If you had always been able to remain in remission and 2 doses of Remicade put you back

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/3/2009 3:19 PM (GMT -6)   
would you stay on Remicade? I was in remission with colazol only for 4 years then I stopped taking it due to hair loss and now I'm in my most
serious flare. Since I've been on prednisone and it hasn't worked. I had the first infusion of Remicade and I"m much better. I'm just wondering if
it gets me into remission that quickly should I stay on it or take my chances and quit?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/3/2009 3:26 PM (GMT -6)   
Don't quit. It's not a cure, it's a treatment.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/3/2009 5:39 PM (GMT -6)   
I second that. It works by supressing TNF, which apparently causes flaring in some of us. It's totally up to you, but I won't stop it until I have to or until it stops working. But then, nothing else ever put me into remission.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/3/2009 6:12 PM (GMT -6)   
Yeah, I don't even see the use of going on it unless your gonna stick with it. Stopping it may elimate that type of treatment permanently.
Proctitis DX 1999, Pancolitis DX 2008
Immuran
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3+Ca/1000mg DHA


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/3/2009 6:29 PM (GMT -6)   
Most doctors recommend that you stay on it indefinitely. But my GIs have said that I can try to wean off of it and see if I can stay in remission with just Colazal. Which sounded like a good option when I was scared to death of taking Remicade. But now that I'm living a semi-normal life and have gotten comfortable being in remission, I'm not sure I want to give up Remicade and risk the chance of having to get surgery. And yes, there are more chances that it will not work after stopping it.
 
I've heard of doctors starting Imuran or 6MP at the same time as Remicade, and then getting off the Remicade a few months later when Imuran/6MP has kicked in.
 
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
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/3/2009 6:49 PM (GMT -6)   
Stay on it! I personally am scared to go off my Humira because of how flared I was when I was first diagnosed. I do not want to be in the hospital unless I have my babies. If it's working for you keep doing it.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/3/2009 10:38 PM (GMT -6)   
Stay on it....Remi is a maintenance med too.
Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


purephase
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/3/2009 10:51 PM (GMT -6)   
Yeah, I have to agree with these guys. I was on it for a few years and I never felt better. I wasn't told by my doctor that once I stopped, I could no longer continue. I stopped because my deductible was so high and the hospital was charging my insurance company over $14,000 per injection! I stopped, now Im on Sulfasalazine which is OK, but nowhere as effective as Remicaid. Stay on it, you'll be glad you did.

Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/4/2009 12:14 PM (GMT -6)   
I think I may already be back in remission and I've only had one infusion. Could it really be the Remicade that put me there that quickly? I am due for my 2nd infusion this week, but I have no blood and I'm down to 1 normal bm a day - still a bit of urgency but I've got my energy back and I'm feeling good for the first time in 3 months. The doctor was very hesitant to start me on Remicade but since I was hospitalized twice in the last month with prednisone making little to no difference, he gave me my first Remicade a week and a half ago. With all of the infection/lymphoma risks, I guess I just want to be sure it's the Remicade that is what made the difference! I wouldn't think it could work that quickly?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/4/2009 12:22 PM (GMT -6)   
Yep, it could very well be. The next day after my infusion I felt the same way; I couldn't believe the difference. I actually had some energy again and there was no blood or mucous and hardly any urgency. It took a long time to get over my brain thinking I was going to have an accident any minute...wasn't even sure if I remembered what a real bowel movement felt like. Enjoy the good feelings! One other thing; every time I have an infusion I feel great the next day. I call it my juice...it gives me a lot of energy! Remembering back though, I sometimes started losing energy just before my next infusion...so that might happen to you also. Everyone is so different.....

Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


BlizzMan
Regular Member


Date Joined Mar 2006
Total Posts : 40
   Posted 5/4/2009 1:34 PM (GMT -6)   

While I am not a real fan of the whole PROMETHEUS testing due to the cost and the vagueness of some of the results.  The Serum Infliximab/HACA Measurement Catalog # 3130 can give you some real numbers to help determine the best way to manage your treatments.  I had lost response to Remicade and requested that my HACA (Human Anti-Chimeric Antibodies) levels be determined.  You can Google the catalog number and get an informative pamphlet.  

 

The level of antibodies to the mouse protein used in the production of Remicade can be used to determine if you should increase the dose or determine the potential for adverse impacts due to high levels of antibodies.  I stopped Remicade do to reduced effectiveness.  My doctor was hesitant to restart Remicade after Humira was ineffective.  I requested that the levels of HACA be determine prior to making a decision to restart Remicade instead of just going with the generally accepted practice of not going back.  Well the HACA levels were low and I restarted Remicade and have had a great response.  

 

Of course, the decision to stay or go will be have to be made by you and your doctor but it seems like there is more to consider than just the standard response of once you stop you can never go back.


