Haven't posted in awhile/discussion group/remi

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 11/10/2007 1:36 PM (GMT -7)   
Hey everyone.
 
I haven't posted in awhile and wanted to say hello.  I actually got to finally meet some people from healingwell at a Roundtable Discussion Group this weekend in Phiil.  ( I had wanted to visit Keith awhile ago, but he wouldn't let me:))  I am really happy that I went. I was a little hesitant at first but eveyone was really nice.  There wasn't any pressure from anyone and I left feeling like I had contributed some information that might help in the progression of treatment for this disease.  It was also nice to hear, in person, what other people feel is important and how this disease affects them.  Anyway, I really enjoyed myself.  It was nice to  meet all you guys who went and hopefully we can continue to keep in touch.
 
I am doing pretty well.  Still on Remicade but I get a colon. in Dec and my Dr might take me off Imuran.  Says the new info states the imuran doesn't help in preventing antibody production...anyone else get this from their doc???? 
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 11/10/2007 1:49 PM (GMT -7)   
Also, I just went back and reread some of the earlier posts about how some people were wary about the intentions of this group.  I'd be happy to share what the experience was like if anyone is interested.  I wouldn't be scared to talk to this group/people.  They were extremely professional and I trust that the work they and the Pharm. Co. is doing is for the good.
 
Candice
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/10/2007 3:36 PM (GMT -7)   
Hi welcome back :) Yes, I would be interested in knowing what they had to say if you care to share? And it's awesome that you were able to meet up with a few from HW. That's great!
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia, Pro-Bio 
Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


follyism
Regular Member


Date Joined Aug 2006
Total Posts : 157
   Posted 11/10/2007 6:38 PM (GMT -7)   
Hey Candice, good to see you made it home safe. Hi Sherry :)

I was one of the participants in this discussion/focus group on UC and Lialda. It was definitely nice to meet with other people from this forum and other people in general that have UC. Shire did a excellent job with that meeting. It was very informative and it seems like Shire is trying to anchor itself in the UC community in a very unintrustive and helpful way.
All theory, dear friend, is gray, but the golden tree of life springs ever green.

--Johann Wolfgang von Goethe
 
Michael
25/Male/NYC
Diagnosed with UC: July 2006
 


redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 11/10/2007 8:07 PM (GMT -7)   

To answer your Remicade question: my doctor still observes the protocol of giving both Imuran/6mp and Remicade together, and he tells me most GIs in Canada are still of the view that there is enough proof to show that taking the immunosuppresant helps reduce your chance of developing anti-bodies.  However, he also told me that the GIs in Toronto have started to take the opposite view and are now giving Remicade alone.

Consequently, before going on Remicade, I did a bit of research and read the most recent study out that says that immunosuppressants only help a bit a first in reducing your chance of developing Remicade anti-bodies; the study goes on to say the risk of taking the two drugs together (cases of lymphoma only developed in patients taking both drugs) may not be worth the small benefit you may gain.  [I can try to find the study for you online if you like - I just googled 6mp and Remicade.  I believe it is a European study.]

I decided that for this reason, and for other reasons (namely how comfortable I feel taking these drugs should I want to become pregnant again), to go with taking Remicade alone.  My GI supported my decision.

I had my first infusion today.  Fingers crossed!



RedHeadedMama
32-yr old female, diagnosed with left-sided UC in 2002, likely now pancolitis
1st severe flare started post-pregnancy in December 2006
4 x 400mg Asacol 3 times a day
Off prednisone finally!
VSL#3, calcium + D, B-100, iron, vegetarian/whole foods diet
Osteopenia (diagnosed May 2007)


sarah123
New Member


Date Joined Jan 2006
Total Posts : 16
   Posted 11/10/2007 9:08 PM (GMT -7)   
this might be a stupid question -but what does it mean when you say that Remicade might create antibodies?
Sarah, 30F
diagnosed w/ UC 1996
currently on Imuran 150mg
tapering off prednisone--3 weeks to go!
Remicade- 2 treatments so far.


momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 11/11/2007 10:14 AM (GMT -7)   
Candice and Michael - you guys are awesome! Ha Candice you couldn't hide your screen name for long. Now don't go making anyone mad again:) It's so great to feel like I really know some people on here now. And for everyone else, yes the discussion group was a wonderful experience. I'll post more details soon.
Leslie, 30~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
multi-vitamin, calcium


UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 11/11/2007 6:08 PM (GMT -7)   
Oops, missed this thread.  I posted on the other one about our time in Philadelphia.  You all that went keep in touch...
---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC (pancolitis)
Currently in mild flare
2 400mg Asacol 4X day
10mg Prednisone
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 11/11/2007 6:18 PM (GMT -7)   
Hi Michael and Leslie (again) and hello Sherry.

Well, Leslie already got around to describing the meeting with Shire. It was all very impressive as she has said. I wanted to add that I was also impressed by how well all the people were actually actively LISTENING to what the attendants had to say. I think they were really trying to find out what UC patients need and want. It was apparant that these kind of meetings are very necessary because there is no way others are going to understand what we need unless they can really understand what we are going through. It is easy to read about it in a text book, but not so easy to see the emotional consequences and figure out the all-around nature of the disease...

Thank you for the info on the antibody-Remicade correlation "rhmama" Things can change so fast. When I first started getting treatments done, the research suggested staying on the imuran and now it doesn't....we'll see... Good luck with your treatments!!!!


sarah,
There is a chance the body can build up antibodies against Remicade. It's still a relatively new drug and they are trying to figure out the best way to try and prevent it. At first they thought that the imuran, 6mp etc would help prevent the excessive production of antibodies to Remicade, now I guess it is more suggesting that most people who have a problem with the antibodies building up do so bc they stop taking it for a long period of time. This is one of the reasons that you hear things like "once you are on it, you stay on it" -For fear of building up a resistance to it. I am sure if you do a search on this site you can find threads better explaining this in detail.
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 11/11/2007 6:50 PM (GMT -7)   
Oops!!  Hi Nathan too!!!  I didn't know that was you!:)

 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 11/11/2007 6:50 PM (GMT -7)   
I'm pretty ignorant on most of this. My new doc (who is SO loved among his patients) has everyone stay on Imuran for 8-9 months when they start remi and then get off of it. He was pretty insistant for me to get on it for that period of time at least.
dx 4/05 with pancolitis UC after birth of my second child... meds worked randomly
SCD and vit e enema remission for 18 months and had another drug free baby 10/06
Let flare get out of control and even steroids wouldn't work 7/07 - docs wanted surgery
lialda x4 daily and started remicade 10/26/07
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 14, 2017 10:10 AM (GMT -7)
There are a total of 2,905,351 posts in 318,856 threads.
View Active Threads


Who's Online
This forum has 158211 registered members. Please welcome our newest member, E5M.
334 Guest(s), 14 Registered Member(s) are currently online.  Details
Michelejc, SayItAintSo, BnotAfraid, Lapis_29, PeppermintTea, Artist Mark, Gemlin, Radi, AnxietyKelller, E5M, Hardlyrob, Szabo246, RocketMan12, wjstreetjr