# The Role of Mesalamine in Crohn's Disease



## David

The article, "The Role of Mesalamine in Crohn's Disease" by Cosimo Prantera and Alessandro Armuzzi is found on pages 643-647 of the book, "Advanced Therapy in Inflammatory Bowel Disease" and is supported by 15 references.  For any of you interested in the deeper medical side of Crohn's Disease, this book is fantastic.  This thread will contain information I feel is useful in the article and I also open it up for discussion.

Mesalamine (Mesalazine - 5ASA) is commonly used for patients with Ulcerative Colitis but its use in patients with Crohn's Disease is quite controversial.  The authors of this article explore its use in Crohn's Disease.

- There are doubts about how well it works for people with Crohn's Disease but many GIs use it because it works well for Ulcerative Colitis and is relatively safe.

- Mesalamine acts topically.  It's like putting lotion on your skin but you're putting it on your intestines.  As Crohn's Disease can extend through every layer of the gut, it doesn't make sense that Mesalamine would work that well.  Conversely, Ulcerative Colitis only affects surface mucosa so it can work well for it.

- 5-ASA is the active therapeutic moiety of sulfasalazine.  Sulfasalazine is split by colonic bacteria into 5-ASA and Sulfapyridine

*Formulations, Solubility, and Area of Release* 

- Asacol is mesalamine that dissolves at pH 7 and releases in the terminal ileum and colon.
- Asacol microgranular is mesalamine that is encapsulated is small granules and dissolves at pH 7 and is released in the terminal ileum and right colon.
- Claversal, Mesasal, and Salofalk are mesalamine that dissolve at pH 6 and are released in the jejunum, ileum, and colon.
- Rowasa is mesalamine that dissolves at pH 6 and is released in the jejunum, ileum, and colon.
- Pentasa is mesalamine that is time released and released throughout the intestinal tract.
- Salazopyrin is Sulfasalazine that is dissolved by colonic bacteria and released in the colon.
- Dipentum is Olsalazine dissolved by colonic bacteria and released in the colon.

*Treatment with Mesalamine*

- Early studies of 1-2g of Pentasa showed a lack of efficacy.  4g trials had conflicting results.  
- A trial with 2g of Olsalazine showed no therapeutic affect and 22% of patients withdrew due to diarrhea.
- Salofalk versus corticosteroids showed steroids to be much more affective.  
- In a study of patients with mild to moderate disease in the terminal ileum, patients were assigned asacol, asacol microgranules, or methylprednisone.  Remission rates were about the same across the group.
- Pentasa versus Budesonide - Pentasa was less effective than Budesonide but as effective as 1g of ciproflaxin in inducing clinical remission.

*Mesalamine for Maintaining Remission After Treatment with Other Medications*
- In three studies with Pentasa in trying to maintain remission after treatment with other medications, there was no statistical significant between it and placebo.
- Two our of three studies with Claversal were negative.
- Salofalk and Asacol showed slight improvements over placebo.
- A Cochrane review (very strict) of 1420 patients found there was no improvement over placebo and didn't feel further study was justified.  Ouch.
- Another study of 1305 patients found some benefit over placebo.  A 6% benefit.

*Mesalamine for Maintaining Remission After Surgery*
- New lesions appear at the anastomotic site in 60% of patients within 1 year.
- In five trials one reached statistical significance and showed a 10% reduction in relapse rate.
- Six other trials showed an 18% reduction in reappearance of lesions.

*Other Stuff*
- Mesalamine in conjunction with Azathioprine or 6-MP seems to increase 6-TGN levels which can lead to Leukopenia.  However, the benefit there is it could be used to reach the therapeutic level of 6-TGN if it is monitored.

*Conclusion*
The author states, "Currently, the evidence is in favor of maintaining mesalamine in the CD therapeutic armamentarium, despite criticism from some authors".  Reasons include:

- It's pretty safe.
- Crohn's Disease is diverse so it could have thrown off studies.
- Sometimes CD is just in the mucosa such as early in disease history.
- Different drugs work in different locations
- Mesalamine can help Azathioprine/6-MP reach therapeutic levels.
- Higher doses may be more effective.
- Mesalamine may reduce the risk of cancer and is supported (and refuted) by a couple studies.


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## David

Pretty dire numbers overall   I didn't realize it was that bad.  Dusty, when you get your copy of the book, I'd love to see if you interpret this differently than I did in any way because wow.


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## sid

what are the chances of CD turning into cancer ?? how can that be avoided ??


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## PVail

Whoops its not very good is it.


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## nitty

All I can say is that it's worked for me.  However, I'm in the category of being diagnosed pretty quickly and while in the early, mild stages of disease.  Also, as far as can be determined by colonoscopy, mine is all in the colon, and was almost entirely symptomatic of UC (Crohn's diagnosis was determined by patchy inflamed areas found with healthy areas inbetween), so perhaps that's why it's been helpful in my case.

Also, I had better results with Mesavant, than with Pentasa.  Pentasa never fully stopped the bleeding, but (fingers crossed) the Mesavant has pretty much done away with it completely, perhaps because it targets the colon more than the small bowel.

So far, so good, and no side effects for me either.  I count myself very lucky!


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## Astra

very interesting! And something my gastro is always harping on about, that it doesn't work for CD, he's even told me to just stop taking it, even tho it was him that prescribed it in the beginning!
I've been taking Pentasa for 7 years now, dunno if it's helped or not, but I still take it every day, habit I think!
But...when I did stop taking it for a few months 2 years ago I ended up in hospital blocked and infected.