Blizzman
 

Diagnosed 1996

Meds
Remicade, Prevacid, Azathioprine, Azulfidine
 
Supplements
Iron (ferrous sulfate), Omega 3, Vitamin E, C
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/4/2009 3:58 PM (GMT -6)   
Huh?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/4/2009 7:26 PM (GMT -6)   
Lonielane said...
Yep, it could very well be. The next day after my infusion I felt the same way; I couldn't believe the difference. I actually had some energy again and there was no blood or mucous and hardly any urgency. It took a long time to get over my brain thinking I was going to have an accident any minute...wasn't even sure if I remembered what a real bowel movement felt like. Enjoy the good feelings! One other thing; every time I have an infusion I feel great the next day. I call it my juice...it gives me a lot of energy! Remembering back though, I sometimes started losing energy just before my next infusion...so that might happen to you also. Everyone is so different.....


I'm still waiting for insurance approval but I guess I won't go against it at this point especially after hearing it is possible for it to work that quickly! I know they did a flex sig before the remicade and the doctor saw NO difference in my colitis after 6 weeks on prednisone.

I just wish I wasn't so nervous about the Remicade!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/4/2009 7:27 PM (GMT -6)   
BlizzMan said...
While I am not a real fan of the whole PROMETHEUS testing due to the cost and the vagueness of some of the results.<SPAN style="mso-spacerun: yes"> The Serum Infliximab/HACA Measurement Catalog # 3130 can give you some real numbers to help determine the best way to manage your treatments. <SPAN style="mso-spacerun: yes"> I had lost response to Remicade and requested that my HACA (Human Anti-Chimeric Antibodies) levels be determined. <SPAN style="mso-spacerun: yes"> You can Google the catalog number and get an informative pamphlet. <SPAN style="mso-spacerun: yes">

<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p> </o:p>

The level of antibodies to the mouse protein used in the production of Remicade can be used to determine if you should increase the dose or determine the potential for adverse impacts due to high levels of antibodies.<SPAN style="mso-spacerun: yes"> I stopped Remicade do to reduced effectiveness.<SPAN style="mso-spacerun: yes"> My doctor was hesitant to restart Remicade after Humira was ineffective.<SPAN style="mso-spacerun: yes"> I requested that the levels of HACA be determine prior to making a decision to restart Remicade instead of just going with the generally accepted practice of not going back.<SPAN style="mso-spacerun: yes"> Well the HACA levels were low and I restarted Remicade and have had a great response. <SPAN style="mso-spacerun: yes"> <o:p></o:p></FONT>

<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'"><o:p> </o:p>

<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'">Of course, the decision to stay or go will be have to be made by you and your doctor but it seems like there is more to consider than just the standard response of once you stop you can never go back. <o:p></o:p>


I'm not sure I understand this, but I've only had one treatment so I'm also not sure any kind of testing would be effective or worthwhile at this point.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


BlizzMan
Regular Member


Date Joined Mar 2006
Total Posts : 40
   Posted 5/5/2009 5:57 AM (GMT -6)   

I guess what I was trying to say was that the standard response from some doctors is once you stop Remicade you cannot go back.  While there is a basis for that approach due to the build up of antibodies, any decision to stop or restart Remicade should be based on actual factual data that can be obtained from the referenced testing.

 

The standard answerer of once you stop you cannot restart should be evaluated and discussed with your doctor before a decision is made.  If the side effects of the treatment are a concern, then you should not be frightened into sticking with the treatment. 

 

Additionally, if you do want to restart the treatment then the testing is a good way to measure the levels of antibodies and determine if the treatment has the potential to be effective for the expected duration between treatments or if it has potential to cause adverse reactions.


Blizzman
 

Diagnosed 1996

Meds
Remicade, Prevacid, Azathioprine, Azulfidine
 
Supplements
Iron (ferrous sulfate), Omega 3, Vitamin E, C
 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/5/2009 6:31 AM (GMT -6)   
BlizzMan said...
<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'">I guess what I was trying to say was that the standard response from some doctors is once you stop Remicade you cannot go back.<SPAN style="mso-spacerun: yes"> While there is a basis for that approach due to the build up of antibodies, any decision to stop or restart Remicade should be based on actual factual data that can be obtained from the referenced testing. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'"><o:p> </o:p>

<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'">The standard answerer of once you stop you cannot restart should be evaluated and discussed with your doctor before a decision is made. <SPAN style="mso-spacerun: yes"> If the side effects of the treatment are a concern, then you should not be frightened into sticking with the treatment.<SPAN style="mso-spacerun: yes">

<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'"><SPAN style="mso-spacerun: yes"><o:p></o:p>

<SPAN style="COLOR: windowtext; FONT-FAMILY: 'Times New Roman'">Additionally, if you do want to restart the treatment then the testing is a good way to measure the levels of antibodies and determine if the treatment has the potential to be effective for the expected duration between treatments or if it has potential to cause adverse reactions. <o:p></o:p>


That makes a lot of sense! Thank you!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09

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