Crohn's Disease Forum » Treatment » Remicade/Infliximab » Overview of Remicade


 
10-09-2012, 03:46 PM   #31
Jeffer
 
Join Date: Jul 2011
Location: York, United Kingdom

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After the third infusion I got to going once a day, an unknown happening for me. Unfortunately after three weeks it is wearing off and increasing. The pain stays with me all the time.

Generally I feel so much better so will stick with the infusions but another three weeks before the fourth.
10-09-2012, 07:33 PM   #32
Yissa624
 
Join Date: Sep 2012
I'm still going 6-10 times and craps! I've only had one infusion so hope hope things get better. Also, doctors is wiening me off prednisone so we shall see what happens!! I go next week for my 2nd infusion, this is my last resort, praying Remicade works!
10-09-2012, 07:38 PM   #33
Yissa624
 
Join Date: Sep 2012
I'm still going 6-10 times and craps! I've only had one infusion so hope hope things get better. Also, doctors is wiening me off prednisone so we shall see what happens!! I go next week for my 2nd infusion, this is my last resort, praying Remicade works!
01-17-2013, 09:57 PM   #34
bob22312
 
Join Date: Jan 2013
Location: Alexandria, Virginia
I don't know how far my grandson is into the "Med Wheel" at this time but his doctor has suggested Remicade twice.
Thanks for allowing me to get the flavor of CD from your posts
All of you guys and gals are tough as nails, like Seal Team 6 attacking CD, to be able deal with CD and share with others also.
01-21-2013, 12:32 AM   #35
Yissa624
 
Join Date: Sep 2012
I'm on maintenance!!! Remicade is working great so far and I'm off steroids!!😄 Been eating healthy and going to the gym daily.
01-21-2013, 09:56 AM   #36
Jeffer
 
Join Date: Jul 2011
Location: York, United Kingdom

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How long did it take you to get off the steroids?
01-25-2013, 08:45 AM   #37
mamagus
 
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Join Date: Jan 2013
Location: North Attleboro, Massachusetts
Nicole - I love your posts! you are so honest - and I need this right now. I am so glad you posted - I am starting my remicade soon - and I have been panic stricken - depressed, sad, angry, have major food fears... and then I read your posts - and I felt NOT ALONE. thank you so much. and I'm so glad the remicade is working for you
07-14-2013, 09:58 PM   #38
MichelleE
 
Join Date: Jun 2013
Location: Walkerton, Ontario

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Thanks Nicole for posting this. I have had a flare up of CD after 5 year remission. I have been on Imuran and prednisone for 3+ months... and so far... no improvements. I am thankfully not dealing with any diarheaa (which is abnormal compared to my precious flare ups) but have never ending pain... which worsens at times but is always there. Anyways if the Imuran doesn't kick in by 2nd week in August I am headed Remicade way and have been somewhat obsessing over it. My husband wants me to be more positive but it is hard at times. I feel that if the Imuran hasn't worked yet, it likely won't.

I am so happy for you that this is helping you. All the power to you for wanting to do the nursing thing at school, and all the best to you. I insist on going to work no matter how tough I may be feeling as at least doing something makes me feel like less of a "sick" person and it takes my mind off of feeling crappy!

All the best to you and please keep posting updates on how you are feeling / dealing with the remicade.
__________________
Michelle E
Ontario
Diagnosed: 2000
Medication: Imuran, Entocort, Buscopan, Elavil, Humira, Vit D3, Vit B12, Folic Acid
Surgery: peri-anal fistualas x 2 2001 and 2005, bowel resection Feb 2014, scar tissue removal 2015
05-26-2014, 05:41 AM   #39
Nmandy
 
Join Date: May 2014
Location: Portland, Maine
My son (17 yrs old) just got Dx with Crohn's. I love reading everyone's stories and thank you so much for sharing. The GI put
Him on prednisone right after the colonoscopy. I keep reading about people's "symptoms", flare ups, etc. but my son doesn't have any symptoms? Is it because of the prednisone? I am really concerned that remicade is the doctors 1st choice. No long term data and my son is only 17......... He was totally fine until last sat when he woke up with a stomach ache???? This is so much so fast my head is spinning..... Thoughts from anyone?
08-16-2014, 09:14 AM   #40
mcornelius
 
