Hello Im from UC boad/what is the longest time anyone has been on Remicade

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Date Joined Dec 2007
Total Posts : 354
   Posted 3/25/2008 5:21 PM (GMT -6)   
The reason I am asking is I am considering starting it but I am only 26. I thought I read somewhere that they don't have any long term studies that have been done on it.
Jessica 26/F
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Prednisone 40Mg/day taper every 5 days(at 5 mg currently every other day)
Culturelle once daily
Tried (Entorcort EC 9ml/day)

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Date Joined Jan 2003
Total Posts : 1668
   Posted 3/25/2008 5:37 PM (GMT -6)   
There is a Young Lady I read about on the Teen With Crohn's Board who was one of the first Pediatric IBDers to start Remicade quite a few years ago when it was approved for IBD. I know she has had over 100 infusions but can't say exactly what the time span was in years. She was about 20 when she posted about her 100th infusion. To keep the Remicade working she did have take double doses and shorten the length of time in between infusions after a few years on it.

My Daughter is 26 and has been on Remicade for just about 5 years now. This past year she has been on double dose and her last infusion a couple of weeks ago was a Triple dose, something you don't hear much about but am told that sometimes Quadruple dose is used for some patients. Not much data at all about Triple and Quadruple dose that I could find.

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Date Joined Sep 2006
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   Posted 3/25/2008 5:56 PM (GMT -6)   
I was 22 when I started Remicade that was back in 2001 it was late summer at the time.  My last remicade treatment was Dec 26, 2006.  I had set up the following treatment but after being in remission thanks to remicade from august 2005 then I flared like crazy in august 2006.  I initially was getting the infusion every 6 weeks, then about 2 yrs later they upped the dosage without my weight going up since it seemed as though I needed more.  (my dose increased when I moved from RI to CA and was seeing newer docs (younger ones too with newer info and experience with more RA patients....I had the option of getting remicade at an RA docs office or the hospital and I chose the RA doc who also was a PCP prior to deciding to return to school to have a focus in RA but still kept up pcp clients).
I had colonoscopies that determined I was in remission the test had shown some issues but nothing like the past.  I was on Imuran too at the time when in remission and was taken off of that since I kept getting bronchitis and pneumonia with every cold I got and that would also postpone remicade treatments at their normal times and I would begin having issues when I would go too long without it.  I found at about 5 weeks my joint pain would return that was more the issue why I began the remicade rather than my gut since the pills helped my gut however never placed me in remiision as the remicade did.  When I was in remission the GI changed my infusions to 8 weeks plus I had begun having adverse reactions to the remicade in early 2005 it would cause heart arrythmia, tachycardia and chest pains even when I was pretreated with prednisone and effects were the same whether it be oral or IV for pred.  I ended up really bad in February 07 my ileum perforated which was why I didnt make my next remicade appt.  I then too changed GI docs since the one I had for many years did not believe me when I told him I was flaring and I had a CT scan and  a CT enterography to back it up...the CT also showed 4 kidney stones and my GI at the time told me oh that hospital says that a lot when it isnt true....needless to say since Feb 07 I have had over 20 CTs and a cpl MRIs including MRI Enterography and they showed what docs were looking for but also all of them showed the stones....and that makes 3 hospitals and additional x ray imaging places that were not affiliated with any particular hospital.
My new GI since I just met him in Feb 07 wanted to as a preventative try pentasa or imuran I told him the issues with imuran.  I started to flare not long after my surgeriesd so I was placed on Entocort and we discussed either remicade or humira again it was my joints that were screaming for something that would also help that.  I informed him of the recent issues I had had with Remicade plus the fact thatI have the worlds worst veind and I refuse to have a port placed...the lady that drew my blood last week use to even work in drug rehab clinics and oncology and she had to try 3 times...u can hit my veins that are tiny but they blow or roll away she finally had to get me with an infant butterfly needle...also in the hospital it took 13 tries to get an IV in me cuz at that hospital they use CT contrast iv die to place a PICC line, I had anesthesiologists etc try.
I also talked with my PCP about it and since every time I got a cold my asthma would get really bad especially when turned into pneumonia he preferred I try HUmikra at this point because of the more recent reactions as well.  Remicade was amazing for what it was able to help me with I would have headaches for about 1 week after the infusion and I would also have joint pain approx 1 week later and it was so severe it would keep me awake overnight but after that 1 night of pain I was good for about 4 or 5 weeks.  WEhile I was in remission the premed with pred gave me the joint pain I always did accept the tylenol and benadryl (in CA they used claratin instead and had benadryl on hand if claratin wasnt enough).  While I was in remission I was good on the every 8 weeks and was actually cutting down on Pentasa and was on only 250 mg a day of that and the remicade for my CD.
I now am on HUmira and everyother week wasnt enough for me and that is strange being that I only weigh 90 pounbds since my last surgery I had gone down to 85 pounds (I am 4' 9.5").  Strange how humira is not weight based but remicade is yet they both work with the TNF factor as far as I understand.  I have to give myself Humira 1 time per week and If I have to skip a week I feel it at about 10 days after my last shot and it takes me a few days to feel the full effects of it.  With Remicade I felt the effects in a cpl days as well.  I just started back on the every week of humira after seeing my GI after my 4th Surgery within 1 year for my CD since it keeps remanifesting so fast...I have Crohn's colitis.  I had a wound infection .....again....so I had no humira from Jan5th til Feb 26th....then my GI had me on every other week but about 1 week before my HUmira began again my joint pains were to the point some days I was unable to walk without a splint on and the stomach pain increased.  I see him again in mid april and if the pain in my abdomen is still evident I go for another MRI to see if it remanifested again (I only have 1/4 of my colon left and already had and hated the whole ostomy thing but I must say I had no pain joint or abdominal CD wise with it but even that created a fistula and I had abdominal abscesses and it infected my whole abd wall etc...I have been to heck and back in the past year but I would never taken those years away when I was on Remicade since it was the 1st thing ever to put me in remission.
I was Dx in 1987 when I was 8 and knew nothing of remission until 2005 when I was 26 I must say it was a pretty good year I had all around and I wonder had my old GI listened to me and the medical evidence maybe he would have increased the frequency of the remicade to where I had been and maybe I would have avoided Sx or maybe tried HUmira on me but I think I was meant to see the GI I see now since my old one kept insinuating I should not have children my New GI has no porblems with it as long as I get the okay from him (hopefully if this pain gets better or the MRI shows things are okay and things go well into the summer he will give my husband and I the okay)  with a high risk ob and careful monitoring of course but he has been involved in many tests with pregnancy and CD meds etc and what is safe he also teaches at BRown and keeps up with the newer studies on the newer meds and he does his homewok on things and it obviously is better to be on no meds to be pregnant but certain meds are okay if monitored some are safer than others and many people have been on remicade longer than others some never have issues with it some have immediate issues and some like myself take a while to develop them.
I had 1 cold since on the Humira and it turned into a sinus infection (which mine always do) but it stopped there I have not had that happen where it didnt travel to my chest nevermind no bronchitis etc...just that factor alone made my PCP quite happy
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