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## SarahD

This seems to be stirring up a bit of controversy :tongue: 

David, does the book give references to back up the statements re: the treatment comparisons? The problem when these sorts of statements are taken out of context is you don't get any feel for the way the studies were conducted. For example "In three studies with Pentasa in trying to maintain remission after treatment with other medications, there was no statistical significant between it and placebo." Failing to reach statistical significance doesn't necessarily mean an important biological difference doesn't exist, it could be that the sample size was too small to detect the size of difference they were looking for, or simply random chance (most statistical tests are based on 80% or 90% power, which is the probability to detect a significant result where one exists - i.e. 10 or 20% of significant results will be missed just by chance). It would also be useful to see the variability (standard error or confidence intervals) rather than just point estimates (not sure if you are copying the book directly or giving us a nice digested version).

I've had a lot of success with Pentasa in the past although recently it hasn't been doing it's job quite so well. I used to be able to tell if I'd missed a dose of Pentasa as my tum would start hurting a few hours later....

p.s. thanks for these little book snippets, I've found them very interesting so far and looking forward to the next one


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## David

SarahD said:


> David, does the book give references to back up the statements re: the treatment comparisons?


I'm providing a digested version.  There are 15 references for this article.  I was going to list them but then I realize that would be hard to correlate what inference they're backing up.  I don't have time to provide all of that, sorry.


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## David

nitty said:


> All I can say is that it's worked for me.  However, I'm in the category of being diagnosed pretty quickly and while in the early, mild stages of disease.  Also, as far as can be determined by colonoscopy, mine is all in the colon, and was almost entirely symptomatic of UC (Crohn's diagnosis was determined by patchy inflamed areas found with healthy areas inbetween), so perhaps that's why it's been helpful in my case.
> 
> Also, I had better results with Mesavant, than with Pentasa.  Pentasa never fully stopped the bleeding, but (fingers crossed) the Mesavant has pretty much done away with it completely, perhaps because it targets the colon more than the small bowel.


I believe it.  I do believe they work for some people and your case sounds like a perfect fit from what I have learned thus far.  I think what we can do is point people who join the forum and post stories along the lines of, "I have ulcerations and inflammatory strictures throughout my ileum and I'm on Sulfasalazine" to this thread.


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## xX_LittleMissValentine_Xx

I was on pentasa since diagnosis and I really liked it. (I didn't feel like I had any side effects and I suppose I assumed it worked). I saw my new GI two weeks ago and he told me to come off it. (I had to completely move the box, sometimes I remembered I was stopping it when I had just pored the sachet into my mouth! Four years of habit is hard to break!) I have to say I haven't noticed a difference in my symptoms. All I am taking now for crohns is 40mg azathioprine.


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## yeldarb49

before Pentasa can be ruled out the location of the disease needs to be considered as well as an individuals gut PH and retention time, I am sure we all know it can be short.  My GI switched me from Asacol to Pentasa based on the fact that I could regularly see whole Asacol tablets in my shit, so to speak.  My Crohns was in the large intestine, so to get the medication there we switched to pentasa, I was on it for more then 6 years with no flares.  I do not believe any ASA5 drug will by itself induce remmission, however, even though Crohns is a deep tissue issue, rhyme on purpose, I think ASA5 my prevent the initial Crohns from taking root, after all any Crohns leision has to start at inner surface of the intesinal wall, and if ASA5 helps prevent that then great and side effects are minimal for most. 



Just my thoughts...

Yeldarb


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## nogutsnoglory

Does this study apply to all ASA's or just mesalamine? Are there any mild crohns meds that have shown some efficacy?


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## David

nogutsnoglory said:


> Does this study apply to all ASA's or just mesalamine?


My understanding is that 5-ASA is Mesalamine?  Someone please correct me if I'm wrong.



nogutsnoglory said:


> Are there any mild crohns meds that have shown some efficacy?


Enteral nutrition 

Mesalamine HAS shown SOME efficacy, just not all that much.  But for those it seems to work for, I'm sure it's a great option.


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## rob101

After my resection and rediagnosed as having Crohn's not Ulcerative Colitis my GI took me off Pentasa as he said it had little evidence of working for Crohn's.


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## nikimazur

I've been on both Pentasa and Asacol Hd in the past year. Pentasa worked or a week or two, in helping me have semi formed bms, but after the first coup,e of weeks all I noticed was significant hairloss and no relief in my bowels. I just started Asacol HD about a month ago, and it has the same results. Starting week three a little bit more solid bms, but within a week or two I've gone back to my wonderful watery bms, and fun hairloss. My doctors have been quite conservative in treatment, wanting to try the 5-Asa's before jumping right into the big guns. I already have some health issues due to having a traumatic brain injury. I go back to my GI today thank god, and see what our next plan of action is. I can see from a medical standpoint why physicians want to try melasamine first since technically it has the least amount of side effects, but on the other hand in my opinion it's like putting a bandaid on a compound fracture haha. Plus I have suffered severe hairloss from both which I wouldn't have minded if the actual meds had worked


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## David

nikimazur, where is your Crohn's Disease located?  Only in the colon?  Or is there small intestine involvement as well?

I agree with you that in many cases when it comes to Crohn's Disease, Mesalamine is simply putting on a band-aid.  Problem with Crohn's Disease is then you walk on that fractured leg and do more damage over time which results in even bigger problems down the line because you weren't properly treated initially.


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## JDTM

Quick question for you David: I realize that you're not a doctor, but let's say you're me, you have a mild case of Crohn's in the TI, and no scarring or narrowing as of yet.  If Pentasa seems to work, do you think that it's still a "band-aid" for that kind of case?  I'm of the (optimistic) opinion that although it's fairly topical, 5-ASAs can help mild cases stay mild, and/or help flares either recur less frequently, or be less severe when they do recur.

