Is Pentasa working?

[Boioiod]

I was diagnosed back in Jan and was having severe pain and exhaustion, bloody stools and about 10 times a day. What I don't know is - how do I know if my 8 Pentasa a day is really working since I'm still going like 4-6 times a day and somewhat frequently bloody? What should remission feel and look like?

 

[afman]

it seems like it is helping some since it has cut your bm down to 4-6 times. but pentasa is a farily weak drug it is more of an remission drug to keep you from flaring.

 

[beth]

Doesn't sound like it's doing much. Remission is absence of symptoms, so 1 (or how you were pre-crohn's) bowel movement a day, no blood.

Talk to your GI about upping the game.

 

[Swirl]

It looks like you're going less now that you're on it. Other then that if it reduced pain if you had any, you know it worked. Mesalamine worked for me in reducing pain. That's the only way I know it worked.

 

[Boioiod]

So it sounds like the best I can hope for from the Pentasa is not exactly restoration of my old life, but to dull the severity?

Personally, I think my diet modifications have had the most profound effect. If stopped taking Pentasa tomorrow, I couldn't say today I believe it would have any meaningful impact. Pretty sure if I took 8 pills a day of anything else I would be feeling pretty good, but not with this...

 

[scoutfinch]

My doctor initially put me on Pentasa when I was diagnosed. My symptoms were different from yours - mostly strong abdominal pain and nausea, occasional diarrhea. I was on it for over 6 months but it didn't lessen my symptoms to a very noticeable degree. I wish I had switched medications sooner, but I had other personal issues I was dealing with and didn't pay as much attention as I should have to my treatment.

It doesn't sound like Pentasa is doing enough for you. My advice would be to speak to your doctor about other medications and treatments - and then try something new. Remission should be your goal. The longer the disease is active, the more irreparable damage it can cause.

 

[billyjoel]

It's a mixed bag when treating Crohn's Disease. My body does respond well to Pentasa. You may need to talk to your doctor about a different medication to get into remission, it does not sound like remission to me if you have bloody stool, pain, frequent bathroom trips.

Like one poster said, you may want to try a more heavy duty med and then switch off of that back to the Pentasa to try and maintain remission.

 

[Brenda Hankin]

I too am on Pentasa. I don't ever feel like the chrons is in remission, but i do feel it is manageable. i also do humara injections every two weeks. I have had the bowel reconstructive surgery when I was 30, now I am 49. I try to stay positive and I tell myself I control the disease it doesn't control me. Don't give up maybe try a different med. and keep smiling!!!!!

 

[billyjoel]

@Brenda, good advice about not letting the disease control you, but instead you control your disease. You are right, if you practice good habits, like exercise when possible, diet, and taking your meds, and staying mentally positive, you may not eliminate symptoms but you can relieve pain.

 

[Jo-Ann]

I have just recently been diagnosed with crohn's. I have never, ever experienced any pain that alot of you talk about. I have just started taking Pentasa 500mg. 2 tabs, 3 times daily. Going on 2 weeks now. It doesn't seem to be doing anything. I still have frequent bowel movements. Terrible nausea and lots of joint pain. I am starting to get really fustrated with all this. I have been suffering from this for over a year and was just diagnosed this past April after a colonoscopy. I thought that things were finally going to become somewhat normal again. I can't work as many hours as I used to because I am so tired all the time. I have a bloated stomach that looks like I'm carring a beach ball under my top. I am sick of being sick. How long does it take for this drug to start working?

 

[yeldarb49]

Hi Boioiod,

Simple answer is no the symtoms you describe are not remmission. You need to get back to your Dr. and up the meds until you achieve true remmission, which as mentioned should approach your pre-disease functioning. Blood and frequency are signs of active disease. Pentasa did work for me but needed prednisone and other drugs to start the remmission.

I do not personally believe that any ASA5 drug can on its own induce remmission on it's own especially with a major flare. As mentioned as well the first flare for me was the worst, near death at 27 years old...

Good luck, let me know if you have more questions. I will try and help.

Yeldarb

 

[Gagan1979]

hi forum....

I m new as i discovered i m a crohnie only for 2 yrs now...... but i must admit that i was an
ignorant fool.. as i have suffered with symptoms for 8 yrs . i was 28 when i first realised that something is terribly wrong with me.
Thats also the yr i got married... it was difficult for both of us to adjust to
my disease...
well now i m on Pentasa 6 tabs a day... but i usually take 4?

I don't know if it is doing any good.... i still have 4-6trips to the loo .

I never really went thru any abdominal pain or even nausea but i do have acidity very often.
I m A FAT Crohnie... despetately wanting to loose weight but most of the day i m tired and sleepy... very fond of food and fruits which i have to lay off.

Please advise me the diet i can follow and the exercisr routine that won't disturb my job and make me doze off in office.

 

[nitty]

Another one here saying you should change your meds. Your symptoms sound very much like mine were, and there should be more improvement than what you describe. I changed from Pentasa to Mesavant (due to my CD being all in my colon), and have just been advised by my consultant to double the dose to the maximum. If that fails then I will have to try steroids or azathioprine.

I posted my worries about things on here recently, and the main thing people said that hit home was that if I don't get on top of this when it's relatively mild, then it could get much worse.

I had been thinking that even though I was not back to normal, everything was much more manageable. However, all the while that you have any symptoms, there will be some degree of inflammation there, and chronic (even low-grade) inflammation can lead to permanent scarring of the intestinal lining.

The advice I got from more experienced forum members made me realise I have to stop resisting taking more meds now, so I can hopefully have less problems in the future.

I hope this helps.

 

[Gagan1979]

It was really helpful, but i was wondering i can't just change the drugs on my own also its difficult to continue like this.

anyway what are the other do's and don'ts to avoid flare ups.
i m a vegitarian and also fond of junk food.

Please help me design a diet plan which also helps me loose that big fat belly.

 

[funnybunny]

I've been on Pentasa for years, and briefly on steroids for a couple of months. But I still have chronic diahrroae and can't eat large amounts of food any more.

Any recommendations?