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gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 11/8/2007 7:55 AM (GMT -7)   
I'd like to hear from those of you on Pentasa about side effects, effectiveness, etc. When I was diagnosed a couple of months ago, I started on steriod and Pentasa simultaneously. I was just getting over my colonoscopy and in a very active diarrhea and bloody mucus flare. I felt very nauseous, so the doctor blamed the Pentasa and took me off. I am currently on a Prednisone taper. The doc thinks that I won't like the Pentasa, and wants me to go to Entocort instead. I can be very stubborn. I don't want to give up on the Pentasa, because it seems like the least invasive med, and I'm not sure that my side effects were really the Pentasa, or just reacting to the flare itself. I'd like to know what side effects people are experiencing, and if they go away with time, and any other ideas and advice you may have. I know I've been posting a lot of different questions on this site; Please have patience with me. this is all new and so confusing. Thanks!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


AndyT
Regular Member


Date Joined Aug 2006
Total Posts : 64
   Posted 11/8/2007 7:59 AM (GMT -7)   
I'm on Pentasa and have been for 6 months now. No side effects that I have noticed other than spotting a feww of the white mini capsules at the other end....

I like you went on at the same time as I was on steroids for a flare, however i got no nausea.

Not sure if that helps

A

p.s. I still feel new and full of questions and I 've been here for over a year now (not v active though!) Tend to really abuse the site when I'm sick and then ignore the site and the disease when i feel better. I'm a user - sorry!


28 year old Chap
Diagnosed July 06 been ill since 96!
Had a Flare April 07 was on Pred now off it!
Had a scope July 12, waiting on results - need a Barium Follow Through as they couldn't get round to the illeum...
On Pentasa 6 tabs a day.


Lauren21
Regular Member


Date Joined Jan 2007
Total Posts : 200
   Posted 11/8/2007 9:09 AM (GMT -7)   
I have been taking 12 pentasa pills a day since last January. They really have no side effects. The only thing I don't like about them is that they are hard to swallow.

If you are nauseous, ask your GI for some anti-nausea medicine.
22 year old female
Crohn's Disease (diagnosed 2006) taking Humira & Pentasa
Polycystic Ovarian Syndrome
Anxiety Disorder
Psoriatic Arthritis
Costochondritis
Using Darvocet & Lortab for Pain
Tigan for nausea
 
 
 


nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 11/8/2007 9:25 AM (GMT -7)   
It caused severe gas and bloating and loss of hair for me. I had to stop taking it.

descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 11/8/2007 10:17 AM (GMT -7)   
I LOVE my Pentasa. I was have been on it since my diagnosis in June and have only had 2 mild flares(caused mainly by what was going in my mouth and once when they tried to switch me to Lialda!) I have avoided the steroids, thankfully, and am doing really well as far as the stomach cramps and D. I am really careful now about what I eat and how much. I have noticed that the diet makes a MAJOR improvement. The only side effect that I noticed is the hair loss. It was major for the first few months and still continues. I am very lucky that I have a very full head of hair so it doesn't show. Good luck and hope you feel better!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 11/8/2007 10:44 AM (GMT -7)   
I'm on 8 lovely blue pills a day, simultaneously with a steroid. I've not had any side effects at all with Pentasa. It's great and gentle on my body. Judging by my CT scan before and 2 mo. into the drug therapy it has successfully reduced some major inflammation. It isn't fixed, but it's a lot better. Pentasa is a maintenance drug so maybe your doc wants to put you on something more aggressive to tackle your flare...although, Pentasa and the other drugs I'm on currently are helping my insides get over my flare.
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs; diagnosed with anemia Aug. 2007. Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet/Ultram for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop
Now on Prednisone 40mg, stopped Entocort while on pred.
Ferrous Sulfate 325mg/daily for anemia


clavman
Regular Member


Date Joined Sep 2007
Total Posts : 39
   Posted 11/8/2007 12:33 PM (GMT -7)   
I also started Pentasa shortly after starting to wean off the prednisone. My only side effect from the Pentasa was migraine headaches which I had never had before(and never want again). My GI said that could be related to the Pentasa so we decided to cut my dose in half from 4000mg/day to 2000 mg/day and now my headaches are gone and I seem to be in remission(mostly). It is possible thatthe migraine was yet another side effect of the prednisone, but it did not start until I had already begun to taper it off. One of the above posts mentioned hair loss. I experienced a little of that also, but I attribute that to the prednisone because it started before I began taking the Pentasa. Best wishes Gumby
Bob
47 years old
Dx 3/07 Moderate Crohn's in terminal ileum-Probably had it for years earlier
Rx Prednisone initially for 8 weeks-40mg/day then tapered down to 0
    Currently on Pentasa-2000mg/day


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 11/8/2007 8:27 PM (GMT -7)   
I've been on Pentasa (btwn 10 and 15 pills/ day) for several years. I've never had any side effects and have found it can help with mild symptoms. When the disease really flared I needed other meds like entocort, pred or 6mp, but I've stuck with Pentasa through it all.
Currently in remission!


Trsora1
Regular Member


Date Joined Nov 2007
Total Posts : 111
   Posted 11/9/2007 11:07 AM (GMT -7)   
im on 6 pentasa day along with predisone and humaria shots. Been on it since september of 07. Just a headache and white beads at the other end. Not sure what medications or combination are making me feel better.

Debra Ann
Regular Member


Date Joined Nov 2005
Total Posts : 188
   Posted 11/9/2007 6:57 PM (GMT -7)   
I am on 16 pentasa a day, and I haven't had any side effects. If I start to flare, Ihave to go on something else with the pentasa, but my flares have been really few and far between. Pentasa and Imuran are doing it for me.

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/9/2007 8:02 PM (GMT -7)   
Pentasa really helped me too. 16/day. I had some hair loss but thought it was more from the entocort. I too have lots of hair so it doesn't show. I have some decrease in sex drive but not sure if it is from "the patch" or the pentasa. I see all the beads in my poop but have been told that is normal.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 11/10/2007 4:20 PM (GMT -7)   
Thanks everyone! I'm starting the Pentasa today, while I continue to taper my Prednisone. I have very thin hair to begin with, so hopefully I won't lose any! Thanks for the input and support!
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007


tamsprote96
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 4/4/2009 6:05 PM (GMT -7)   
I started with symptoms almost 3 months ago and was diagnosed with Crohn's 2 months ago.  I am currently on Pentasa (8 pills a day/500 mg each) and Prednisone.  I was on a taper but at the end of the taper the pain returned so I am on a maintenance dose and am getting ready to start Humira.  Dr says after we start the Humira I will taper off the Prednisone.  I have not had any side effects with the Pentasa and have had a drastic decrease of symptoms since going on the Pentasa.  I also take a multi-vit, B complex and Vit D.  I am hoping the Humira will help with the pain.  I have had migraines all of my life, but have not had one since being on the Pentasa.
 
40 yr old female, diagnosed with Crohn's Feb '08
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