Join Date: Jul 2013
Location: Katy, Texas

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Nmandy,
My daughter was dx with CD @ age 11.5 - she had absolutely NO SYMPTOMS except poor growth/poor weight gain and anemia. As soon as she was dx the doctors gave us 2 options: surgery or remicade. We started Remicade the next week. She has been on Remicade for almost a year in a half. She feels the same as before we started the infusion - as she never had bowel "symptoms." Since the initiation of treatment (now every 6 weeks) she has gained 38 pounds and looks so healthy (not anemic). The only side effect she had was some fatigue the day of the infusion (most likely from the benadryl pre-infusion medication). She does have Psoriasis now - that occurred when we spaced out the infusions to 6 weeks. The doctors tell us that is part of her autoimmune CD problem.
We also started growth hormones (a nightly sq injection to help with growth). My daughter will be 13 this next month. We plan on continuing remicade. Hope this helps? It's a tough decision to make when you have to sign legal papers stating your child might get that rare lymphoma.
04-19-2015, 07:19 AM   #41
DaveD
 
Join Date: Apr 2015

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Here is an open question for everybody on Remicade and particularly those who have tried Humira too. I will post the same on the Humira pages. I will be offered a choice between these two drugs. It has been presented to me as a simple choice of delivery (infusion vs injection) and with no other differences.

OK, so these are different drugs and will have different success rates with different people. I am planning to go for Remicade first and later I can switch to Humira for self-administartion if I choose.

However, from the guys and girls out there with experience, which is the better bet to start with? Both are recommended to me for both the Crohn's classic stuff and the extraintestinal symptoms of related arthritis.

Please share your experience with me?

Thanks
Humira was not 100% effective for me as I had to stayon prenisone. Remicadee with 6-MP as put me in remission almost immediately after 1st infusion. Only on it 7 weeks so far , but so far , so good.
04-19-2015, 07:22 AM   #42
DaveD
 
Join Date: Apr 2015

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Thanks Nicole for posting this. I have had a flare up of CD after 5 year remission. I have been on Imuran and prednisone for 3+ months... and so far... no improvements. I am thankfully not dealing with any diarheaa (which is abnormal compared to my precious flare ups) but have never ending pain... which worsens at times but is always there. Anyways if the Imuran doesn't kick in by 2nd week in August I am headed Remicade way and have been somewhat obsessing over it. My husband wants me to be more positive but it is hard at times. I feel that if the Imuran hasn't worked yet, it likely won't.

I am so happy for you that this is helping you. All the power to you for wanting to do the nursing thing at school, and all the best to you. I insist on going to work no matter how tough I may be feeling as at least doing something makes me feel like less of a "sick" person and it takes my mind off of feeling crappy!

All the best to you and please keep posting updates on how you are feeling / dealing with the remicade.
swithch to 6mp and Remicadee worked for me. May take a few weeks to a few months for 6mp to start working if not on steroids at same time but hopefully you can wean off steroids till it works. i did well with remicade and not effective with humira.
04-05-2018, 08:28 PM   #43
thike1966
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Join Date: Apr 2018
Location: CENTENNIAL, Colorado

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My third infusion was rejected three days after. I went into neck and back seizures every time I sat down in a my reclining chair or on the toilet. Frozen for 5 to 20 minutes in pain for 2 1/2 days and then chronic diarrhea to the point whatever I ate came out as it went in. I was about to go to the ER when I called my GI doc's office and they had me go do lab work and then get back on Prednisone. The lab work showed my C-Reactive Protein was at 181, when it is supposed be at 8, showing massive swelling reaction. My physician's assistant kind of freaked out when she was going over the lab work with me, two weeks later and told me I should have come in sooner. I explained that it was the scheduler who did it. She said, when feeling that bad, insist on coming in sooner. I told her if the Prednisone did not work, I was going back into the hospital.