Not sure what you think about all this.  I'm not particularly interested in constantly being on and off corticosteroids, but I'm also not in a huge rush to hop on an immunosuppressant if Pentasa can help keep things under control.  Let me know what your thoughts are (and anyone else, please feel free to weigh in).


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## handle

Hi JDTM,
     The research does portray limited options available for those with mild Crohns. The step up in medication from 5-ASA's is a tall one. If Pentasa keeps you under control (whether it's placebo effect or actual topical protection does not matter) then stay with it, and keep monitoring your condition. There are people with mild illness who swear it keeps them in remission.
all the best.


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## David

If I was you the first thing I'd do is play the guitar for a couple days straight and enjoy what it must feel like to have more than four active neurons in the right side of my brain.

I realize you asked a more specific question but I'm going to tell you exactly what I would do.  I hope you don't mind 

I would get down and dirty and have them really evaluate the true extent of my disease.  For example, your signature states that you had duodenal ulcers in 2011.  There's a decent chance that's Crohn's Disease and in my opinion, that would throw out the "mild" diagnosis.  

I would then get the data for every single test I have ever had conducted and enter it into a spreadsheet so I could monitor my levels over time and correlate it with other variables.

I would get every single vitamin and mineral level tested that they have a test for and supplement where necessary to get to IDEAL ranges, not just within the low level of reference ranges.

I would spend plenty of time in the sun yet avoid burning.

If the my doctor felt that my Crohn's Disease was still "mild" and wanted me just to take Pentasa, I would also, at the very least, supplement with enteral nutrition.  I would more likely do at least a six week course of total enteral nutrition until I was in remission and then move to supplemental enteral nutrition along with a strict elimination diet.  All organic and natural.

While on Pentasa I would regularly have them monitor various regular blood levels, inflammatory markers, and either fecal lactoferrin or [wiki]fecal calprotectin[/wiki].

I would likely vaporize marijuana if I was in a medical marijuana state.

I might try low dose naltrexone.

I would get regular massages and partake in low impact exercise such as yoga.

If at any point there was even a minor pop in anything I was monitoring, I would switch back to total enteral nutrition for at least a month.  If that didn't calm things down then I would want my disease reevaluated and would likely move to stronger medications if I had active inflammation and my intestinal mucosa wasn't 100%.  The medication I utilized would be one that is statistically shown to help induce mucosal healing.

I think it's incredibly important not to let mild become more than that.  The problem is "mild" can mean active inflammation that isn't causing much if any symptoms until it causes scarring and narrowing and then things get real.  We see it time and time again on this site and it breaks my heart 

Let's reaffirm that I'm not a doctor   Just some guy who reads every reputable study, paper, and book he can get his hands on regarding IBD and is potentially more opinionated and vocal than he should be   It's also much easier for me to say I'd do this rather than actually do it   Having another form of IBD (Lymphocytic Colitis) let's me cheat more than if I had Crohn's Disease.  At least that's what I tell myself


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## JDTM

Ha!  Well, I'm sure that colitis isn't exactly a walk in the park, so yeah.  I appreciate you reading up on all this stuff and taking the time to answer my question!

Fortunately, my doc is pretty on top of this, and I think we have a good handle on the extent of the disease.  10cm section, confirmed by colonoscopy and MRI, no narrowing, inflammation was present but mild.  The duodenal stuff is troublesome for me as well, and I'm with you as far as whether or not that takes me out of the "mild" category.  We'll see.

Working on getting the data.  I actually just asked my doctor for my vitamin levels on Tuesday, which she provided (sweet!), and I know my vitamin D levels were super low.  I'm going back in 2 months, barring any turn for the worse (in which case I'll go back sooner).  Not sure how often to ask for levels to be checked, but I'll keep an eye.

I also just signed up for OSCCAR, which sounds a lot like what you're doing on the site collecting data, here in Rhode Island.  I think it stands for "Ocean State Crohn's Colitis Area Registry," and they've got over 300 patients participating thus far.  Once a year questionaire, along with stool/urine/blood samples, a two-hour interview, periodic 6-month phone calls for updates, that type of thing.  Seems cool, and it's a small way for me to help.  I'm waiting for my forms to show up in the mail and I'll be meeting with someone later in June.

Doc just took another blood test to check on how my body is handling the Pentasa (kidney-related issues, I'm guessing).

As far as everything else you mentioned, my doctor said she'd be supportive of me trying elemental nutrition followed by a LOFFLEX diet or something like that, only cautioning me that it's hard to stick to and when I asked her about whether or not she could prescribe elemental nutrition, she said that she had tried and it's not available.  Ensure is hardly organic, but I could do it if needs be.  We'll see.  I like food, so I want to see if the Pentasa holds once I've tapered off the steroids.  I'll mention LDN if we're moving onto something else, medication-wise; I also live in a medical-marijuana state, which is great, but unfortunately my wife is super anti-marijuana, so that sucks for me.  (In truth, I think she'd accept it but I'd really have to be way worse off... we've discussed it a few times.  I'm into the idea partially because I've cut out alcohol, and I'll admit that it'd also be nice in other respects... My wife can have all the beer and wine she wants, it's only fair!)

Anyways, thanks again man!  All of this helps, and if you have any advice as far as what other levels to get checked and how to ask for them/how often to do it, let me know.  I know I had a Prometheus test, but I didn't get the results from that (not that I could make heads or tails of it anyways).


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## David

It sounds like you're taking a very active and proactive role in your disease management.  Good for you!

It's sad that your wife is against you utilizing a proven medication with very few side effects.  Your health is much more important than her socially induced, unfounded biases.


