First Remicade treatment & already in Remission!

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shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 7/1/2009 7:11 AM (GMT -6)   
 wanted to take a moment to say how excited I am about my first Remicade treatment! I was very scared about starting it... not because of the actual IV procedure but because I was afraid it won't last long for me and would give me either no remission or not very long. I did my 1st infusion last week and the next day I had normal poop and what seemed to me to be alot more energy. I could actually leave the house which I have not been able to do!! I was using the bathroom more than 30 times a day which made me really depressed because I couldn't even go to the grocery store without the fear of or without having accidents. My marriage seemed to suffer because my husband is very active and I was house-bound. I am only 1 week into it and have my next treatment next week. I am excited about being able to enjoy a long 4th of July weekend with my husband on our boat - which I haven't been able to do for obvious potty reasons. I am hopeful that this will continue to work for me and want those who are considering this treatment option to talk to your doctor about it. I am very glad that I did. I have my 30th birthday coming up next month and I for the moment I feel like I am getting my life back!! I know this is very early but if even for the moment, I am so thankful.
  yeah
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/1/2009 7:31 AM (GMT -6)   
That's wonderful!! Enjoy the time on your boat - how fun!
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Trying Applied Kinesiology & supplements.


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/1/2009 7:53 AM (GMT -6)   
Wow, good for you!
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 15 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/1/2009 8:03 AM (GMT -6)   
Great news, and make the most of getting into remission!
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 9:00 AM (GMT -6)   
Great news Shortstuff! I too was in the same "boat" as you; and the next day after my first infusion I felt the same way; more energy and formed bms...and no blood. And it's been that way since. Fingers crossed for you; have fun this weekend, and keep us updated on how you are doing. :-)
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/1/2009 10:33 AM (GMT -6)   
Great!!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


LibraryChick
New Member


Date Joined May 2009
Total Posts : 13
   Posted 7/1/2009 11:57 AM (GMT -6)   
Good for you!  My third treatment is in a couple of weeks, and it really does seem to be helping a great deal for me as well.  Yay!
Diagnosed 2004
 
Colazal
Prilosec (wicked heartburn)
Remicade - 1st treatment 5/18/09
 


Hopeful4uc
Regular Member


Date Joined Jun 2009
Total Posts : 90
   Posted 7/2/2009 8:42 AM (GMT -6)   

Awesome!! I had my first Remi infusion on 6/23.  I got great results, not quiet into remission but in the right direction.  I too have alot more energy!  I have no bleeding, but a little D, only about 2 x daily.  A huge difference.  I can tell it's working.  Can't wait for the next loading dose and see what response I'll have after that.  Enjoy the boat during the holiday weekend.  We are so thankful for the meds coming out. The scientists are working hard for us....so many people afflicated with this disease. 

Hopeful4UC


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/2/2009 9:39 AM (GMT -6)   
Hooray for shortstuff! I had my first remicade infusion 6/22 and although I didn't have a great reaction like you, it does seem to be helping a little. I have high hopes for the second dose this monday. Have a great fourth of July!!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/2/2009 10:22 AM (GMT -6)   
Its a big relief when something finally suits our body....wish u all the luck! Happy for you :-)
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 77 mcg in June'09 :-(


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/2/2009 10:23 AM (GMT -6)   
Sweet!
UC Forum Co-Moderator
I am not a healthcare provider. I am offering support and guidance based upon my own conclusions and/or research. ALWAYS consult with a qualified healthcare provider.


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 7/2/2009 11:17 AM (GMT -6)   
It looks like AmyWaffle, Hopeful4uc & librarychick, we all look to be starting about the same time... keep us all posted on how your treatments go... it may be the encouragement someone needs to make the choice to start the infusions. I am sooooo thankful to have this forum ~ It's the posts that I read daily that make me strong enough to fight this disease and to not let it overcome me :)
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;
Started Remicade 6/25/09


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 7/2/2009 1:27 PM (GMT -6)   
The same thing happened to me! Enjoy the good health!
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, Remicade (3rd infusion 6/8/09)

Discontinued: Prednisone, 6MP


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/2/2009 6:43 PM (GMT -6)   

Hey Shortstuff, you can include me in the group of first time Remicader’s. I got my first infusion on 06/23.  I think I have improved a little but nowhere near remission. I am hoping the second infusion on Tuesday the 7th will do the trick. Let’s keep the faith.


Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/4/2009 2:13 PM (GMT -6)   
I've had three infusions, and it put me in remission immediately. What a tremendous relief! I'm so glad to hear it's working for others. My doc has had people using it successfully for about 10 years.

I'm juggling a lot right now but can still sit back and think, wow, life is so much easier now.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 7/7/2009 6:54 PM (GMT -6)   
Yayyyyy! So glad that we have great success stories to share! I would be guessing that diaper man is getting some zzzz's today which is well needed :)... I hope you are feeling even better tomorrow. I go back tomorrow for my 2nd infusion and I am so excited!!! I feel like such a goofball and my family thinks I'm nuts because I am actually looking forward to it! I had such a great long weekend on the boat and ate whatever I wanted (within reason, of course) and still feel great. I don't think I could express how excited I am with any more exclamation points - LOL

I'm so thankful for having you all here... what a nice group who truly understands.
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;
Started Remicade 6/25/09


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/8/2009 7:28 AM (GMT -6)   
Hey shortstuff -- I too look forward to my infusions as it gives me some good energy the next day! I have one today and I can actually say this is the first time in a long time that I'm feeling as if I really need it. I'm zapped of energy this time around. My boss was very nice yesterday; I told him Wed. is my infusion day and he said, "Great! You'll be getting the energy juice!" And then he wanted to know all about it. So, have a good infusion tomorrow!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/8/2009 8:10 AM (GMT -6)   
I'm over three years into it, and still doing great. I recently had major surgery without a blip. I hope all of you have results as good as I've had.

Like, Carol, I look forward to my infusions. It's a day of relaxation followed by increased energy!
Judy
 
Ulcerative colitis forum co-moderator
 
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"
 


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 7/8/2009 1:46 PM (GMT -6)   
Just got back from the GI today.  He wants to start me on Remicade.  I have to get off the prednisone.  I am a little scared of it but after reading all the posts I feel better.  I am leaving for vacation next week so I won't start until the following week.  I hope it works. 

shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 7/8/2009 2:56 PM (GMT -6)   
Hi Boxermom2!
 
I just got back from my 2nd infusion and wanted to share with you what to expect. The whole process lasts just over 2 hours and you are so CLOSELY monitored. They give you Tylenol and Benedryl. The Benedryl makes you sleepy and helps you to relax. The Tylenol keeps you from having any pain. I can relate to you being on pred and all the nasty side effects that go along with it. I think the rest of us who replied to my first posting feel good about making the decision to start the infusions. Enjoy your vacation and let us know how you feel after your first dose!! Safe travels!! smilewinkgrin
 
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;
Started Remicade 6/25/09


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/8/2009 6:56 PM (GMT -6)   
Thanks Shorstuff. I did get some good zzzz's during my second infusion. I really needed to catch up. I didn't realize the energy boost you get after the infusion. Lets hope the infusions start working soon.
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/8/2009 9:46 PM (GMT -6)   
Yeah, that boost is awesome isn't it?! Today I had my infusion and all the pain went away, had one big bm and I'm good to go. I feel so much better!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/9/2009 10:40 AM (GMT -6)   
That's great for you, I hope it sticks!
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements

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