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sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 7/7/2010 2:12 PM (GMT -7)   
Well I finally heard back from Shire on my financial help application for Pentasa. They denied me. I guess they've changed the 'rules' and no longer can legally accept applications for Pentasa for those with Crohn's. Basically they've decided that it's not an approved drug for CD. Anyways, I'm really bummed. Now what am I supposed to do? I'm waiting for a call back from my GI to see if he suggests any other plan. There's getting it from Canada or there's Remicade. If he decides to try the Canada for the time being I need to find out what pharmacies his other patients use for the rx. I don't know if Remicade will be covered until after my pre-existing period is over (October). This bites.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008
Possible Rheumatoid Arthritis

Medication: Pentasa 6x daily, Imuran 50 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/7/2010 2:19 PM (GMT -7)   

tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/7/2010 2:19 PM (GMT -7)   
What is it used for other than Crohns? Did they deny you based on your finances or because of Crohns?

sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 7/7/2010 2:31 PM (GMT -7)   
Thanks. They denied me because of Crohn's. I guess it's only a UC approved drug now.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008
Possible Rheumatoid Arthritis

Medication: Pentasa 6x daily, Imuran 50 mg, multivitamin, Vit B12 1 g, omeprazole. Sulfasalazine


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/7/2010 2:41 PM (GMT -7)   
That's BS, so sorry.

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 7/7/2010 2:53 PM (GMT -7)   
That's so weird. I could have sworn that Pentasa was a Crohn's drug...sucks that they've made it only a UC drug.

Have you looked into maybe getting your Pentasa from Costco...? I've never used it, but I've heard from people that do the prescriptions run pretty cheap. Might be something worth looking into?
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

75mg Imuran, 750mg Balsalazide 3x day, Tapering Pred.

Maybe flaring...maybe not?


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 7/7/2010 2:59 PM (GMT -7)   
Recommendation to buy Pentassa??

You may wish to look at this posting, started by me. Buying Pentasta is not nearly as simple as you would think or want.
David

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/7/2010 4:09 PM (GMT -7)   
That's weird my Daughter was diagnosed Crohns/Colitis in 1999 and spent 4 years on Pentasa, not that it did much good. Since 2003 she has been on Asacol along with Imuran and Remicade.

tooth - Pentasa even at Costco would be an outrageous price because there is no generic for it.
Very expensive maintenance med!! Last my Daughter used it in 2003 it ran $250+ a month. We had prescription insurance. Can't fathom what it's cost is now in 2010.

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 7/7/2010 4:24 PM (GMT -7)   
You can always petition your insurance, if you GI states it is the best drug that will provide the best results. But Canada isn't a bad option.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 7/7/2010 4:31 PM (GMT -7)   
a few years ago i went to a CCFA sponsored conference. it was a good educational seminar. there two doctors, in separate break out sessions, totally independent of one another, both said that for CD, the sulfa derivative drugs (asacol, pentasa, colazal, etc) are no better, statistically, than a placebo. so basically no one with CD really clinically responds to these drugs. i was on almost all of them for over a decade and i never felt they did anything for me. they are basically the same, just different fillers thus the different names by different companies.

however for UC they are supposed to help...
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 7/7/2010 5:36 PM (GMT -7)   
I wonder what Sunanda Kane has to say about the effectiveness of sulfas on CD.
Cimzia, Asacol


Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 7/8/2010 5:54 AM (GMT -7)   
Well...
The placebo rates are usually high enough to give 5-ASA a try.

But, once you believe it's placebo, it's not sopposed to work anymore. My sister has CD too, and is only on pentasa, and I'm NOT saying that to her. She is doing very well.

In the other hand many peaple benefits from this meds (maybe they are getting benefits from the "placebo effect"), and any help is welcomed.
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 7/8/2010 6:55 AM (GMT -7)   
Yes, none of the mesalamine drugs (Pentasa, Asacol, etc.) ever received an FDA indication for use in Crohn's disease because none was proven more effective than placebo in clinical trials in people with Crohn's. They were more efficacious in ulcerative colitis, and therefore were approved for that indication. They are often used off label for people with Crohn's, I think because they have relatively low side effect risks and so doctors feel why not try them because they might help. But the evidence base for their use in Crohn's is poor.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 7/8/2010 9:16 AM (GMT -7)   
If you have fistulizing crohns I would be on remicade anyway. I just answered your other post, and I think you need to see your GI and make a new plan in light of new symptoms and med plan. Before Pentasa came out salazaphyrine was the drug of choice in its catagory. I was on it for years along with prednisone.

Julia

GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 7/8/2010 9:48 AM (GMT -7)   
If you have CD in your large intestine then Asacol, etc. are likely going to help. If it's in the small intestine or higher, then they won't.
Cimzia, Asacol


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 7/8/2010 11:11 AM (GMT -7)   
GDen said...
If you have CD in your large intestine then Asacol, etc. are likely going to help. If it's in the small intestine or higher, then they won't.

I've never heard that before, do you have a link?
 
The difference between CD and UC isn't simply location of disease - there is also a very significant difference in the pathology.  The inflammation in CD goes deeper into the wall of the intestine that it does in UC.  This could explain why a topical formulation such as the ASA aren't (as) effective for CD, but that's just a guess...
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!


appy.lovee
Regular Member


Date Joined May 2010
Total Posts : 88
   Posted 7/8/2010 2:05 PM (GMT -7)   
aww, im so sorry!
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.

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