Luckily, Prednisone and Lopermide, anti-diarrhea meds are keeping me in line until my next appointment. My PA also put me on Imuran. I will see one of the head doctors next week and discuss another biologic and possible surgery. I anticipate another colonoscopy to get an accurate pictures before they decide to remove my colon or parts of my small intestines.

Right now, I absorbing better because the Lopermide slows everything down and the Prednisone is swelling me up and causing me to have anger issues at night, when my defenses are at their weakest. I have rarely lost my temper, and this is a strange experience that drives me mad.

I am lucky to be taken care of by my father and a good nature 2 year old lab/boxer mix.

Remicade did work well until my body rejected it and now I feel like I am on a cliff being held up by hormones and anti-diarrhea med. I see the doc next Tuesday. Tomorrow, a mobile lab is coming to my house to draw blood to determine by anti-body response and if I can start a new biologic. Then the following week I do another full blood lab workup to see weather the Imuran is working. I feel like the doc appointment between lab works will mean at most he will tell my to get a colonoscopy and left hanging for another few weeks. I am taking iron, liquid B12 and liquid D3 and potassium. I will start calcium if I am on another month of this crazy hormone that weakens bones. I am just tired of feeling like I am spinning my wheels since my rejection last month.

I took a chance and went to the movies today and missed a few great scenes because I was in the bathroom. But that's just part of this I can't control. My metaphor of riding a bike up a mountain. Sometimes going slow, sometimes like now, having to get off an push my bike, but I will never turn around until I coasting down the other side.

I am happy that Remicade works so well for so many and I wish everyone a quick remission so we can all lead as normal lives as possible.

Last edited by thike1966; 04-05-2018 at 08:29 PM. Reason: Spelling error
04-06-2018, 06:26 AM   #44
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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My third infusion was rejected three days after. I went into neck and back seizures every time I sat down in a my reclining chair or on the toilet. Frozen for 5 to 20 minutes in pain for 2 1/2 days and then chronic diarrhea to the point whatever I ate came out as it went in. I was about to go to the ER when I called my GI doc's office and they had me go do lab work and then get back on Prednisone. The lab work showed my C-Reactive Protein was at 181, when it is supposed be at 8, showing massive swelling reaction. My physician's assistant kind of freaked out when she was going over the lab work with me, two weeks later and told me I should have come in sooner. I explained that it was the scheduler who did it. She said, when feeling that bad, insist on coming in sooner. I told her if the Prednisone did not work, I was going back into the hospital.

Luckily, Prednisone and Lopermide, anti-diarrhea meds are keeping me in line until my next appointment. My PA also put me on Imuran. I will see one of the head doctors next week and discuss another biologic and possible surgery. I anticipate another colonoscopy to get an accurate pictures before they decide to remove my colon or parts of my small intestines.

Right now, I absorbing better because the Lopermide slows everything down and the Prednisone is swelling me up and causing me to have anger issues at night, when my defenses are at their weakest. I have rarely lost my temper, and this is a strange experience that drives me mad.

I am lucky to be taken care of by my father and a good nature 2 year old lab/boxer mix.

Remicade did work well until my body rejected it and now I feel like I am on a cliff being held up by hormones and anti-diarrhea med. I see the doc next Tuesday. Tomorrow, a mobile lab is coming to my house to draw blood to determine by anti-body response and if I can start a new biologic. Then the following week I do another full blood lab workup to see weather the Imuran is working. I feel like the doc appointment between lab works will mean at most he will tell my to get a colonoscopy and left hanging for another few weeks. I am taking iron, liquid B12 and liquid D3 and potassium. I will start calcium if I am on another month of this crazy hormone that weakens bones. I am just tired of feeling like I am spinning my wheels since my rejection last month.

I took a chance and went to the movies today and missed a few great scenes because I was in the bathroom. But that's just part of this I can't control. My metaphor of riding a bike up a mountain. Sometimes going slow, sometimes like now, having to get off an push my bike, but I will never turn around until I coasting down the other side.

I am happy that Remicade works so well for so many and I wish everyone a quick remission so we can all lead as normal lives as possible.
I hope they find the right combination of medicines for you soon.
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