Share Facebook
Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Mild patients: Have you taken Pentasa ALONE?


09-18-2014, 02:41 PM   #1
Sea_Star
Senior Member
 
Sea_Star's Avatar
 
Join Date: Apr 2014

My Support Groups:
Mild patients: Have you taken Pentasa ALONE?

If so, for how many years and did it really stop inflammation or strictures/scarring from forming?
09-18-2014, 04:27 PM   #2
emmaaaargh
Forum Monitor
 
emmaaaargh's Avatar
 
Join Date: Apr 2012
Location: Brighton, United Kingdom

My Support Groups:
I did, for two or three years after diagnosis! I was considered a fairly mild case back then. Started on it as my firstline medication, and I would definitely say it helped, as I went from uncontrollable watery stool to fully formed and in total control. I developed a stricture after two years, but after it was removed my GI said Pentasa would still be okay on its own as they hadn't observed much more damage to the area other than the resected part. So I went on with my life.
It stopped being enough a year later, though, when I had a flare that meant I needed to start azathioprine. I still take the Pentasa, but I don't think it's doing very much any more, to be honest.
Hope you're doing well
__________________
Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: Humira 40mg fortnightly
09-26-2014, 07:57 AM   #3
rollingwithmycrohnies
 
Join Date: Sep 2014
Location: Prince Edward Island

My Support Groups:
I started taking it and noticed a big difference after about a month and a half. Stools became regular and consistency was normal. For mild crohns this medication is helpful. You still need to watch what you eat and stuff, and it isn't for everyone. A lot of people say it's useless but that isn't true, it's just useless for them.
09-26-2014, 08:27 AM   #4
Smile Please
 
Smile Please's Avatar
 
Join Date: Jul 2013
Location: USA

My Support Groups:
They tried it on my son with his Azathioprine after he was diagnosed even raised it an extra pill every two doses a day and had no results. I'm glad he's not on it anymore, he was scared to swallow the pills right after looking at them. There after he had to take them with pudding or apple sauce. The Azathioprine is the only pill he'll swallow whole.
09-26-2014, 09:33 AM   #5
alex_chris
Senior Member
 
alex_chris's Avatar
 
Join Date: Apr 2013
Location: Frankfurt, Germany
If so, for how many years and did it really stop inflammation or strictures/scarring from forming?
3 1/2 years
No, it did not stop inflammation at all
Three strictures formed and 24 inches of small intestine had to be removed + a strictureplasty


The problem was back then I had no idea about the options because my GI back then didn't know them either...

P.S. I of course was initially called a "mild" crohn's patient, a classification that at least for me never made much sense as I see it to be illogical: "ok, at the beginning you have mild Crohn's so we don't treat you, then you advance to moderate-severe Crohn's and we start to treat you with drugs we could have used to prevent problems in the first place". I have yet to hear from a Crohn's patient who remained say 20 years in remission by using 5-Asa.
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
03-19-2015, 08:28 PM   #6
polgara59
 
polgara59's Avatar
 
Join Date: Jul 2014
Location: Red Deer, Alberta

My Support Groups:
I've been on Pentasa alone for UC since I was diagnosed last summer. Just saw my GI today and as long as I'm doing okay, I'll stay on it, even though I hate choking down the pills. I'm scheduled for a follow-up colonoscopy in August to make sure the drugs are doing what they're supposed to do.

Within a week of going on Pentasa, my bleeding stopped, and my bowel movements became more normal, including what passes for 'regularity.' I still have days where my tummy is a little rumbly, but nothing like what it was a year ago!
03-25-2015, 09:51 AM   #7
brooklyn23
Senior Member
 
brooklyn23's Avatar
I was on Pentasa for a year when I was first diagnosed, then stopped and started taking birth control to stop ovulation which caused the worst of my pain. But I think overall my health was not as good during this time. I'm back on Pentasa, feeling better.

