Just looking for someone in the same boat....

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Ever_Hopeful
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 12/16/2008 7:39 PM (GMT -6)   
I'm 19, and currently in the worst flare since I was diagnosed when I was 17. Right now we're trying the humira since steroids nearly killed me, and it's been a wait and see. Supplements? Been on any you care to name. Tried excluding nearly any food you care to name. Still, I'm thankful I've made it this far intact and I just wanted to see if there were any other young'uns like me out there :-)

Also, anyone else out there on humira? how long did it take for you to get in remission?

piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/16/2008 7:56 PM (GMT -6)   
I know how bad it sucks to be young and with this disease, its been the worst year of my life and I'm very sorry you're dealing with it too.

I see two different doctors, my regular GI and a specialist of IBD, who actually was one of the guys who did the initial testing with Remicade--so hes a huge advocate! The specialist mentioned Humira, but didn't talk much about it and my GI just flat out said no because he said its too new of a drug, so I'm not very sure about it. What made you decide to take Humira and not Remicade?

Atleast, for now, I can offer my support...since we're in the same boat!
21, female
Diagnosed September 2007
Remicade
Prednisone
Asacol
Protonix
Bentyl
Lomotil
Lasix
Zofran


Jen30
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 12/16/2008 8:12 PM (GMT -6)   
I had remicade today- why not remicade?  Stay hopeful- eat right, right vitamins, right meds, no stress. 

vb4girl
Regular Member


Date Joined Jul 2006
Total Posts : 90
   Posted 12/17/2008 7:03 PM (GMT -6)   
Hi there. I was diagnosed at 19 and now 28. Going through it that young is really tough but you are strong, remember that! Ever_hopeful, I am wondering too why your doctor said Humira before Remicade? I had remicade today too. I've been taking it since August 2006 w/o any problems or return of symptoms, thank goodness! I hope the next treatment you are on, gets you into remission. Please keep us posted!
Diagnosed w/ Ulcerative Colitis in 1999

Major Flare 6/2006- in hospital for a week where I received ALOT of IV prednisone and 1st Remicade Infusion. Continued on bed rest for an additional week.

Current Meds-
Off Prednisone since Oct 2006.
6mp- 100 mg at night- SUCCESSFULLY TAPERED OFF IN SEPTEMBER 2008!
Remicade Infusions every 8 or 9 weeks-last infusion 10/2008, next one is next monday.

Considering Probiotics.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/17/2008 7:39 PM (GMT -6)   
Hi! This disease is hard for anyone of any age but it's definitely not fun to have it in college. I was diagnosed last year, and the last two years have been the worst for me.

I'm going to echo everyone else--why not Remicade?

As far as supplements go, you could try some probiotics. There are many kinds and different ones work for different people. If you want to try a multivitamin, try Forvia--it's made for people with IBD.

Diet is different for everyone too. I'd recommend keeping a food diary and keeping track of your symptoms.

And welcome to HW!
Female, Age 20
9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/17/2008 7:44 PM (GMT -6)   
Remi uses mouse protein and Humira uses human. More side affects possible with remi. Thats reason I am avoiding remi, and going with the golimumab. I was just discussing that with two GI docs today.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 3 day
Immuran
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 12/17/2008 8:44 PM (GMT -6)   
My daughter is 15, and not doing well. I am probably not the cheerleader you need right now. "We" just had the 4th infusion of Remi, and it was a doubling of the dose. No luck so far. Still pain, cramps, blood etc. Wonder if it might just take a bit more time to kick in. I too am ever-hopeful. We would give Humira a try after this if it doesn't work....
There are lots of different ages around here, so don't be afraid to reach out. There are tos of good ideas for all ages. Hang tough!
Daughter,15 diagnosed 1-08 w/ UC .
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. four x this yr. Low residue diet still, an
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Cortafoam enemas 4xweek
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
Had 3rd infusion of Remicade, and still on all of the other drugs, except Flagyl and Pred. Better, not healed. In a drug trial for children. In an 'iffy' state-- on a flare's edge.


piccolobellezza
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/17/2008 9:32 PM (GMT -6)   
Remicade is made with human and mouse antibodies, right? And Humira is strictly human? Does anyone know if Humira been used in as many UC studies as Remicade and how successful have they been?
21, female
Diagnosed September 2007
Remicade
Prednisone
Asacol
Protonix
Bentyl
Lomotil
Lasix
Zofran


Ever_Hopeful
New Member


Date Joined Dec 2008
Total Posts : 11
   Posted 12/18/2008 9:34 AM (GMT -6)   
Thanks for the welcomes :-)

The reason my GI is going with humira is the allergy thing. Right now we are trying everything before surgery. The thing that gets me down is just the what if factor. What if I had eaten like this or took that supplement? I feel like I've exhausted my health food store sometimes, haha.
I'll definitely look into that multivitamin, since most of the ones in he drugstore just make me horribly nauseas.

My next shot of humira is tomorrow and I'm hoping I'll see some improvement. I've got places to be people!

vb4girl
Regular Member


Date Joined Jul 2006
Total Posts : 90
   Posted 12/18/2008 9:48 AM (GMT -6)   
Let us know how it goes! Good luck with it tomorrow. I go through the WHAT IF factor all the time. It's very hard to deal with the WHAT IF factor because we are always second guessing our treatment and else is out there and what could be out there. I really understand how you feel! When I am getting Remicade, I am thinking, it better keep working, etc.
Diagnosed w/ Ulcerative Colitis in 1999

Major Flare 6/2006- in hospital for a week where I received ALOT of IV prednisone and 1st Remicade Infusion. Continued on bed rest for an additional week.

Current Meds-
Off Prednisone since Oct 2006.
6mp- 100 mg at night- SUCCESSFULLY TAPERED OFF IN SEPTEMBER 2008!
Remicade Infusions every 8 or 9 weeks-last infusion 10/2008, next one is next monday.

Considering Probiotics.

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