Mesalamine for the Treatment of Crohn's Disease according to Dr. Marc E. Schaefer

[David]

I recently asked our panel of experts:

What is your opinion on the use of mesalamine in Crohn's disease? Should it ever be the only medication someone with Crohn's disease is put on? If yes, what study or studies do you feel support this treatment choice?

Dr. Marc E. Schaefer, MD, MPH of the Penn State Hershey Inflammatory Bowel Disease Center took time out of his busy schedule to answer this question. A little about Dr. Schaefer:

Marc Schaefer is a board certified pediatric gastroenterologist who has been practicing at Penn State Hershey Children's Hospital since 2009. Dr. Schaefer is active in inflammatory bowel disease clinical research at Penn State Hershey Medical Center, including participation in the Pediatric Inflammatory Bowel Disease Collaborative Research Group Registry, the PROKIIDS Pediatric Inflammatory Bowel Disease Research Network, and ImproveCareNow, which is a health network focused on quality improvement in pediatric inflammatory bowel disease. He also participates in the Hershey Medical Center IBD support group. Dr. Schaefer received his medical degree from Sackler School of Medicine-New York State American Branch. He completed his pediatric residency training at Maimonides Medical Center, Infants and Children's Hospital of Brooklyn and Pediatric Gastroenterology and Nutrition fellowship and Masters in Public Health at Hasbro Children's Hospital/Brown University Medical School.

In regards to the question, Dr. Schaefer stated:

The role of mesalamine in inducing remission of active Crohn's disease and preventing relapse is uncertain. In patients with mild disease, mesalamine is used as monotherapy and it is difficult to predict which patients will do fine on mesalamine monotherapy for a prolonged period of time and which patients will develop a relapse. In patients with moderate to severe Crohn's disease it is felt that other therapies, such as corticosteroids and biologic therapies, are more effective for inducing remission (1). There are at least four studies (2-5) that report a benefit of maintenance therapy with 5-ASA in quiescent (inactive) Crohn's disease. The majority of meta-analyses, including the most recent systematic review of the Cochrane central register of controlled trials reported no benefit of mesalamine over placebo, as well as mesalamine not being effective in preventing quiescent Crohn's disease relapse (1). The most recent Cochrane database systematic review (6) reports a benefit of sulfasalzaine inducing remission in patients mainly with Crohn's colitis (7).

1. Ford AC, Kane SV, Khan KJ et al. Efficacy of 5-aminosalicylates in Crohn's disease: a systematic review and meta-analysis.
Am J Gastroenterol 2011; 106:617-29.
2 . Camma C , Giunta M , Rosselli M et al. Mesalamine in the maintenance treatment of Crohn’s disease: a meta-analysis adjusted for confounding variables . Gastroenterology 1997 ; 113 : 1465 – 73 .
3 . Messori A , Brignola C , Trallori G et al. Eff ectiveness of 5-aminosalicylic acid for maintaining remission in patients with Crohn’s disease: a metaanalysis . Am J Gastroenterol 1994 ; 89 : 692 – 8 .
4 . Steinhart AH , Hemphill D , Greenberg GR . Sulfasalazine and mesalazine for the maintenance therapy of Crohn’s disease: a meta-analysis . Am J Gastroenterol
1994 ; 89 : 2116 – 24 .
5 . Steinhart AH , Forbes A , Mills EC et al. Systematic review: the potential infl uence of mesalazine formulation on maintenance of remission in Crohn’s disease . Aliment Pharmacol Th er 2007 ; 25 : 1389 – 99
6. Lim WC, hanauer S. Aminosalicylates for induction or response in Crohn's disease. Cochrane Database Syst Rev 2010; 12:
7. Hanauer SB, Sandborn W. Management of Crohn’s disease in adults. Am J Gastroenterol 2001;96(3):635–43.

Thank you to Dr. Schaefer for his time and expertise!

