Sputtering on Remicade, "here we go again" venting

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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/9/2008 11:26 AM (GMT -6)   
I've only had 3 infusions but I am already re-flaring somewhat while on both pred and remicade.... I have of course seen some remi users post here that it took 5 or 6 infusions to get a meaningful remission, so as usual ("here we go again ") I guess I need to hang in there a bit- well unless I just bite the bullet.  But pummeling myself with all this chemotherapy has certainly got me thinking about throwing in the towel and going for a j-pouch.  However I would prefer to think about that decision from a safer, more stable place, not to mention not undergoing surgery with active disease.   Anyway, I did respond within a week and a half with some success on remi- it just wasn't that robust an effect and it certainly didn;t last 4 weeks.  Also, the sunflower butter on my spinach and sunflower seed diet attempt flared me, it seems.  And my doc is not upping my remi dose just yet but is thinking about it depending on how this latest infusion works or doesn't work.  I kind of miss my worms too... had some dampening from TSO (pig whipworms) for over a year, on and off, but it didn't prevent me from flaring as I tried to taper off pred either, it is horrendously expensive and not covered by insurance,  and I'd have to take it 'secretly' now as the docs are terrified of me being on TSO and biologics at the same time.  However, if it wasn't so expensive and still not fully effective for me, I'd pair it up with remi in a heartbeat.  Anyway, mentally i am trying to give myself a few more months to see how things go before moving into high gear on surgery... but I guess I should start l;aying some groundwork and interviewing surgeons at this point.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 15 mg pred, 100 mg Imuran
TCM, Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/9/2008 12:11 PM (GMT -6)   
Have you had a c-scope after starting Remicade? I had 3 infusions and still wasn't doing much better, so I scheduled surgery. But when I had my c-scope, it showed that everything was healed except for a few centimeters, which was taken care of with rectal meds.
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/9/2008 12:22 PM (GMT -6)   
No scoping planned any time soon. Assuming I still have a colon to scope, which looks 50/50 at best, then I am going to wait until a year from my last scope (surveillenace) as they really do a number on me. If I can be in remission it may not be reflare me, but with active disease I know any scope is going to be a killer. If things settle down though (maybe it will take 10 mg/kg instead of 5) and I am able to get of pred, then I may get a fecal calprotectin test to check for active disease, as well as CRP tests that I do from time to time, in between. But really, for me it is all about symptoms, especially pain, or the lack of them.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 15 mg pred, 100 mg Imuran
TCM, Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/9/2008 1:20 PM (GMT -6)   
Most of us who have opted for surgery did it while out of remission. Most of us who made the decision did so because after a period of time we were not able to gain remission and felt we never would. I really don't know too many pouchers who opted for surgery when their UC was behaving. Those that did opt for surgery during remission did so because they were diagnosed with dysplasia. I think you are at the perfect point for starting the research. It took me about a month of reviewing surgical options to make the decision to proceed. Talking about it helps and of course I recommend visiting www.j-pouch.org You can meet several Remi-failures there who can share their stories with you.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/9/2008 9:03 PM (GMT -6)   
Thanks Sue. yeah, I was active over on the (excellent) j-pouch.org site a year ago for awhile and then backed off while I enjoyed partial success with pig whipworms (TSO) but at this point I need to go back again and by all rights should be spending mroe time there than here (or at least 50/50). I learned tons over there mind you so I am already up on all the options, pros/cons, risks etc etc ... I just am trying to time this out not to declare Remi a failure too quickly. I would also at least try Humira and Refaxamin first before throwing in the towel, though I did get some initial response to Remi which is, perhaps, cause to wait a month more or so for progress.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 15 mg pred, 100 mg Imuran
TCM, Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 12/9/2008 9:12 PM (GMT -6)   
I'm with you, darlin'. We(daughter) had the 3rd infusion of Remi 3 weeks ago, with small successes. Had a colonoscopy/sigmoidoscopy( actually after week 5 of the study for Remi that she is doing), and it actually showed improvement in the colon. Not enough to feel great or put her in remission, so we too are at a loss. Enough improvement to stay in the study though. Remi isn't approved for UC kids yet. We 'll have to see what the doc says about increasing the does to 10mg per, or increasing the frequency. Can't give up yet. Maybe the next infusion is the charm! Hang in there. Can't cope with the surgery option yet.
K
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers, four x this yr. Low residue diet still, and still having problems.
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
On 2nd infusion of Remicade, and still on all of the other drugs., except Flagyl and Pred. Better, not healed.


vega19
Regular Member


Date Joined Sep 2008
Total Posts : 91
   Posted 12/9/2008 9:54 PM (GMT -6)   
I went into remission by the 3rd infusion but started flaring again after my 5th infusion and had to go back on pred. I've had 2 infusions since then and have noticed improvement but pretty sure that it's due to pred and not remicade. As I'm down to 10mgs of pred now I see things softening up again. I'm on the high remi dose too! Go figure. My GI feels that I may have built up a tolerance to it.
31 year old female diagnosed with UC (entire colon) Feb 2008
(4) 400mg Asacol 3x a day
Remicade 10mg/kg every 8 weeks
Omega 3 supp, calcium supp, VSL 3
Prednisone 10mg (tapering 2mg every week)


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 12/10/2008 3:55 PM (GMT -6)   
I don't think Remicade has helped me... I have had 11? infusions and I was going to stop but the doctor put me on 6mp and I am going to take both. I never reached remission with Remicade. In fact, I have contined to bleed, have 8-15 movements a day, mucous, etc.. well you know what I am talking about.
 
 I know how you feel.  As I have posted before, i am very near making the final jump into having surgery. My doctor is ready to send me to the surgeon now though. I am reluctant to give in yet, even though it is pretty evident that nothing is working.
If 6mp doesn't start working within the next 2 months I will go to the surgeon, but I am soooooooo scared.
 
Like you, i will continue to research the j pouch.
Jackie, 43

Pancolitis, DX October 06

Lexapro, colazal 3x3, Sythroid, Protonix, Flagyl

10 infusions of Remicade- doesn't work
tried 6MP - taken off because of health concerns

tapering prednisone at 25 mg
Added 6MP- November 25th

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