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## JDTM

Meh, my wife would likely accept it if things got dire... but even as it stands, I'm not experiencing a lot of physical pain, and my appetite is good... I'm not sure if I could even justify it myself, actually.  (I'd be willing to bet if I asked about it, my gastroenterologist would laugh at me.  And I don't mean that as a dis either -- she's great!)

I think it's unfortunate too, but she's supportive in many other ways... and besides, I know that this can be a fairly widespread attitude here in the States.  People are told all their lives that marijuana is bad, and that sticks with a lot of people, even when they're presented with evidence to the contrary.

I also did experiment a bit recreationally when I was in my early 20s, and even then, I didn't handle it all that well (paranoia, etc.).  Then again, who knows what the hell I was smoking.


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## David

JDTM, at 5:57am this morning I lay in bed wide awake and you popped into my head.

Have you had any tests to check between the duodenum and the terminal ileum to make sure nothing is going on in there?


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## JDTM

Not a pillcam, but the MRI was to see what was going on (if anything) beyond the terminal ileum.  They saw mild inflammation in the ileum, and were able to identify the 10cm section of it, but the rest of the small intestine looked good -- no other inflammation, no narrowing.  Which is good.  I do take some comfort in knowing that if things take a turn for the worse, the pill cam should be another option; apparently my doctor has capsule endoscopies listed as one of her interests on the gastro clinic website, so that's pretty cool.

Speaking of which, do you know offhand what it's called when they give you a "test capsule" -- something that's roughly the same size and shape, but will dissolve if there's a blockage or narrowing?

Also, full disclosure: When I first had symptoms, an upper endoscopy revealed duodenal ulcers.  By the time January of 2012 rolled around, I had my third spike in pain/trip to the hospital, and when I went to the doctor for a follow-up, she said that I shouldn't be having those pains (the omeprazole should have handled the ulcers by that point), and that she wanted to do another scope.  I still had mild gastritis and duodenitis, but the duodenal ulcers were gone by that point.  It was around this time that I also started experiencing lower GI issues, which is what eventually led to a bunch more tests, and finally a colonoscopy and a Crohn's diagnosis.


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## David

Sounds good 

The test capsule is called a patency capsule.

http://gitract.mngastro.com/mngi.nsf/patient_education/MNGI-7YURCU.html


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## nitty

nitty said:


> All I can say is that it's worked for me.  However, I'm in the category of being diagnosed pretty quickly and while in the early, mild stages of disease.  Also, as far as can be determined by colonoscopy, mine is all in the colon, and was almost entirely symptomatic of UC (Crohn's diagnosis was determined by patchy inflamed areas found with healthy areas inbetween), so perhaps that's why it's been helpful in my case.
> 
> Also, I had better results with Mesavant, than with Pentasa.  Pentasa never fully stopped the bleeding, but (fingers crossed) the Mesavant has pretty much done away with it completely, perhaps because it targets the colon more than the small bowel.
> 
> So far, so good, and no side effects for me either.  I count myself very lucky!



Well, so much for that!!  Since I wrote that post things gradually went downhill.  Tried doubling the Mesavant but no improvement, only side-effects.  Now on Prednisolone while the Azathioprine takes effect.  I guess it was all too good to be true.  Another 5-ASA failure:thumbdown:


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## David

I'm sorry to hear that nitty 

I hope things turn around for you soon!


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## nitty

Thanks, David.

It is disappointing, and I had a rough few weeks, but I suppose it's also an important realisation that I have to take this seriously and that it's not just a case of popping a few minor pills.  
It's made me put myself first for the time being, selfishly I feel sometimes, but I felt so crumby that I was hardly able to look after my kids properly.  If I don't look after me, then I'll not be well enough to care for them and we all lose out.

I'm feeling loads better already, so feeling more positive again!


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## Dutch941

Hey David......
I ended up on this thread after you commented about the lack of studies of efficacy of pentasa.....Am  I reading correctly that you speak mostly of Crohns and not UC?
  My reason is our case is a severe UC case affecting the entire large Intestine and assumedly nothing else.   Do you know if the studies suggest a strong efficacy for UC?
My understanding via the GI is that pentasa is fairly mild...tolerated very well....and is extremely supportive of therapys like 6mp ..kind of "boosting" the 6mp as it works.    Do you agree with this concept?


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## David

Don, I speak just of Crohn's and NOT UC.  Mesalamine is definitely useful in the treatment of Ulcerative Colitis for many.  I'll be more clear about that in the future, my apologies.

As for your GI stating that Pentasa "boosts" how 6-MP works, that's simplifying things.  Mesalamine is shown to increase 6-TGN levels.  6-TGN is the therapeutic metabolite for 6-MP and Azathioprine.  If its levels are too low, then chances are the medication isn't going to work.  So if it's too low then mesalamine can boost it to therapeutic levels which is great.  HOWEVER, too much 6-TGN is bad too.  So if your 6-TGN is high and you're put on mesalamine, it could kick you up into the bad range and cause serious side effects.  Point being, you want to have your metabolite levels tested to find out what is the best course of action.


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## Dutch941

We did metabolite tests.....remember my other post about liver enzyme issue.    Hls 6tgn is 365... My concern is that it's too effective....WBC down to 2.9. Which seems too low to me..


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## David

Ah yes.

I'm not sure what is considered too low for WBC and thiopurine meds.  Has your GI commented on it?


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## Dutch941

Planning to ask in a week at next appt


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## David

Another hit for Mesalamine.  One of the things I did like about it was it was shown to possible help reduce the risk of colon cancer.  Well...