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Date Joined Aug 2003
Total Posts : 1017
   Posted 3/25/2008 6:13 PM (GMT -6)   
I have been on Remicade since Jan 2001. I stopped once for about 6 months but other than that time I have gone every 8 weeks since 2001.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.

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Date Joined Apr 2005
Total Posts : 2346
   Posted 3/25/2008 6:26 PM (GMT -6)   
I have been on remicade since 2004.

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Date Joined Mar 2006
Total Posts : 1034
   Posted 3/25/2008 7:32 PM (GMT -6)   
i forget when i started it, shortly after it came out, perhaps 1998 or 1999. this was when they thought you could only get it once. but since then i've had several double doses and was on the bi-monthly schedule for years, like most people, using it as a maintenance drug. my last infusion was december 2006. i began to build up antibodies to it in mid/late 2006, so lucky me i discovered the maker's diet at that time and that was the real reason why i stopped taking it - i dont need it any more as the diet got me feeling fantastic.
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

Aimee =)
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Date Joined Jun 2004
Total Posts : 1020
   Posted 3/25/2008 8:33 PM (GMT -6)   
I started it when I was 26 and took it for 2.5 years or so. Now on Humira due to antibodies to the Remicade but I loved that drug while I was on it.

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Date Joined Jul 2005
Total Posts : 733
   Posted 3/25/2008 9:28 PM (GMT -6)   
I started Remicade when I was 23. I'm now 26, still getting infused, and thankful for every moment of my life that it has given back to me! I'll be on it until either it stops working, or they come out with something better!
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered. :-)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 3/26/2008 4:49 AM (GMT -6)   
Hi, I have been on Remicade for almost 5 years. I get infused every 8 weeks.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Regular Member

Date Joined Dec 2007
Total Posts : 354
   Posted 3/26/2008 11:26 AM (GMT -6)   
Thank you all for the imput. I just keep hoping a cure will magically appear and we will all get better. Dragonfly I am so sorry you have been though so much. I think it would be so trying to deal with this as a child.
It seems that almost everyone I have heard from has a positive view of Remicade which is very reassuringly.
Jessica 26/F
Asacol 4pills /three times a day(from 2 pills/ three times a day)
Culturelle once daily
Tried (Entorcort EC 9ml/day and Prednisone)

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