 

[PVail]

Can I just say that this again leaves me bewildered about this treatment.
So it also leaves me wondering about the whole putting a name on IBD ie Crohns . Time and time again I hear that Asacol doesnt work for Crohns/IBD . So its proved it doesnt work .
So im trying to figure out what the difference is between inflammation that it does treat and inflammation that it doesn't. Does this have a name. This is very confusing doctors perscribing a medication for A, a condition that they know it doesnt work ( according to the studies) B for inflammation that has no origin or name ( ie what I have ) .
So if i dont take it I have all the symptoms of IBD . and when i do take it along with pain meds I have greatly reduced symptoms.
There seems to be a very grey area with all these studies. So if it just controlling my symptoms and if the inflammation is a disease ,then is it slowly causeing damage over a long period.
Three years now ive been on this med and I cant function with out it , and i have tried . Done the diets and yes they do have there uses when your going through a flare but is all this not a band aid on a gun shot.
I just find it hard to just accept that there seems to be no progress with this even with all these studies. How much money is spent on medication that the doctors dont even believe works. I dont mean to rant but i read all these studies when I can and looks like going round in circles.

My thought s on all of it. IBD is purely mans making . Treating crops with chemicals, feeding animals chemicals , treating our food with chemicals . This cocktail is the source of all modern gastro diseases and probably many other terrible illnesses too.
Just look at the latest meat scare regarding Horse meat . How many years have we been shoveling mr Ed down our throats saying thats a nice steak . When its actually a meat of no history , more than likely full of antibiotics and god knows what else.Our immuine systems are in a mess and is it any wonder. We need to step back and sort the source out first and maybe then they can treat us for what is actually wrong.
Sorry rant over.
Peter

 

[rygon]

Excellent response, although it took me a while to understand what he was saying. Is it possible to have it translated into layman's terms as well please (whilst keeping the original script).

 

[David]

Excellent response, although it took me a while to understand what he was saying. Is it possible to have it translated into layman's terms as well please (whilst keeping the original script).

The role of mesalamine in inducing remission of active Crohn's disease and stopping it from coming back is uncertain. In patients with mild disease, mesalamine is used by itself and it is difficult to predict which patients will do fine just on mesalamine for a prolonged period of time and which patients will flare. In patients with moderate to severe Crohn's disease it is felt that other therapies, such as corticosteroids (prednisone) and biologic therapies (Remicade, Cimzia, Humira), are more effective for inducing remission (1). There are at least four studies (2-5) that report a benefit of maintenance therapy with 5-ASA (mesalamine) in quiescent (inactive) Crohn's disease. The majority of reviews of a bunch of studies put together, including the most recent big review of the Cochrane central register of controlled trials reported no benefit of mesalamine over placebo (fake drug), as well as mesalamine not being effective in preventing inactive Crohn's disease relapse (1). The most recent Cochrane database review (6) reports a benefit of sulfasalzaine inducing remission in patients mainly with Crohn's colitis (7).

So basically a few studies found that mesalamine helped keep inactive Crohn's disease inactive. But when a bunch of studies were all reviewed together by some really smart dudes who do lots of good analysis, it turns out you might as well be taking a sugar pill instead. Sulfasalazine does ok for Crohn's Colitis.

That help?

 

[rollinstone]

I'm wondering what the point of me swallowing 4 1g pentasa pills every day is... I guess maybe if your on other medication like imuran it can't harm? I know it can raise 6tg levels. Maybe that's why some docs throw it in the coctail, still very frustrating.

 

[alex_chris]

I'm wondering what the point of me swallowing 4 1g pentasa pills every day is... I guess maybe if your on other medication like imuran it can't harm? I know it can raise 6tg levels. Maybe that's why some docs throw it in the coctail, still very frustrating.

True, it can't really harm you if you go for it IN ADDITION to immunosuppresives. Once you are on immunosuppresives and biologics or just biologics, it probably really doesn't make any sense any more to go for 5-ASA in addition.