> NEW YORK (Reuters Health) Jul 20 - A new meta-analysis indicates that 5-aminosalicylic acid (5-ASA) may not protect against colorectal cancer in inflammatory bowel disease.
> 
> Dr. Geoffrey C. Nguyen, who led the study, told Reuters Health by email, "5-ASA is very effective as first-line therapy for mild-to-moderate ulcerative colitis. What is more debatable is whether we should use it solely to prevent colon cancer in someone who is already on a different drug to treat the colitis."
> 
> ...


Source


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## Panda33

I was initially diagnosed with possible UC in May and was put on Mezavant to treat it; it didn't work. I got worse and ended up in hospital and was diagnosed with CD.


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## Paddy Holmes

Someone mentioned that Asacol turned up whole in their faeces. This probably isn't the case, the capsule is designed to release the ingredient faily early on and depending on the area of the colon affected, can then release the casing apparently whole. I studied one after being told this and sure enough there was ahole in the casin and it was empty. I can't take Pentasa as it gives me horrendous migraines so Asacol is my medication of choice. I have an Ileostomy as the main damage is at the join between the colon and Ileum. The main problem I have is due to adhesions( lots of surgery...short bowel syndrome), its very easy to develop blockages and have been hospitalised more than once. Almost easier to give birth LOL!


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## karj

I haven't had a lot of look with Pentasa either - the doctor changed it from Asacol  because apparently he said asocol was for the colon only.  But taking 2g twice daily made no difference and ended up back on steroids.  I presented with symptoms in the small bowel originally but now its mostly sigmoid colon and rectum which is causing me to bleed almost everyday but currently on steroids which has stopped it for mean time.

I am also taking the pentasa suppositories now and i am interested to see if i fair better with these.  Maybe it could be better option long term.


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## lizalou

Does anyone have any experience or information about Asacol suppositories for peri-anal Crohns? I would be most grateful for a reply. First post!


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## bettyboop12

I was given Pentasa 8 years ago but didn't really take it as I felt no benefit what so ever.  May be a little constipated from time to time but put that down to my diet.

Now on SaloFalk and Budesonide which I don't think is working at all.  Been on both for about 2 months.

I want to come off them and go au natural but guess i will need my GI to agree to this.


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## ellie

Does the site of the Crohn's disease affect the effectiveness or otherwise of Mesalamine?
I get the impression that it seems to work mainly in the colon - so if the diagnosis is Crohn's colitis, and not involving other areas of the GI tract, then there is probably a better chance of Mesalamine being helpful? (compared to small bowel involvement?)
Also, strictures seem to be more of a small bowel phenomenon, am I correct..? Don't think I've heard of large bowel strictures from CD... ?



 HD


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## ChrisL

I was diagnosed with UC and Crohns this past April and I also have an ulcer. I also have Anklyosing Spondylitis. I am presently on Lialda, Budesonide and Omeprazole plus Remicade. Since the UC and Crohns is all new to me I am not really sure how I am supposed to feel but the meds seem to be doing their job. I take the Lialda 4 tablets once a day.


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## LJoy

I've been on Pentasa for years but have recently been moved up to Methotrexate and Remicade.  The doctor discontinued the Pentasa. So now I have almost 2 bottles of the 1 gram capsules.  I think they were expensive and wish I knew someone to give them to.


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## Jandeacs

Hi Im taking  Pentasa 2mgs twice a day , I cant say it works as such , but since i had the granules, the flare ups are not as painful , ive been on it since diagnosis in 2003, Crohn's that is ,  but i did have to have major emergency surgery , and a hemicolectomy while i was on it , but not on azathioprine, will go back on that as soon as my surgery is done , in the belief that strictures can develop more activly at the site of surgery . im not sure if its habit , taking the Pentasa or it does help , but i will study it a bit more now ,  seeing the surgeon on Thursday , hopefully with a date for reversal and removal of my gallbladder , i have been waiting such a long time , and considering i have a huge prolapse and a massive hernia under my stoma , i wish it was sooner rather than When ?  fascinating reading though , thankyou .


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## DennisD

Thank you all for this thread!:blush:


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## karj

My pentasa doesn't do me that good either but there were a few occasions where i ran out of them (was waiting to get paid!!) and I always found i was worse those days, so that makes me think it is helping some little bit.


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## KWalker

So Asacol, Pentana AND Mesalmine are all no good?


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## kiny

I take pentasa, I do not exactly know how effective it is. I also think it's hard to tell, no it's not as powerful as other medication, but it theory it should work on some level, it works in vitro, it's really hard to judge if it works in vivo I feel.

Considering the really good safety profile, and perhaps the placebo effect that could lead to a clinical improvement, I believe it's still useful for crohn's disease.


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## kiny

Paddy Holmes said:


> Someone mentioned that Asacol turned up whole in their faeces. This probably isn't the case, the capsule is designed to release the ingredient faily early on and depending on the area of the colon affected, can then release the casing apparently whole.


that's right, same with pentasa, it can release it's content while staying whole from what I understand


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## rkoll327

nikimazur said:


> I've been on both Pentasa and Asacol Hd in the past year. Pentasa worked or a week or two, in helping me have semi formed bms, but after the first coup,e of weeks all I noticed was significant hairloss and no relief in my bowels. I just started Asacol HD about a month ago, and it has the same results. Starting week three a little bit more solid bms, but within a week or two I've gone back to my wonderful watery bms, and fun hairloss. My doctors have been quite conservative in treatment, wanting to try the 5-Asa's before jumping right into the big guns. I already have some health issues due to having a traumatic brain injury. I go back to my GI today thank god, and see what our next plan of action is. I can see from a medical standpoint why physicians want to try melasamine first since technically it has the least amount of side effects, but on the other hand in my opinion it's like putting a bandaid on a compound fracture haha. Plus I have suffered severe hairloss from both which I wouldn't have minded if the actual meds had worked


I had a similar experience with Pentasa. My Crohn's is in the small intestine, but I also had extremely bad hair loss while taking the medicine. It worked for a few months along with the prednisone, but as soon as they weaned me off the prednisone the Pentasa didn't seem to do much. And I agree, as awful as the hair loss was it may have been worth it if the meds worked!


