interesting remicade tidbit

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Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 5/29/2008 10:59 AM (GMT -6)   
 
well I think most of us know this, but it is interesting anyway!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


jujub
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Date Joined Mar 2003
Total Posts : 10407
   Posted 5/29/2008 1:10 PM (GMT -6)   

That's what I have - complete mucosal healing. My last colonoscopy was absolutely normal, my GI said he couldn't even tell I'd ever had ulcerations.

No, it's not a cure. If I go off the Remicade, it will come back. But for me, for now, it's complete control, and I'm darn happy to get it.


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lonie
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Date Joined Feb 2005
Total Posts : 6447
   Posted 5/29/2008 2:07 PM (GMT -6)   
No not a cure, but I believe it's done the same for me; actually I think that's why my doc was rather aggresive in getting me going on Remi. I thank him for that.

Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 5/29/2008 2:42 PM (GMT -6)   
good to know. I don't know if I am moderate or severe, I now have pancolitis, I know I was considered mild before when it was proctosigmoiditis.

I may be on the remi train pretty soon.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/29/2008 5:40 PM (GMT -6)   
I also have pancolitis but unfortunatley was given the recommendation not to take remicade due to my history w/ pituitary tumor... What a bummer!
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 5/29/2008 7:27 PM (GMT -6)   
It certainly has helped me, although I've come out of remission while on it. My doc said long-term use of Remicade is not good so I am already worrying about what we can do once I have to get off it. I've been on it for over a year and I've come out of remission at least three to four times including right now. My disease is stubborn
and they've tried everything so who knows. I would recommend Remicade though.
34 year old female
Dx'd 5 years ago
Current Meds: Remicade/6 weeks, Prednisone, Prevacid, Sustenex, Lialda, Lexapro, Synthroid, Iron, vitamin, Fish Oil
Expecting first child 12/08 via gestational surrogate


RMA
Regular Member


Date Joined Aug 2004
Total Posts : 79
   Posted 5/29/2008 9:02 PM (GMT -6)   
Hello
Last year i had a c-scope in May... i had been in year long flare
My Doc told me that i was the worce case of colistis he had ever seen
Was bleeding everyday ....15-22 BM's a day a lot of pain ..i started Remicade in Oct 2007 ..the bleeding stop ....Bm's drop from 15-22 to
7-15 a day a lot less pain ..i had a c-scope last month a lot of that had heald up ....i am not in remission but it is a lot better my quality of life has gotten a lot better ....it is the remicade ...because the other Drugs i am on were not doing anything ..
REMIDCADE 10-02-07
generic colazal 3x3 a day

________________
mercaptopurine 50mg 1 1/2 a day


allopurinol 100 mg
rowasa enema pm generic
multi vitamin
folic acid
fish oil

dx 2004 uc


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/29/2008 9:06 PM (GMT -6)   
Is it true that once you start Remicade you cannot stop because it will not be effective again if re-started?
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/30/2008 6:11 AM (GMT -6)   
Mbx5, about half the people who stop Remicade are not able to go back on it either because they have allergic reactions when they try to resume treatment or because it isn't effective the second time. I have heard of some docs using it as a short-burst drug, maybe three infusions, to induce remission. I guess only time will tell if that's a good strategy or not.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 5/30/2008 7:41 AM (GMT -6)   
angeltt- your doc said that remi wasn't good long time?

Has anyone else heard that?

I recently met a woman who has been on it for ten years with no side effects. She goes to the same Gi I do.

Just curious if anyone else has heard this from a doc.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 150mg Imuran, no more pred after two years!!!!
Prontonix once daily for acid reflux, zofran twice daily for nausea
Remicade started 3/1/08...just had 3rd infusion


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/30/2008 7:47 AM (GMT -6)   

I think like any other drug, they would like to be able to wean you off of it at some point. My doctor talks vaguely about eventually dropping my dose back down to 5 mgs/kg, or lengthening the time between infusions, to see if we can taper off Remicade. I hear that & I think NO WAY! For me, it's working better than anything else- I have no intention of ever coming off it unless it totally loses effectiveness. My doctor knows this too- I think that's why he's vague when we talk about it! It's been about 2 years of infusions for me, & things have been mostly smooth. I haven't heard of any specific long-term risks associated with it, not from my doctor or from other resources.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 

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