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jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/4/2008 4:50 AM (GMT -6)   
today i saw another doctor for a second opinion. he was highly recommended by my family doctor. he checked all my results from a colonoscopy and capsule endoscopy i had done a year ago and he said that i have a very mild form of crohn's disease. he said i either do nothing about it or take pentasa 3 pills in the morning and 3 at night. he said its the safest less side effects medicine he can give me. what are your opinion about that? i need to make up my mind of what to do. thank you all.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 8/4/2008 10:23 AM (GMT -6)   
You will find alot of different opinions on this medication. For those of us with mild Crohns medications such as Pentasa or Asacol are great options to help keep the inflammation down. I have always been able to control my flares with Pred and Pentasa or Asacol Before my resections I took Pentasa, after my resections I take only Asacol. It works great for me and has little to no side effects. I believe all Crohnies should be on some type of maintainance medication at all times even when in remission. And if you can get away with just using a mild medication like Pentasa, I say go for it. Good luck! JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1332
   Posted 8/4/2008 10:46 AM (GMT -6)   
Pentasa is a really mild med. I've been on it for years with no side effects (even on it while pregnant). A lot of people with more severe CD find that it doesn't help much. That said, if your disease is mild like your doc thinks, or if it is under control/in remission, Pentasa can help keep things that way. It certainly doesn't hurt (other than copays).
Currently in remission!


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 729
   Posted 8/4/2008 1:47 PM (GMT -6)   
I have been on Pentasa for about 6 years with no side effects. After several fistulas I had to add 6MP, but together they work for me. My mom has CD too and Pentasa is her only maintance drug - she has been on it for about 15 years now.
"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/4/2008 3:54 PM (GMT -6)   
thanks so much for your replies. they help so i can make up my mind. i am afraid of the side affects the most. but i talked to a friend of mine overseas who has colitis and she told me the same. so i think im heading with pentasa. wish me good luck. redface

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 8/4/2008 7:19 PM (GMT -6)   
i've been on several 5-asa drugs, including pentasa and asacol. i never thought they did anything for me. but some people swear they work.

but note this: i was at the san diego ccfa's chapter education symposium this last april. 2 different doctors, in different talks, both said and showed with data, that with crohn's disease 5-asa drugs, such as pentasa, are no better in CD than a placebo. they do however note a clinical response in UC. now this made sense to me as to why I never felt they helped me. now just cos the data says that in CD the results are nothing better than a placebo, that does not necessarily mean that some people with CD arent legitimately being helped by the drugs. i asked my GI about this in may and he confirmed what those docs said. so this may be something you may want to talk to your GI about. but do some research first cos doctors can get very defensive if you question them. something to think about. i dont mean to get your hopes down. just wanted to pass on some info i've discovered from my personal experience.

best of luck!
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


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/4/2008 9:39 PM (GMT -6)   
thanks crazy harry! so how to you manage your crohn's?

jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/4/2008 9:40 PM (GMT -6)   
thanks crazy harry! so how to you manage your crohn's?

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 8/4/2008 9:54 PM (GMT -6)   
proper food and diet. it is quite amazing. but then surgery removed the bulk of the real bad stuff only leaving in some mild active disease at the asmosis points. colonoscopy this last june showed things were ok and the doc said to continue doing what i'm doing. so good news. hopefully this can last for me a long long time.
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


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/4/2008 10:02 PM (GMT -6)   
thanks harry u gave me food for thought!

MysteryGirl
New Member


Date Joined Feb 2008
Total Posts : 19
   Posted 8/4/2008 10:06 PM (GMT -6)   
Pentasa was a life saver for me. My crohns is only in my small intestines and stomach. Pentasa and a PPI got me into remission and I've been feeling great. I hope it works well for you too!

jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/4/2008 11:25 PM (GMT -6)   
thank u so much mystery girl! ive decided to wait to discuss it with my family doctor first before i decide what to do!

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2120
   Posted 8/4/2008 11:37 PM (GMT -6)   
I only take Asacol. My doctor felt that I only had a mild case of Crohn's. Most days I'd agree. In May I had to step up to Prednisone to control a flare, I'm hoping to just go back to Asacol again. We'll see if it holds me alone. I'm also under the belief that it's good to be on a maintence medication. I've seen what this disease can do completely untreated (years of being undiagnosed) and it wasn't pretty!
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 6mg now, Asacol, Questran, Toprol XL (for high blood pressure).


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 597
   Posted 8/5/2008 7:06 AM (GMT -6)   
Since pentasa is a mild medication my opinion is to try it and see what happens. My main complaint was pain and it helped almost immediately. You can always go off it if you don't like it. It's not like the immunosuppressants that take months to be fully effective.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin,levothyroxine, sertraline, lyrica, methotrexate, down to 2.5mg prednisone and miserable.     