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## Emily

Mesalamine (in Pentasa form) exacerbated my symptoms and as soon as I went off it I went into a 10 year remission. Obviously I'm not totally sure if that's cause and effect and this is based on guesswork by my doctor, but just sayin'.


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## Dutch941

Ok...just an update.....regarding the WBC reduction that I mentioned before...my doctor was not concerned about it falling to below 3..... He stated they watch the absolute neutrophils more closely than the WBC.....when they drop below 1 ...they become concerned and will halt 6mp.
 That being said the dr did take my son off the 6mp due to liver enzymes refusing to normalize.  He wants to make a go of it with just the full possible dosage of pentasa.....any thoughts?    He says this may hold things off for 6 months....a year...2 years...who knows.  So as much as I worry about 6mp....I am now worrying Bout not having 6mp.     Anyone have any suggestions as to nutrition and or supplements that will make this treatment go smoother?    Something that isnt impossible for a 13 year old?


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## David

I'm not a fan of just Pentasa.  How severe is your son's disease?  If memory serves, your son won't do total enteral nutrition and I know you're aware of LDN.  Maybe try a combination of supplemental enlemental nutrition, curcumin/tumeric, and paleo diet or SCD.


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## Dutch941

His disease was labeled as "severe"..but I'm not sure what classifies it as such....upon discovery he had ulcers and damage in his entire colon  and it was a hot mess......cleared up quickly with prednisone...followed by the 6mp and it has been a non issue since.    Anything diet wise is a bitch.   He is extremely moody and resistant......it's hard to even get him to eat a standard healthy diet along with the family....my wife has looked into the SCD and thinks it would be a challenge...I'll have her look again.we did get his folate and b12 levels checked and I'm waiting to see the results.  Had to talk the dr into it because he says they are not a concern unless other specific lab levels seem off......he says if the inflammation creeps back up we will discuss starting 6mp at a very small dose or remicade.....I think we would opt for. LDN first though.....


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## David

Be sure to get the exact levels of the B12 and folate when the results come back.

Your doctor is likely looking for signs of megaloblastic anemia which just plain aren't always present with B12 deficiency.  That 6-MP he was on?  That however is known to cause B12 deficiency.  In addition to Crohn's interfering as well.  In my opinion, not testing B12 levels for someone on 6-MP who has Crohn's is like not doing a CBC.  Good job fighting for it!


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## lindbergh

diagnosed with Crohns in June.
Was put on Assacol 9 pills a day
I am now normal. The pain has gone away
only going to the bathroom 2 times a day
Even started to by the drugs from Canada to save 
money. They work just fine.


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## Chelsey79

I want to warn everyone who is on/ taking pentasa. I was hospitalized twice last spring with pancreatitis and I am only 20 years old. I'm not a drinker so that was not a factor. I have come to find out that sometimes medicines such as pentasa can cause pancreatitis. I used to think it was the entocort but found out today that entocort causing that is almost unheard of. Pentasa does seem relatively safe  I used to think it was harmless. Just keep in mind that it can cause pancreas problems!!


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## Dutch941

Chelsey.....follow up questions.....did u learn of your pancreatitis via your lab work?      Did they discontinue pentasa and then see an improvement in your pancreatitis?
Also..what was the treatment other than stopping pentasa?  How long we're you taking pentasa before having a problem?  How much pentasa?


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## Chelsey79

I was hospitalized with svere pancreatitis . The drs that had me on pentasa kept ignoring my pancreas and kept saying it was (from my crohns) which I was only diagnosed in February and had been on pentasa for about a month and a half. Today I saw a dr who works at one of the best research hospitals in the country and he informed me that he has never seen a case of pancreatitis w entocort but several w pentasa. I don't drink and have no gallstones so he pretty much said 99% of his guess would be the mesalamine. He said its not common but it happens. I was on 8 capsules a day 500 mg capsules. And I began noticing pancreas pain about 3 weeks after taking pentasa. Every morning really sharp pain that felt like a really strong muscle cramp right where my pancreas is


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## Dutch941

Thanks Chelsey....sorry to Hear that......we were informed of the possibility....currently my son is on 5 a day..2500 mg.  I believe that his labwork includes  several tests to ,watch for pancreatic issues..can't remember which ones....was your dr not reviewing the enzymes that would have indicated an issue?


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## tanyasf

My husband's doctor has recently seconded the opinions shared here by David (thank you David for all of the info).  He said there is no clinical evidence that Pentasa does anything...  And dangerously it's hard to see in a colonoscopy if it's working- there could be inflamed tissue behind the walls.

We are now looking at starting 6mp.  On this site there was a wiki article stating that "...azathioprine has many of the same benefits and side effects as 6MP. Azathioprine is less toxic."
Is this true?  Should we ask for Azathioprine?  David, or anyone, in your research is it just as effective but less toxic?
Of course, we will also check with his doctor...

Thanks,
Tanya


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## David

Hi Tanya.

From what I've read, I think you may have that backwards.  I believe 6mp tends to be less toxic than azathioprine/Imuran but it seems that doctors tend to prescribe the latter more often.  Frankly, I'm not sure why that is but others may know and will hopefully chime in.

