Going to a seminar in my area (ccfa) that will have drug reps and Dr's on 4/30/09... Give me ammo..

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pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 4/1/2009 8:31 AM (GMT -7)   
skull One question I have for one unlucky rep is:
Remicade??? A: $2000
B:$4000
C:$6000
D:All of the above
diagnosed 1981
remission until 2006
Remacade,resection
B-12,Pentasa,Loperamide,
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 4/1/2009 11:06 AM (GMT -7)   
You in IL? They run a pretty good conference. The format looks like it will be different this year. Let us know what you learn.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/1/2009 11:36 AM (GMT -7)   

What is the recommended daily dosage of azathioprine (brand name is Imuran) to induce remission? To maintain remission?

Recommended dosage per kilogram?

I'll bet the answers are all over the map. Clinical trials were recently conducted to determine the optimal dosage of azathioprine, but no info has been provided so far. What did they find out? 


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/1/2009 12:31 PM (GMT -7)   
I thought it was 2.5mg/kg.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/1/2009 12:32 PM (GMT -7)   
If there is someone there from Salix can you ask them why they don't sell Xifraxan in Canada?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 4/2/2009 5:07 PM (GMT -7)   
I'll get back to you on 5/1/09...
Rochester N.Y. CCFA
diagnosed 1981
remission until 2006
Remacade,resection
B-12,Pentasa,Loperamide,
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 4/2/2009 5:57 PM (GMT -7)   
My question would be: why are all the drugs aimed at symptoms and not at a cure? In other words all the research dollars seem to be being spent on researching medications that treat the symptoms like cramps or inflammation or whatever and little is spent on finding the cause and thus a cure.
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been prednisone.


Reef08
Regular Member


Date Joined Dec 2005
Total Posts : 267
   Posted 4/2/2009 8:57 PM (GMT -7)   
Ask them why they can't come up with meds that don't have death or other diseases as side-effects?

mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 4/2/2009 9:12 PM (GMT -7)   
fimk said...
My question would be: why are all the drugs aimed at symptoms and not at a cure? In other words all the research dollars seem to be being spent on researching medications that treat the symptoms like cramps or inflammation or whatever and little is spent on finding the cause and thus a cure.

that's easy...cures end the perpetual money stream!!
hell i'd pay $25,000 for a "cure" any day though!!!!!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/2/2009 11:00 PM (GMT -7)   
My question would be.....when the he!! are they going to take "their" heads out of our butts and cure us already???????????????? well, that would be my main question, I have plenty more but won't bore anyone with them LOL!

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/3/2009 9:12 PM (GMT -7)   
Well I can't believe I am doing this but I am going to say something positive about the drug companies: before my diagnosis I was one hot mess. Asacol and then Pentasa has me fully functioning and doing very well overall. I have friends (yes, more than 1!!) that have full remission from asacol. So I know it isn't a cure and I know a lot of you are in very bad shape. But for those of us it works for, I thank them for making it, and I don't mind swallowing 16 a day and paying however much I pay after insurance. It works.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/4/2009 9:43 AM (GMT -7)   
Dang, I don't know what "full remission" means, anymore. As my daughter's case proves, lack of symptoms and good labs don't prove full remission.  It seems full remission would have to be verified by a colonoscopy because even a SBFT doesn't provide enough visibility. I'm beginning to suspect that, most of the time, when people say they are in full remission, what they are really saying is they THINK they are in full remission.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/4/2009 10:08 AM (GMT -7)   
That's what I meant NJmom, no symptoms what so ever. I haven't had "full remission" either but rather feel pretty good and generally function well day to day but still have to be very careful 24/7. The two others I know that just take asacol feel like they did pre-diagnosis on it and live their lives accordingly.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 

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