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fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/6/2009 3:21 PM (GMT -6)   
I see that you posted a bit about your doctor's appointment today in another thread.  Would you like to tell us more about what you discussed?  I hope that you're feeling a bit better about things...you seemed kind of down last week.
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).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/6/2009 3:56 PM (GMT -6)   
I asked her about the biologicals, and we settled on trying Humira just because I would be able to avoid having to go somewhere for infusions (I would have to use one of my employer's facilities instead of her office or it would cost me huge and I'd rather not be seen there). Although she said her observation, confirmed by her GI colleague at Mayo who have a much greater volume of patients, is that Remicade works a little better.

She explained that Remicade is made with mouse stuff, while Humira is made with human stuff... you probably know all that. She only had one patient react very badly to Remicade, many years ago. She said if I am allergic, I'll be able to tell right away, and she said her patients can usually also tell right away if it is having any effect. She said some side effects once identified (like itching) can be dealt with preemptively. We also covered the more serious stuff, TB, infections, lymph cancer, but I am not going to expect any of that, I'm not at risk from any family history.

I'm very hopeful! The insurance situation is being checked out, so I might not know until next week if the Humira will be the way we go. It's a "special Rx" which means it isn't subject to the usual co-pays...but it seems like it is covered even though not yet FDA approved for UC. So we'll see.

She says about 60-70 percent of her patients have good results on the biologicals.
She also said I would probably do well with surgery, I am good and healthy otherwise, and we even strategized about how I could sneak it in without anyone knowing! Should this not work and I decide to do it. I doubt I would, but who knows.

I like my doc, she thinks like me in that she says she, too, would not tell anyone if she had UC. We laugh, it's so undignified! She noted that I don't complain about it, just suffer privately (believe it or not). She observes that patients who think everyone should know they have it find it usually backfires on them, as far as success in life.

Thanks for asking, it helped to write it all out. More to come!


49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   

Post Edited (Peety) : 3/6/2009 7:44:14 PM (GMT-7)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/6/2009 4:06 PM (GMT -6)   
Good luck, Peety- you deserve a break! I'll be anxious to hear about the insurance/Humira situation- am thinking of going that route myself one of these days! Please keep us posted!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Primal Defense Ultra
Fiber supplement
 
 
 

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