Like my signature says, at the time I went back on Pentasa I was symptomatic but my scopes only showed equivocal inflammation. I guess it was a better safe than sorry thing. I intend to stay on it.
__________________
Dx Ileal Crohn's Disease 12/2010
Current Status: Most recent 'flare' began January 7. Symptomatic, but scopes show only equivocal inflammation.
Medication: Pentasa 4000 mg
Queen of the magical mystical utterly-debilitating ovulation pain.

Higher. Further. Faster. More. - Hopeless comic book nerd
04-22-2015, 09:03 AM   #8
lulu Belle
 
lulu Belle's Avatar
 
Join Date: Dec 2014
I'm was on Pentasa alone for a year. I'm never went into remission. So they put me on imuran with pentasa. That did the trick.
__________________
Diagnosed in 2014
Currently taking Pentasa and Imuran [/SIZE]
Past sulfasalazine
Also taking iron for anemia
And B complex vitamins [/SIZE]
04-22-2015, 09:55 AM   #9
xxjemmamxx
Senior Member
 
xxjemmamxx's Avatar
 
Join Date: Dec 2012
Location: Northamptonshire, United Kingdom

My Support Groups:
I have been on Pentasa alone for 2 1/2 years since my bowel resection. My nurses wanted to start me from the weakest meds and my consultant wanted me on something stronger than Pentasa but decided to not change anything as I am doing well on the max dose of Pentasa. I wouldn't say I'm symptom free but I'm yet to flare up. My Crohn's was 'severe' on my operation notes so I have no idea if I am a mild patient or not? I've only ever had the one flare up and that was when I was diagnosed and had surgery.
__________________
Resection Surgery 28/11/12
Meds: 4g Pentasa, Iron tablets, B12 injections
10-14-2015, 12:26 AM   #10
volleyball grandma
 
Join Date: Dec 2013
I have only been on Pentasa for 5 months and is the only medication I am on right now. Before this I was in remission from 1989 till 2008 with only taking bentyl when needed.
During 08 I started getting sick with pain in the right lower bowel. The pain would start slow and proceed to get stronger and stronger a few hours after I ate. The pain would go above my bellybutton and at times I couldn't go to the bathroom, that's when I took the bentyl it helped me go by relaxing my muscles. I would go off of food for about 3-4 days and only stay on fluids. As time went on this happened often until on March of15 I was getting an upset stomach and was throwing up for hours on and off. The pain was so bad I felt like I wanted to pull my hair out of my head. I couldn't even drink a sip of water and when my husband came home from work he called the ambulance and off to the hospital we went.
On arrival to the hospital I had x-rays taken, ng tube in my nose and they gave me morphine for the severe pain. They gave me an IV and after hours finally in a room. The next day I saw a surgeon and GI doctor. The surgeon said I had a obstruction I knew that and said he was going to do surgery at 11o am that morning. I called my family and they came before surgery. They did a resection and I was on pain killers, IV, stayed in for 4 days while I was on liquids. Then they gave me soft food and the IV came out.
Now I am on only Pentasa 4000 mg per day. I do take vitamin d3, multi vitamin, b12 shots, dha 600mg, and coq10 100 mg. Crohn's has been with me for 52 years. I was 14 years old.
I'm not sure how long I'll be on Pentasa as I don't think it is working for me. My GI is thinking of putting me on mercaptopurine. Don't really want to go on this since side effects are horrible, but I have a TPMT test I am waiting for the results. We'll see.
10-15-2015, 07:56 AM   #11
Axelfl3333
Senior Member
 
Join Date: Mar 2013
Location: Coatbridge, United Kingdom
I,ve been on pentasa for 5 years,8 a day and like a few people on this thread have found it helped though it's a difficult tablet to swallow
10-15-2015, 07:46 PM   #12
volleyball grandma
 
Join Date: Dec 2013
Hi Axelfl,

Could you please tell me how long did it take for the Pentasa to start to help you?
I also take 8 a day 500mg.
10-15-2015, 08:37 PM   #13
Kero
Senior Member
 
