Starting Remicade to fast?

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Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/3/2009 5:18 PM (GMT -6)   
I was diagnosed with pancolits back in Nov'08.  The symptoms havent gone away since I was diagnosed and even before when I first started noticing them back in August of '08.  My GI, I think is pretty good and has done a lot for me since I first started seeing him a few months back.  Nothing has really worked for me, Asacol is worthless, fibre supplement does nothing, sunflower seed and spinach diet is over rated, etc...
 
So my GI requested that I start on Remicade.  Is this to soon? Everyone that I see who is on Remicade started like 2-4 years in to their diagnosis. 
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/3/2009 5:32 PM (GMT -6)   
No. Go for it. Why wait to see how much more you will suffer? Believe me!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, tried to taper but now back up to 20-30 after several really bad days. Waiting for insurance decison on Humira...soon... 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 4/3/2009 6:04 PM (GMT -6)   
Nope, I don't think so. My doc said that if it turns out the course of pred doesn't work for me (it's my first flare) and I can't get off of it, he'd recommend I go straight to Remicade, too. He said that new research suggests it's better to do that than to try immune suppressants such as 6MP.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/3/2009 6:20 PM (GMT -6)   

Nope, not too soon at all- Remicade is now being used as a front-line drug for refractive cases. The reason you see most of us starting 2-4 years into flares is because Remicade hasn't been widely used 'til recently. Most GI's didn't have a lot of experience with it, & the commonly held belief was that it was a last-resort drug. Now, it's believed that you're better off going right to a biologic. Makes sense to me- there's a good chance you'll wind up on it anyway, so why let the damage worsen?


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 4/3/2009 7:00 PM (GMT -6)   
I'll go the other way and say way too soon. No idea if you have done the rectal (hydrocortisone enemas) meds first, but I would do that before remicade. Longer you wait to need to be on a biological med the better imo. If I had got stuck on remicade back in 97 when I was diagnosed, by now my body may have already built up antibodies and rendered it useless. Where would that leave me? The way it stands I still have that option and will use it last resort. When I do move to remicade I hope it lasts long enough till something better comes out.

Asacol was pretty useless for me too. I would drop it and move to colazal and give it a try too. It helped me for a while, but eventually stopped too. Seems you have only done a 30mg max dose of pred and asacol. Just too many other options left.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/3/2009 7:36 PM (GMT -6)   
It depends on the person. I started Remicade less than a year after diagnosis.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/4/2009 1:17 PM (GMT -6)   
Thanks for all of your responses...I guess my only concern is that if I start Remicade and it doesnt work, the next treatment (or lack there of) is surgery and I im NOT ready for that.

Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/4/2009 6:25 PM (GMT -6)   
     I'm with the Doc on this one.  Why doesn't he try the 6MP?  My GI suggested Remicade more than once for me but his associate, who treated me while I was hospitalized, said I most definitely was NOT a candidate for Remicade as I was exposed to the TB virus back in the 60's.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/4/2009 6:52 PM (GMT -6)   
My guess is that the GI is suggesting Remicade first since it can start working faster, whereas 6MP takes a few months. Another thing I've heard of doctors doing is starting Remicade and 6MP at the same time, and then weaning off Remicade to see if 6MP will maintain remission.

(For what it's worth, I tried 6MP first but it's side effects landed me in the hospital just after 3 doses, and I immediately started Remicade)
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 4/5/2009 9:48 PM (GMT -6)   
We were on the fast route to Remicade. Did all the known drugs, from low to high doses in under 10 months. Wish it weren't so, but it was the way it worked(or didn't work). I wouldn't rush there if other options are still untried, because once you build up antibodies to this drug, you are almost out of tricks. Only Humeria left. Get the 6mp working, ramp up the rectals, try the Colazal, and then.....the Remicade. For us, it was the only relief my daughter ever had since the first days.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


kc70
Regular Member


Date Joined Nov 2008
Total Posts : 112
   Posted 4/6/2009 2:08 AM (GMT -6)   
Since my diagnosis in Oct 08 I have tried all the different drugs with little or no effect. I've been on Prednisone since December 08 and I'm desperate to get off it. I practically had to beg my GI doc to let me try Remicade since my quality of life has gone into the toilet (literally). She said she wanted to wait until we were at "last resort" time, and I had to ask her: I'm not working, I'm a single parent, I'm barely functioning, I'm a slave to my diet and my toilet... how much worse does it have to get??

I'm having my first infusion tomorrow and I'm a bit nervous about it, mostly because a) I'm really not fond of needles so a prolonged IV infusion makes my brain itch, and b) my string of failures when it comes to medical interventions really has not given me much cause for optimism. But, from what I've read here and other places, it seems like it has a good chance of helping. So, here goes nothing. No time like the present, I say.
39 year old woman
Diagnosed October 2008

location: Vancouver, BC

Current meds: 40 mg Prednisone, 25 mg Imuran, low-dose antibiotics (Cipro/Flagyl)

Failed meds: Asacol, Pentasa, Imuran (maybe)


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 4/6/2009 8:15 AM (GMT -6)   
My dr didn't waste any time. After trying Canasa, Asocol, Pentasa, Lialda, Prednisone - nothing was working fast enough (or at all). I was deteriorating fast, so because of that, I think he thought I didn't have the few months to wait on more drugs. He got me started with Remicade within 2 months of the flare starting up, and within 24 hours I was showing major signs of improvement. I'm glad I listened to him and didn't wait. It's an idividual decision though. Good luck!
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg, increased in March to 7.5mg/kg (started Aug 2008 - 6 infusions so far, next infusion on 4/30 continuing every 8 weeks); Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate)
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09)
Current Status: Reached remission for a few weeks in October 2008, but symptoms returned after I allowed myself to enjoy wine again.... gave up wine and have not been in full remission again yet. 

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