I was on 5-ASA for 4 years back from 1999 to 2003 and it didn't help a bit.

Also on the topics of putting all Crohn's patients into one basket, I agree with one of the posters above, that really doesn't make an iota of sense. I see things this way, there is an overarching condition which we may label IBD. But then there are more then a dozen different sub-forms of IBD. What we currently view as Crohn's is actually a mixture of different forms with different concentrations and different sympthoms and things that can be used to treat IBD.

And that's why 5-ASA actually works for some Crohn's patients (not many) and not at all for others. People just don't have the same illness, it has little to do with "mild" vs. "severe" Crohn's.

Anyway, I am in good remission, but lately I have wondered whether I should try 5-ASA once more in addition to aza and see if it helps keep me in remission for another year.

 

[nogutsnoglory]

It's possible that mesalamine is effective in Crohn's for those who have inflammation in their colon. If it works in the colon for UC I don't see why it wouldn't apply to Crohn's. As to any impact on the small intestine it's probably little to none. I have been on Pentasa and now Apriso but who knows.

 

[David]

Because Crohn's is transmural (affects every layer of the intestine) whereas UC only affects the mucosa (top layer). Mesalamine is only topical (affects only the mucosal layer).

 

[nogutsnoglory]

I didn't realize that was the case with UC. My doctors think I have inflammation on top of my scar tissue so hopefully the mesalamine will melt away that first level of inflammation. Anyways, great post.

 

[prettykitty]

To follow on what alex_chris said above... it is important to remember that statistics don't always apply to individuals.

I have been on pentasa only for mild Crohn's since 2009, and it has worked well for me. I went from having diarrhea every day to having it once every couple of months. Last summer, I asked my gastroenterologist about the recent review papers suggesting that pentasa is ineffective for Crohn's. His response was that it seems to be working for me. But he agreed we could at least cut my dose back. Since cutting my dose in half, I went from 1 episode of diarrhea every 2 or three months to 3-5 episodes per month.

So I'm not saying that mesalamine is great, or that pentasa works for people with mild disease. I'm saying only that it works for me, and I have Crohn's. Statistics are important for getting a broad idea of how well something works on average and for informing clinical decision-making, but the application of that information to individuals is much more complicated, and it needs to be taken in context with the individual's personal circumstances and clinical picture.

 

[David]

I really need to come up with a better explanation for mesalamine. Let's try this one.

Let's say that you have a pile of coal 10 feet thick. That pile of coal catches on fire so you start to spray it with a fire extinguisher. However, only the top 1 foot of the coal is being extinguished and the bottom 9 feet are still smoldering and very hot. When close to the pile of coal, it feels much cooler because the top layer of cool is not currently on fire. Is the fire out?

That coal is your intestine and the fire extinguisher is mesalamine. Yes, mesalamine can knock down the top level inflammation. However, the fire is still burning deeper because Crohn's disease affects all 10 feet of coal and mesalamine only affects the top 1 foot of it.

Yes, mesalamine can reduce the fire. But that smoldering fire can cause bowel damage over time and that's when your mild Crohn's disease turns into severe Crohn's disease. Short term I do believe that mesalamine can help reduce symptoms. But the goal of treatment of Crohn's disease should be deep remission with full mucosal healing for long term bowel health. Feeling good now and a resection in seven years isn't acceptable to me.

Mesalamine is approved for use in Ulcerative Colitis because Ulcerative Colitis only affects that top layer of coal. Mesalamine can can put that fire out.

I have nothing against the use of mesalamine in Crohn's disease when it's utilized in conjunction with other treatment options. When it comes to Crohn's disease, I feel fire extinguishers, water, bulldozers, and fire retardent dropping bombers need called in. Mesalamine by itself is scary to me because I want to see the whole fire out as quickly as possible. And far too often when people just use the fire extinguisher, the fire isn't being monitored properly to make sure it isn't about to get out of control.

