• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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7

73monte

Hello all,

Just joined today. I'll try to be brief. My Daughter, (now 20yrs. old), was diagnosed with Crohn's 6yrs. ago.
Was put on Pentasa after Prednisone, but after 2yrs. developed severe inflammation, along with an almost deadly abscess.
Got that resolved, onto Imuran, for the last 4 yrs. Her last scope and MRE have shown advancing disease, along with 15cm's of scarring in the small intestine, (TI).
Now it's onto Remicade and Imuran together. She starts in a about a month.
Of course we're very worried and concerned. We keep hearing about how Remicade is a miracle drug, but then there's the side effects.
I joined here since there's a Remicade page.
Anyway, just wanted to introduce myself, and keep it somewhat brief.
 
***Lisa***

***Lisa***

Hi 73Monte & Welcome:

Our stories have some similarities as my daughter is 20 now & was diagnosed just over five years ago and has been on prednisone, entocort, cipro, flagyl & 6MP. She took Remicade, and, yes, it was a miracle drug, but the miracle only lasted for two years and then it stopped working, even after they increased the dosage to the highest dosage permitted. The side affects were terrible (joints popping, hives and she ended up getting Seborrhoeic dermatitis). She had her last infusion in October 2012 and will never take Remicade again. Everyone needs to make their own informed decision by weighing the pros & cons of any treatment plan as these decisions are never easy or crystal clear.

Please keep us posted on your daughter's progress.

Lisa :ghug:
 
scottanias

scottanias

Welcome to the forums! I understand your apprehension with Remicade. I'm starting it myself the 18th. Crohn's puts in some really tough situations where you have to make some really difficult situations. I'm personally going to try it despite the possible sides. Hope all goes well for your daughter.
 
Farmwife

Farmwife

Hello and welcome.

My daughter is a lot younger then yours but age matters very little when it's your child.
I'm so sorry what you've been going through.
I do know these drugs can seems very scary but as you know so can untreated IBD.
Your doing a wonderful job advocating for your girl.
We have a wonderful Parents Forum (PRESS HERE) where mum's and dad's have had to make/advise the same decisions for their kids.
I hope all goes well. HUGS!:ghug:
 
7

73monte

Thanks to all for welcoming me in, and the good wishes.

Lisa: Curious to know, what course did you take after failing Remicade. I can only guess that you've chosen another anti-TNF.


Farmwife: Thanks for the link to the parents forum. I'll definitely check it out.


Tom.
 
***Lisa***

***Lisa***

Hi Tom:

Like you, we are exploring our options right now. Her GI is pushing Humira, but we are not willing to jump onto the Humira train. After stopping the Remicade infusions, she took a variety of vitamins, primarily Vitamin D3, Folic acid, zinc & magnesium and she did incredibly well for a short time, but is flaring again. I think that vitamins hold the key, specifically Vitamin D. For more info, checkout this string: http://www.crohnsforum.com/showthread.php?p=627519#post627519

Crohns is hard to predict, but our daughters will beat it. I am certain of that.

Lisa
 
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