Kero's Avatar
 
Join Date: Dec 2013
Location: Edmonton, Alberta

My Support Groups:
I was on Pentasa for a couple of months, and for me it didn't seem to be helping at the time. I was taking 4 1g tablets a day. 2 in the morning and 2 at night. I do believe it helped to keep my disease from progressing somewhat and once my GI took me off my symptoms increased significantly. Keep in mind, I hadn't been diagnosed at this point (only recieved my diagnosis yesterday)
10-15-2015, 09:41 PM   #14
volleyball grandma
 
Join Date: Dec 2013
Hi Kero,

I have had crohn's since 1963 in the terminal ileum of which was removed in l977, then another surgery in 1987 and recently March of 15. When I first went to my GI after surgery he had blood work done and they came back great,but was having pain in the same area of the right side and just above the bellybutton. So he sent me for a ct scan and the results were there was more inflammation and a narrowing. I know crohn's comes back but this soon didn't make sense. He was also a little stunned. That's when he decided to put me on Pentasa. Now I see him in November and he wants to put me on Mercaptopurine which has bad side effects. My tpmt test that I already had came back with a result of 14.2 which normal is 15.1-26.6. In the lab I went to my test is considered low-normal which means I could get bad side effects. Now I am having this numbing and tingling with dizzy feeling in my finger tips and toes.Sometimes I go off balance. This I feel has to do with my b12. See what he says. Thank you for listening. Best to you.
10-16-2015, 08:52 AM   #15
Axelfl3333
Senior Member
 
Join Date: Mar 2013
Location: Coatbridge, United Kingdom
Hi volleyball my crohns took 2/3 months to settle down on pentasa alone with the odd flare up over the years but this normally happened when the hospital recommended I went on a maintenance dose of 4 tabs a day.i,m finding the tabs awkward to take just now as you know there fairly big.l,ve also been advised its ok to take them in one dose in the morning I used to split them up 4 morning,4 evening I,m unsure if this helped but I had a colonoscopy recently and it looked really good,but it's not a magic bullet patience and perseverance required and an approachable clinic nurse needed.good luck all the best
10-17-2015, 05:10 PM   #16
polgara59
 
polgara59's Avatar
 
Join Date: Jul 2014
Location: Red Deer, Alberta

My Support Groups:
Had another colonoscopy in August and there was no inflammation, so the Pentasa seems to be keeping things under control. My pharmacy started bringing in the 1 gm tablets and I find those much easier to swallow than the 500 mg, even though the 1 gm tablets are much bigger.

I think I must be a pretty mild case because the Pentasa eased my symptoms so quickly. I'm feeling rather fortunate after reading some of the stories on this forum!
10-17-2015, 10:59 PM   #17
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
DS was on 6-mo for 8 months
Pentasa isn't recommends as a monotherapy at all for crohns.
Most studies prove its slightly more effective than placebo
Works well for uc since it coats the surface but not the deeper layers

You need to realize there are only possible side effects of 6-mp
Meaning very few people get them .
No real side effects for Ds except the meds kept raising his liver ezymes when he would reach therapuetic levels .
So after reducing the dose and adding allopurinol the same thing happened
Ds was switched to mtx.

He was dx at age 7 and now is 11
He currently takes humira/mtx plus partial en with the crohns exclusive diet .

Good luck with the new med
Uncontrolled crohns is far worse than possible side effects
__________________
DS - -Crohn's -Stelara -mtx-IVIG
10-28-2015, 08:23 AM   #18
walklingtall
 
walklingtall's Avatar
 
Join Date: Oct 2015
Location: columbus, Ohio

My Support Groups:
My Doc just started me on entergam and that had worked well for sometime for me. But then i started getting some cramping type of pains in the lower left side. So he started me on Pentasa and at 1000mg. That caused me all kinds of problems with spasams the running to the bathroom, getting lower back pains. I sent a email to him on the patient portal to see what to do next. Reduce the dosage hopefully that will work for me. Best to all of you as we suffer together.
Reply

Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Mild patients: Have you taken Pentasa ALONE?
Thread Tools


All times are GMT -5. The time now is 08:40 PM.
Copyright 2006-2017 Crohnsforum.com