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Remicade????????????

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Ulcerative Colitis
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Posted 4/25/2011 2:31 AM (GMT 0)
I'm a college senior and I've had diagnosed ulcerative colitis since sixth grade (but have been sick all my life). I also have polycystic kidney disease, a pancreatic cyst, and chronic migraines. My doctor has brought up remicade several times and i always was against it... there were too many risks, too many side effects, the treatment was too long, it was a drastic step, it might increase my depression... the list goes on and on... recently i've become more and more cognizant of the fact that i can't go out into the working force as sick as i am, so i'm opening up to the idea. I had all the blood tests on thursday and am going back to the doctor as soon as the semester ends to discuss if it's a feasible option and to have him answer my parents' questions.

i guess what i want to know is if anyone's been on remicade, what success it had, what it didn't do, and if any of my concerns are valid. please help me know that i'm making an informed decision.

Post Edited (rpgdancer) : 4/24/2011 8:48:06 PM (GMT-6)

Posted 4/25/2011 5:48 AM (GMT 0)
Hi,
I am an ulcerative colitis (UC) patient. I have been suffering from it since 2008. My doctor told me to do so, but I denied taking remicade. Then nurse (from the same doctor) gave me a number to call who is taking remicade. That patient is has UC for 18 years. He started remicade a year ago. He told me that he has been feeling okay since his remicade infusion started, and only remicade is currently controlling his disease. Infusion day is a kind of bad because of nausea, but then he becomes completely okay and under remission. I hope you remicade will be good for you. Best of luck!

I am now 40. I changed my diet since Aug'10 when I had my last flare up. I visited 50 times for 3 days before I my prednisone kicked off. I was taking an Ayurveda medicine in that time, and it controlled my symptom completely. I had a wonderful time for 7 months (Jan-Aug’10). As I could not manage to get that Ayurveda medicine from abroad, plus stress flare-up started. Anyway, I am on SCD, taking Asacol and salofalk. In addition, I am taking probiotic, bale fruit extract. So far so good.

I hope it will help.

Zrn
www.ulcerativecolitiscure.info
Posted 4/25/2011 6:44 AM (GMT 0)

rpgdancer said...
I also have polycystic kidney disease, a pancreatic cyst, and chronic migraines. My doctor has brought up remicade several times...

Are you at an increased risk for infections due to having polycystic kidney disease? The reason I ask is that Remicade increase the risk of infections, some life-threatening.
Posted 4/25/2011 4:59 PM (GMT 0)
Hi RPG, I being remicade tomorrow and am psyched. I am sick of being sick and need to know if this will work or not and then decide from there how I will proceed.

I have a different type of kidney disease (minimal change disease) and who knows remicade might help it? I have spoken to my nephrologist about it and he does not know of anyone with MCD has taken remicade and if it works or not. I hope it does and that I can help others.

Definitely talk to your nephrologist about any med changes. I do that with both my GI and Neph, that way I keep them informed and they both send eachother info from my last visit.

Best of luck to you, take care.
Beth
Posted 4/25/2011 8:11 PM (GMT 0)
@Beth
Thanks. It's good to hear that they aren't afraid to start remicade on someone with kidney disease. please let me know how things go.

I always take anti-nausea meds 3X/day (the same meds they give to chemo patients) so i'm not so concerned about nausea as i am about other issues making me sicker. i guess we'll all get answers when i see the doctors in june. still waiting on blood test results...
Posted 4/25/2011 11:29 PM (GMT 0)

rpgdancer said...
It's good to hear that they aren't afraid to start remicade on someone with kidney disease.

Of course they aren't afraid. It's not their body.
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