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LibraryChick
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/12/2009 9:43 AM (GMT -6)   
Hi.  Sometime lurker, first time poster.  I just got a call from my GI saying I start my first Remicade infusion on Monday, and I'm pretty nervous about it.  I was diagnosed with UC in 2004, and I've been miserable with it since then.  I've pretty much tried just about everything, from steroids to 6mp, and recently I've started having panic attacks in places where a bathroom is not close by.  I hope Remicade is the thing that puts me in remission, but I'm really scared of all the side effects.  Any advice?

hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 5/12/2009 11:20 AM (GMT -6)   
I was really glad I did it. Remicade helped but I am still having problems. As far as the panic attacks - I have had good luck with anti-depressants( see sig) but when the doctor gave me klonpin it made my UC worse so be careful what you take. I did a lot better when I started going to school from home and working from home but that isn't an option for everybody. There isn't any side effects other than your risk is raised for a rare form of cancer. If you stop the 6-mp then I don't think your risk really goes up much. Other than that you might have an allergic reaction but they are rare and the nurse will be right there the whole time.
Jessica 27/F
Remicade
Apriso/4 pills
Citalopram 20 MG
Align


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/12/2009 12:58 PM (GMT -6)   
Welcome to HealingWell, LibraryChick! I'm going for my infusion tomorrow; it's officially been four years now that I've been doing the infusions, and I've never felt better. I haven't had any side effects, and live a very active lifestyle; something that wasn't afforded to me when I was so sick with UC. If you want to read more posts about Remi, go up above the blue control panel bar and do a Google Custom Search for Remicade. Take care, and good luck with the infusion...let us know how it went. Again, welcome!
Carol

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


LibraryChick
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/12/2009 2:13 PM (GMT -6)   
Thank you hana24 and Lonielane for your welcomes and your responses.  I will do some more digging about Remicade, though it is nice to hear some people have had positive responses to it.  I've already made an appointment with my primary care about posibly starting some medication for the occasional panic attacks, but I feel weird asking for it because I've never had a problem with these things in the past.  Are panic attacks common for people with UC?

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/12/2009 3:32 PM (GMT -6)   
I remember having anxiety too when I had such bad urgency and pain...needed to know where the heck the restrooms were at all times. Also, I had a hard time letting people know how sick I was so I think I created that anxiety too. I can remember after getting into remission with the Remicade that it was hard to break the mind over colon battle; meaning my brain kept thinking I was going to have an accident even though I was fine.

Carol

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


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/12/2009 3:39 PM (GMT -6)   
I think anxiety is pretty common with UC. I didn't leave the house for much other than work when I was really sick...I didn't want to poop my pants in a store! I was diagnosed with postpartum anxiety shortly after my son was born, but by that time I was also in the midst of my first (really bad) flare, but hadn't been diagnosed yet. I'm sure the UC made my anxiety worse than it would have been, but I think I would have had anxiety issues regardless.

Anyway, I've been on Zoloft since my diagnosis of PPA, and I've chosen to stay on it for the next little while, because it made a huge difference for me and I'm taking the lowest possible dose. I've got some potentially stressful things coming up in the next few months and I'll try going off of it once that has passed, but if it turns out I start having issues with anxiety again, then I'll go back on it. I'm really glad that I was on it when I was diagnosed with UC. I really think it helped me deal with the diagnosis.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 5/12/2009 4:18 PM (GMT -6)   
My symptoms, while not completely gone, have been MUCH abated by the Remicade. My mornings are still a little rough, and now again I get some bleeding, but no pain, no mad rush for the bathroom while out and about during the day. The Remicade is buying me some time, but I think ultimately I will end up having the surgery. Right now I am trying to save a few months living expenses to cover me shutting down my business while I recover then building it back up.

Some people on the boards report feeling fatigued after their infusions, but I never have had that. Your first infusions will take up to four hours, so bring along reading material, maybe a snack, your iPod or Zune or whatever MP3 player you like. I get my infusions every six weeks, although eight seems to be the norm. I've had 15 and my infusions take about two and a half hours.

Some people here obsess about every symptom they feel and attribute it to the infusions, other don't think much about it and just get on with things. It's natural to obsess about it all for the first infusions, but if you are still uncomfortable with the medication after you've been on it for awhile you may need to rethink it or perhaps try a little therapy. To tell you the truth, I was VERY hesitant to try it and extremely nervous, and my next post after my first infusion was something on the order of "gee what a big baby I was, that was a piece of cake!!"

ALL medications have risks, but you need to weigh the risks and benefits for YOU. Remi has been in use for a quite a little while now and doesn't seem to be as risky as first thought. If it works for you even somewhat you will get your life back. My last colonoscopy showed my colon just about healed, it's just the final few centimeters giving me all my trouble now. The improvement in my symptoms and my daily life has been phenomenal though, even if not 100%.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/12/2009 4:27 PM (GMT -6)   
I do remember when I started the Remi of being a little too conscious of germs, etc. and thinking I'd come down with everything under the sun, but that hasn't happened either. Maybe it's become so common place for me to make sure I wash up etc. that it hasn't happened knock on wood. The infusions have also just become a part of my routine; every eight weeks and I consider it part of taking care of my health; just as you would taking any med.

Carol

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


LibraryChick
New Member


Date Joined May 2009
Total Posts : 13
   Posted 5/13/2009 2:52 PM (GMT -6)   
Thank you all so much! I feel better knowing I'm not the only one going through some of what I'm going through. I should have started participating in this forum much sooner. I appreciate the advice and kind words. :)
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