I hope you don't mind, but I moved what you had at the bottom of your post to your, "signature" so that you don't have to write it each time.


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## PVail

Personally I believe Asacol does work. Ive been on it for well over a year . Before that It was miserable , with all the symptoms common with IBD. I still have pain in the Ilieum area and shooting pain in my side but my bowel movements now are more predictable. My colonoscopies are always clear yet i was in pain constantly . I now watch what a nd when I eat i try to keep fit . I have given up on doctors as i dont believe Im a high enough risk for them to spend money on me. But Asacol mesalamine does it work , in my case yes it does.


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## JDTM

Peter, quick question on the Asacol.  You say that you have inflammation in the TI; does Asacol actually release in the TI, or does it only help the colon?  David, any thoughts on this?  I've heard that Asacol can be quite effective, but usually in UC.

I'm asking this partly because I'm on Pentasa, and pretty much only that at the moment.  Doing OK, but wonder if I could be doing better, and I don't want to be a ticking time bomb either.  I'd be interested if perhaps another mesalamine would work better for me.  My guess is that I was prescribed Pentasa to start because my GI might have hypothesized that I had other inflammation elsewhere in the small intestine, based on the fact that I had some stomach pain from duodenal ulcers happening before my diagnosis.  (An MRI later revealed that the rest of my small intestine didn't have any additional inflammation beyond the TI, so that was good.)

Gotta love the medication guessing game.


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## David

Asacol releases at a pH of 7 or greater.  Where it releases in your intestine is dependent upon your pH and everyone is different.  For a majority of people, that will be a release in your terminal ileum for treatment of inflammation in the colon.  For some people, you're going to pass the pill in tact.  Other people it'll release higher up.


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## JDTM

Any thoughts on one versus the other?  Wasn't sure if you thought all forms of mesalamine were all kinda "meh" within the context of CD, or if that opinion was only reserved for Pentasa.


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## Chelsey79

I heard today that they prescribe imuran because the dosing options Re more flexible unlike the 6 mp so even though they are basically the same thing imuran is easier to adjust as far as dosing goes


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## David

JDTM said:


> Any thoughts on one versus the other?  Wasn't sure if you thought all forms of mesalamine were all kinda "meh" within the context of CD, or if that opinion was only reserved for Pentasa.


If I had a form of Crohn's Disease that wasn't Crohn's Colitis and was going to take a form of mesalamine, it would be Pentasa.  If I had Crohn's Colitis and was going to take a form of mesalamine, I'd probably take Asacol.

I probably wouldn't take mesalamine though.  DEFINITELY not by itself.  But that's easy to say when I don't have to make such decisions 

I've thought about taking a form of mesalamine for my lymphocytic colitis but have never quite gotten that desperate and am still on the diet and lifestyle approach to treatment.


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## tanyasf

Hi David-

Thanks.  Yes, I was going to copy that into my signature but lost track of time.

I will let you guys know when the doctor gets back to us about which is more toxic (Aza or 6mp).  I'm sure it's complicated like all of this...

Anyone know anything, please do weigh in.

Tanya


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## PVail

JDTM said:


> Peter, quick question on the Asacol.  You say that you have inflammation in the TI; does Asacol actually release in the TI, or does it only help the colon?  David, any thoughts on this?  I've heard that Asacol can be quite effective, but usually in UC.
> 
> I'm asking this partly because I'm on Pentasa, and pretty much only that at the moment.  Doing OK, but wonder if I could be doing better, and I don't want to be a ticking time bomb either.  I'd be interested if perhaps another mesalamine would work better for me.  My guess is that I was prescribed Pentasa to start because my GI might have hypothesized that I had other inflammation elsewhere in the small intestine, based on the fact that I had some stomach pain from duodenal ulcers happening before my diagnosis.  (An MRI later revealed that the rest of my small intestine didn't have any additional inflammation beyond the TI, so that was good.)
> 
> Gotta love the medication guessing game.


As David has says Asacol is supposed to release at a PH of 7 , this actually proved an issue for me as I was taking Wheat Grass tablets to help with acid . This changed the PH in my stomach and probably my intestine also so using Asacol was problematic. I stopped with the Wheat Grass and was taking 4x800mg Asacol a day and inside a few weeks the D had nearly stopped and the bleeding had gone. Im left with constant pain in the LRQ which never stops and long periods of just feeling like a train wreck but its the best of a bad job I think. I have gone back on the Asacol again to try to bring things under control again as my Doctor says "you had all the test and they cant say anything definite apart from inflammation of the TI and possibly an inflammed Appendix" If the Asacol works for you then keep taking it , he said. So Thats what I do , I have read loads about the beliefs about it working or not , personally I could not live or work with out it . 
I think how or where the Asacol is released is going to be specific to your body and its acidic level;s at given places ie Stomach ,TI and anus. 
My Doctor maintains its for the Colon and not the TI,  but I would surprised if he new where that was. 

Good luck :rof:
Peter


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## ellie

I've been thinking about this thread quite a bit (pentasa is the same as sulfasalazine, I think?)
I'm taking 3gm/ day - initially prescribed as 1.5 gm BD, but 1 gm TDS seem to maintain an even keel a bit better for me.
I understand it's an essentially topical treatment - I think 2 key issues in choosing  appropriate treatment regimes are the location and the severity of the individual person's disease. I have Crohn's colitis(with subsequent severe iritis)
On initial diagnosis I commenced tapering oral prednisone and low dose 6mp while waiting for enzyme metabolism analysis. When that was normal I started increasing the 6mp as instructed, but felt significantly less well. I had also been doing a lot of reading of the medical literature by that stage, and felt the intestinal side of my CD really wasn't that severe..
After changing GI consultants I stopped the 6mp, and began maintenance sulfasalazine.
I suspect it's all about relative balance - my GI system is pretty quiet with the topical "lotion".. if my gut is fine my eyes are ok; and as for the grumbling joints, well I'll work around it! 
For me, a more "systemic" treatment feels like overkill at this stage, but I recognize that it's all about balancing disease severity vs medication side effects
"If it ain't broken, don't fix it!!"

