reaction?
Should I call my Dr?

Call immediately as they may want to run some blood work.