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MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 10/11/2009 10:57 PM (GMT -6)   
confused  
My husband was speaking to a friend recently. Said friend has had Crohn's for about 30 years and has been taking Pentasa. She told him that during her most recent GI appt., her doc told her that the latest research on Pentasa is that it does nothing to help Crohn's. So he took her off it and is putting her on something else.  Has anyone else heard about this?
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • MissCris
    Regular Member


    Date Joined Jun 2006
    Total Posts : 320
       Posted 10/11/2009 11:33 PM (GMT -6)   
    I've heard a couple of people mention that on these boards but Pentasa helped me a lot for the first couple of years (granted I take tons of it). I'm still taking it on top of my Cimzia until that starts working but my docs are thinking it isn't doing much to help my Crohn's at the moment.
    "Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


    LMills
    Veteran Member


    Date Joined Apr 2008
    Total Posts : 1753
       Posted 10/11/2009 11:57 PM (GMT -6)   
    I've heard about it, but I still think it comes down to the individual. To me, that is the same as saying 'pentasa works for everyone.'
    It's kept me feeling well for almost a year now so I think I'll stick with it. It made things worse initially I will admit, but things went uphill after that.
    Diagnosed with Crohn's in May of 2008.
    Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
    bonniegriffith.blogspot.com/
    Learning how to live again.
    "He who has a why to live for can bear with almost any how."


    tamsprote96
    Regular Member


    Date Joined Apr 2009
    Total Posts : 55
       Posted 10/12/2009 9:12 AM (GMT -6)   
    I've been on it since diagnosis (Feb 09) and I saw immediate changes when taking it. I am also now on Humira but I can say the Pentasa still works for me. When I was sick and missed a dose it reminded me that I had missed it :)

    WriterMum
    Regular Member


    Date Joined Apr 2009
    Total Posts : 166
       Posted 10/12/2009 9:31 AM (GMT -6)   
    My GI says that it is true that Pentasa/Salofalk or whatever your version is called, is a maintenance medication and does not "stop" Crohn's. It does not act like Prednisone and reduce active Crohn's. It keeps things under control when they are under control already. Like tamsprote96, I do notice if I miss a couple of doses of the oral medication, but it is usually a couple not one dose. I definitely notice if I miss one dose of the suppository version.

    He also told me to keep taking the medication while I am in a flare and using Prednisone so that when I taper off the steroid it will hopefully keep the flare from returning. Like many have stated on this forum, it seems to be essential to keep up these maintenance meds, because we don't know what is happening microscopically inside us, and we can be causing irreparable damage.
    44 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March this year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
    Currently taking: Prednisone 0 mg (as of this week!!), Salofalk 2000 mg, Nexium 40 mg, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


    crohnielass
    Veteran Member


    Date Joined Mar 2009
    Total Posts : 1118
       Posted 10/12/2009 11:20 AM (GMT -6)   
    Hi yes i have concerns about just using Pentasa i am going to ask my surgeon if i need something else to run along side it 3 tabs a day for me doesn't sound enough  i really don't want to go back down the road that i have been down this last year!Bev smilewinkgrin x

    Diagnosed with crohn's at 13 now 42
    resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
    2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


    Zanne
    Veteran Member


    Date Joined Apr 2005
    Total Posts : 3763
       Posted 10/12/2009 2:32 PM (GMT -6)   
    Like so much of this DD it is one of those things that is very individual as to what works for one and what doesn't work. I was on Pentasa for many years and it worked well for me, but then it stopped working as well, so I had to switch things up and changed to a different combination of meds. Nanners, one of the moderators, has been maintained on Asacol, a very similar drug, for many years. In the grand scheme of Crohn's medications the 5-ASA's are one of the more mild drugs and so they tend to be one the first line of defense for some doctors. Other doctors like to go with the big guns first. It really is a matter of the doctors approach and what the patient and doctor agree on.
    Suzanne

    CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
    Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


    Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


    Iram
    Regular Member


    Date Joined Jul 2003
    Total Posts : 145
       Posted 10/12/2009 9:05 PM (GMT -6)   
    5 mg of Pred does more for me than 2 caps (4x day) that I do, but the doctors don't know the clinical impact of it, both my GI's acknowledge that Pentasa is not worth it, but still unless they independently evaluate you, by pulling you out of all other drugs, there is no way of knowing. So basically you stay on it.

    vitaka
    Veteran Member


    Date Joined Jun 2006
    Total Posts : 743
       Posted 10/12/2009 9:24 PM (GMT -6)   
    Pentasa's effectiveness depends in large part due to the location of your disease. The coating causes a delayed release, so the logic goes that unless your Crohn's is in the terminal ileum and/or right colon, it will not work. If you look at the printout you get when you get your prescription filled, it's primary purpose is for treating UC and Crohn's is listed under "other conditions it may be used to treat" (or at least that's what the Rite Aid printout that I get says).

    I personally am in the Pentasa-doesn't-do-crap-for-me camp, but I take it regardless because I experience no side effects from it.
    29f, PhD student, originally diagnosed with Crohn's in 2/06
    10/09: Prometheus test shows results consistent with UC
    10/12/09: beginning treatment for arthritis
    Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid


    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1883
       Posted 10/12/2009 9:30 PM (GMT -6)   
    One Mt Sinai Gastro called it an "expensive placebo" while another thought it was worth a try. This controversy has been kicking around for some time.
     
    The following link, from 2005, sheds light on why there is no definitive answer to the question of whether mesalamine (5-ASA meds like Pentasa and Asacol) should be used as therapy for Crohn's: 
     

    Iram
    Regular Member


    Date Joined Jul 2003
    Total Posts : 145
       Posted 10/13/2009 8:51 AM (GMT -6)   
    Recently, I saw two GI specialists/researchers in some of the top programs in the country, both of them sort of reluctantly agreed that among the gastro field they are indeed heading to conclusion that it is an "expensive placebo". The good news they are really big on biologics...they believe that is the way to go...interestingly they have completely given up on finding the cause for CD/UC or finding a cure. The real notion these days is Management. That is they just want to manage it.

    MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/13/2009 11:07 AM (GMT -6)   
    Sorry but "biologics"?  Is this a category of meds?  New to this still... Info. appreciated. Thanks.
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1883
       Posted 10/13/2009 7:02 PM (GMT -6)   
    Humira (generic name is Adalimunab) is a "Biologic." So is Remicade.
     
    There are two clashing schools of thought: a) start with least toxic but also potentially least effective meds first (mesalamine/antibiotic, etc.) and then, if necessary working up the pyramid toward stronger meds like Imuran and after that, biologics or b) start with strongest possible meds even though the potential for toxicity is greater.
     
    The most fierce proponents of choice "b" tend to be the gastros promoting biologics as first-line therapy.
     
    The following link goes to Johns Hopkins and supplies more info about the pyramid, biologics, and other therapies:
     
     http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=6&disease=21&lang_id=1
    Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. On Entocort since April 06. Never had D. Now using LDN to taper off Entocort. SCD multivitamin, homemade yogurt, 2000IU vitamin D3, 900+ mg calcium, 25 mg iron, monthly B12 shots, Krill capsules, occasional zinc. SCD diet modified to include potatoes and rice. 

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