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 8/5/2008 7:55 AM (GMT -6)   
Jacenta while Harry makes a point that these doctors said they don't work, if you read above you can see they do work and work well for many. This is a very mild medication with little to no side effects. And as I stated above I believe everyone should be on some kind of maintainence med. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


RK
Regular Member


Date Joined Oct 2006
Total Posts : 153
   Posted 8/5/2008 10:45 AM (GMT -6)   
Have been on Pentasa for almost 7 years and it worked wonders for me. No side effects and felt better within a couple of weeks. Unfortunately, my CD seems to have progressed a bit in the last year or so and I've now started Remicade but continue with the Pentasa. My GI doesn't believe Pentasa does anything (my former GI does and she's the one who put me on it) but he says I can continue with it if I want.

32-year-old female diagnosed with CD in 2001.
Currently taking Pentasa 1g x 4 times daily. Started Remicade July 2008.


heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 8/11/2008 8:56 AM (GMT -6)   
I haven't taken anything since the end of december - tried the diet route - which helped until now. It seems if I get a cold or get stressed or fall out of my strict routine, my body gets very angry.

I am also trying pentasa - starting today at noon. If you could share how you're doing too, that would help me, if you don't mind. Since my last medicinal experience didn't go so well, I just tend to worry.

Best of luck, and here's to feeling better soon.
25 yrs - female : diagnosed with Crohn's 11/29/07

"i believe - you can keep going long after you can't"


miguelblanco
Regular Member


Date Joined Dec 2007
Total Posts : 131
   Posted 8/11/2008 2:40 PM (GMT -6)   
It gave me terrible diarrhea. Also gave me a rash. It may be "mild" but it didn't do me any favors.
Type I Diabetes- 29 yrs. (MiniMed Insulin Pump)
Celiac Disease- 8 yrs.
Crohn's Disease- (Nov. '06)
No meds at this time. (Don't agree with me.)


jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/11/2008 9:34 PM (GMT -6)   
thank you all! ive started pentasa 3 tablets twice daily on the 8/08/08. the pain has eased a little. ill definitely let you know how im going in a couple of weeks i think its too soon to work yet. now im battling an inflammation of my right eye. i was on cortisone eye drops for 3 weeks and after 3 days since i stopped them the inflammation came back.grrrrr. im seeing an eye specialist this afternoon.

heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 8/12/2008 11:14 AM (GMT -6)   
I have inflammation in my left eye! I've been to the eye doctor and had medicine for it, but it keeps coming back. It's getting annoying. I even had to put these goop in my eye when I slept.
25 yrs - female : diagnosed with Crohn's 11/29/07

"i believe - you can keep going long after you can't"


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 727
   Posted 8/12/2008 11:36 AM (GMT -6)   
I have just started 2g Sachet of Pentassa along with 5mg Steroids! Wish me luck!

Diagnosis: UC Pancolitis or Chrohns Colitis to be confirmed by biopsy.


tabitha m
Regular Member


Date Joined May 2007
Total Posts : 139
   Posted 8/12/2008 11:41 AM (GMT -6)   
Just to add to this i have been on Pentasa for 12 months and apart from a small blip at the moment it has kept me flare free and anything that does that i love !
 
Good luck Jacenta
 
Kerry
 
 

Oops just realised im on the Chrons site,ive got Pancolitis - im blaming that LondonRed he's everywhere lol tongue


Diagnosed Proctitis 2003
leaped to Pancolitis May 2007
bye bye Pred (fingerscrossed )!
2000mg pentasa a day
omega 3
Allergic to Sulphalizine
In remission since june
Multivitamin and calcium supplement
 
 


heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 8/20/2008 2:29 PM (GMT -6)   
Its been over a week on Pentasa for me - I think it's starting to get better? Maybe?

Does it usually take a few weeks to notice improvement?

I've noticed a few improvements, but not as much as I'd like or hoped for. I still have painful bathroom emergencies and bleeding. Although slightly less.

Here's to week 2!
25 yrs - female : diagnosed with Crohn's 11/29/07

"i believe - you can keep going long after you can't"


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 8/20/2008 2:37 PM (GMT -6)   
Yes heavly they usually do take a couple weeks to work. If things aren't really improved alot within the next few weeks, I would contact your doctor. Maybe you might need to add something to the mix. Good luck!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


brghtii
Regular Member


Date Joined Aug 2008
Total Posts : 24
   Posted 8/20/2008 3:19 PM (GMT -6)   
this thread is interesting.
 
What I was told about pentasa was it is a UC drug but works well in CD patients if they have it in the colon.  I was also told it releases (opens) in the colon.  I am surprised that some of you are using it for your illeum or stomach.  Also it is topical (again what Iw as told) that it is not systemic, thus why it doesn't work for those with severe CD.
 
I have been taking it for about 6mo.  But the pain is getting worse...so who knows what I should be on.
 
My CD is in the colon and rectum.  It is spread out, some here and some more there.
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