 HD


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## David

While sulfasalazine is a 5-ASA compound, it is not the same as Pentasa.  It's a sulfa drug (which many are allergic to) as it breaks down into 5-ASA and sulfapyridine in the colon.  It actually helps many with arthritis, it's too bad it's not helping yours


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## Sashawright

I was on it for 9 months. My new GI does not feel it was doing anything so she recommend that I stop taking it and will be switching to Imuran.


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## DennisD

Pentasa works for me. I found out the hard way when Insurance ran out. I ended up in ER with inflammation in the ileum. While I'm supposed to take 2Gms/day, I only take 1 and since I'm back on it, and it's all I take for my Crohn's, I'm feeling pretty good. 


Dennis


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## Sashawright

I went back on pentassa with the imuran and have just started humira.. seems like a lot,but I am hoping I can drop something soon!! I as having a pretty nasty flare, and GI felt it was time to move up to the next level.


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## Mia E

I find these posts really useful! I had surgery in April and was then diagnosed with crohns, the gi put me on 4g pentasa on discharge. I'm now having a flare and am on taper of prednisolone and it annoys me to think that the pentasa might have been like a band aid. The research that said 60% of people have leisions at the surgery site after 1 year is scary!!! 

My gi said we'll try prednisolone in addition to pentasa to treat this flare, see if it works, and if not then we'll try something else stronger than pentasa. What should I be asking for?

By the way, since I've dropped down to 25g of prednisolone I've had flare symptoms again, which makes me think I may have to go for the stronger meds option!


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## LondonSnow

I took my first normal crap in four months within just a week of starting Mesalazine. I'm usually the first to call something a coincidence, but I can't say that's what I'm seeing here.


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## David

LondonSnow said:


> I took my first normal crap in four months within just a week of starting Mesalazine. I'm usually the first to call something a coincidence, but I can't say that's what I'm seeing here.


I think it can definitely help some people, especially in the short term.  Long term use of only mesalamine in Crohn's Disease is VERY worrisome to me unless the patient is monitored EXTREMELY close.

With that said, in your story thread you stated:


> I was referred to the hospital and saw my gastro mid October, who sent me in for a Colonoscopy and MRI, both of which I had done within the last week. The Colonoscopy found indicators of UC, but the doctor said that Crohn's was more likely in my case, and the MRI's findings were also consistent with Crohn's.


If you do indeed have just Ulcerative Colitis OR UC and Crohn's (rare, but possible) then I would expect the mesalamine to work pretty well on the UC which could also explain your symptom improvement.


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## sid

David said:


> I think it can definitely help some people, especially in the short term.  Long term use of only mesalamine in Crohn's Disease is VERY worrisome to me unless the patient is monitored EXTREMELY close.


I was on pentasa for 2-3 months and did work...but then I stopped it and try to control the desease with diet changes and lifestyle, just as you do..and I still do great. Do you think its alright if I continue wothout pentasa cause i am more worried about about the side effects of it in a long run.


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## my little penguin

Ds was on pentasa for a month at dx.
It did nothing.
Moved on to stronger drugs.( 6-mp, Mtx , and now remicade).
We added asacol later since his disease is from one end ( esophagus to rectum).
Hoping it would at least treat the rectum / colon while trying to figure out a better systemic med for the rest of his gut.
Now that remicade is working the Gi suggested dropping the asacol once we know he is stable in a few months


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## David

sid said:


> I was on pentasa for 2-3 months and did work...but then I stopped it and try to control the desease with diet changes and lifestyle, just as you do..and I still do great. Do you think its alright if I continue wothout pentasa cause i am more worried about about the side effects of it in a long run.


The side effects of Pentasa are pretty negligible.  Certainly less than un-managed Crohn's disease.  If you're not on ANY medications then I personally would suggest utilizing it as it's better than nothing for sure.  But if you're not comfortable with it, discuss your feelings with your doctor and see what they come up with.


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## sid

David said:


> The side effects of Pentasa are pretty negligible.  Certainly less than un-managed Crohn's disease.  If you're not on ANY medications then I personally would suggest utilizing it as it's better than nothing for sure.  But if you're not comfortable with it, discuss your feelings with your doctor and see what they come up with.


but your previous post said that you would be VERY worried if you had to use mesalamine for a long time.


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## hawkeye

Interesting information...I asked my GI about this last year (on both Salofalk and Imuran)and basically the thinking is that the Imuran is more effective than the Salofalk  I recall that he mentioned that there is some thinking that the Salofalk limits the potential polyp growth.

Interesting on the Leukopenia that may occur with both Imuran and 5-ASA, my white cell count went up after they upped my Imuran dosage to 200 mg/day, and the dosage was dropped to 150mg/day.


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## David

sid said:


> but your previous post said that you would be VERY worried if you had to use mesalamine for a long time.


I'd be even more worried if I had Crohn's disease and wasn't on any medication.  

When I say I would be worried about long term use of mesalamine, not because of the side effects, but because it just plain doesn't hold the disease off long term for the vast majority of people.  If someone is only on Mesalamine, they need to be monitored VERY closely for uncontrolled inflammation.  Of course, everyone should be for that matter.


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