PrettyKitty, how often do you have your fecal calprotectin level tested and how has it fared on Pentasa?

 

[prettykitty]

My GI does not routinely test my fecal calprotectin level.

 

[David]

And that's the problem You're taking a medication that isn't proven to be efficacious for inducing remission in Crohn's disease and you're not being monitored with probably the best, non-invasive test to determine levels of inflammation. Yes, your symptoms might be greatly reduced, but if you have chronic inflammation, then, over time, that can lead to serious complications.

Now, maybe some people do extremely well on mesalamine and it does control their Crohn's disease. If a doctor feels strongly that someone should only be on mesalamine and closely monitors CRP, ESR, fecal calprotectin, etc to showcase that yes indeed the inflammation is gone, then ok. But to put someone with Crohn's disease on just mesalamine and then not monitor them very closely is extremely concerning to me.

 

[rollinstone]

I agree w David 100% here, next time you see your GI ask for a FCP to be done, if it comes back above 50 there's some inflamation present. Although you may not be having any symptoms, it's best to get rid of the inflamation because if it's there long enough it can cause structuring, amongst other problems. On the flip side of that, if it comes back below 50 then you would be considered in biochemical remission, and if that's the case and pentasa is the only med your on it's working wonders for you.

 

[lizbeth]

Thanks everyone, this thread has been really helpful.

Currently I'm only on pentasa, but having awful symptoms. I had a small bowel series a couple of weeks back to check for strictures, haven't had the results yet though, in the meantime I have been trying to learn about the different meds (only diagnosed fe months ago). The thread has given me a better understanding of what's going on in my tum and helped me conclude that pentasa is not enough on it's own.

Thanks again.

 

[Cat-a-Tonic]

David, does Microscopic Colitis affect just the mucosal layer or the full thickness of the colon? As you know, I'm still undiagnosed - GI feels I have some form of IBD, and it's likely either Crohn's or MC. I'm with PrettyKitty in that I'm on just mesalamine, and it works well for me. If I stop taking it/cut down the dose, then my symptoms start coming back too. I'm not on any other meds for IBD as my GI feels I need a firmer diagnosis before we try anything stronger - but so far 2 years and counting in remission, thanks to mesalamine. So I guess what I'm asking is, if I respond that well to mesalamine long-term, does this mean it's more likely that I have MC as opposed to Crohn's?

 

[Sarah50]

I feel I fit into one of those that *thought* I was in 'remission' because all of my bad symptoms of Crohn's went away after being on Asacol and a low residue diet - since December 2012. After having a similar discussion with David about 'remission' and Asacol, I did as he suggested- I had to beg my primary care doctor to order a fecal calprotectin test to see if I really was in remission, since my GI didn't want to do any tests ... UNLESS I HAD SYMPTOMS!!! I could cuss my head off right now about HIS response!!!!!!!!!!

The test came back over 900 and 'normal' is 0 to 50!!! I have an appointment with my GI at the end of May - couldn't get in sooner and also asked to be referred to a different GI and just kept that appointment in case I can't get in with the other GI within a month.

My question - I assume I should ask my GI to put me on an immune suppressant because of the calprotectin test and if so, which one? I appreciate any and all feedback!

Thanks, David, you were right!

 

[David]

I'm sorry to hear about your elevated calprotectin level Sarah I wish this was one of those situations where I was wrong. I'm glad you got it tested though.

Your new GI may want to try you out on azathioprine on 6-MP. If so, I'd request that they do TPMT testing first to help optimize your dosing. Or they may want to go straight to a biologic such as Humira, Remicade, or Cimzia depending on many variables. As low residue helps you a lot, I'd strongly suggest you explore the juicing forum and incorporate juicing into your treatment regimen.

 

[nogutsnoglory]

Sarah that is upsetting about your GI not wanting to order the stool test. