Question on meds

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queeniefosho
New Member


Date Joined Aug 2007
Total Posts : 19
   Posted 8/30/2007 12:39 PM (GMT -7)   
I have active Crohn's, mainly perianal and some lower gi. I am probably going to start on meds towards the end of Oct., after my GI does yet another colonoscopy. My question is this, because I have so much problems with the perianal part of things, she is thinking that other treatments (imuran, etc) won't help me. So, she wants me to take Remicade. I am terrified of the side effects (lymphoma, etc). Is anyone on here taking Remicade?
Please help and give me more information on Crohn's meds.

descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 8/30/2007 1:24 PM (GMT -7)   
Hi... i actually have the same situation that you do. I have Crohns in the TI but I mostly have perinal issues, a fistula and 2 fissures. My intestinal issues seem to be under control with the Pentasa I am taking. I had the same reservations about the Remicade as you seem to have and from what I have spoken to my doctors about and the research I have done, Remicade is the only medication that seems to help the perianal problems. Most other drugs are used to treat intestinal issues but if you are like me and have that pretty much under control, your options are very very limited. I have asked my doctors about it over and over and over again and it all leads to the same result, the Remicade. I should be getting my first infusion in about 2-3 weeks and from what I have heard from everyone on this site, it's a wonder drug! My fissures are so bad that I went into the doctors office ready to have surgery the very next day and she said no way. I either start the remicade or I deal with my issues. I tried to stay away from it for as long as I could but since things are so bad with the fissures and the fistula I said OK. The side effects are very scary especially since Lymphoma runs in my family but I can't continue to live my life this way so I weighed the risk with the reward and for me it's completely worth it. I would love to feel "normal" for the first time in my life since I have been dealing with these symptoms for the last 10 years! Hope you feel better soon! =)
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY!
3 Lialda/day
Had to stop Flagyl because of numbness in my toes!
Seton Drain currently in...


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/30/2007 1:40 PM (GMT -7)   
I also have many colon/rectal issues. I am imuran and remicade, for almost 3 years now, and it has been a great combo. No side effects, and I do know that imuran helps because once I got in my theraputic dose range, I could tell a big difference in the way I felt.

Have you ever tried any rectal meds? Also, flagyl works well with me also. Good luck!

queeniefosho
New Member


Date Joined Aug 2007
Total Posts : 19
   Posted 8/30/2007 3:26 PM (GMT -7)   
I haven't tried rectal meds, but I did take a course of flagyl about a year ago to help with a fissure. I don't have much problem w/ drainage right now, but I do have a persistant large and sometimes painful skin tag that won't go away. My gi doc is hopeful that the remicade will shrink it once and for all. I wanted to have it removed surgically, but my doc said that due to the Crohn's it wouldn't heal and I would be in worse shape than with it.
I'm so thankful that I found this board. This is such a nasty disease and so few people understand it. Bless you all!

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 8/30/2007 3:43 PM (GMT -7)   

My first infusion was awful, anti serum sickness but since the second I am actually doing better so maybe it is working for me.  I guess it takes a long time until they know it has done some good.

tongue
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/31/2007 5:31 AM (GMT -7)   
Hi I am on the Rem. my GI said the lymph. thing was about a 2% risk factor .I am doing good on it and many of us are it healed my Fistula and that was a big relief. It is not hard to get done and so far very little sideeffects. We all weighed the sideeffects and for many of us it was something we wanted to try. Hoping your treatments bring you into remission. lol gail

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 8/31/2007 6:08 AM (GMT -7)   
Hi I am on Remicade for over 2 years and no-side effects. I am always having blood test done.
I hope the Remicade does wonders for you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


queeniefosho
New Member


Date Joined Aug 2007
Total Posts : 19
   Posted 8/31/2007 8:24 AM (GMT -7)   
Are the remicade injections painful? I am a big wuss when it comes to needles, but I'm getting better since this Crohn's mess has begun. It seems like I'm always getting blood drawn these days! lol

queeniefosho
New Member


Date Joined Aug 2007
Total Posts : 19
   Posted 8/31/2007 8:24 AM (GMT -7)   
Are the remicade injections painful? I am a big wuss when it comes to needles, but I'm getting better since this Crohn's mess has begun. It seems like I'm always getting blood drawn these days! lol

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/1/2007 7:00 AM (GMT -7)   
Hi I get the IV put in my hand They warm my hand with a blanket first sometimes tap my viens. Once the IV is in it doesn't hurt .I get dinner there too which passes the time .I too did not like needles but much better then pains in the stomach and intestine problems. I am sure you will do just fine with your treatments let us know how they go .lol gail
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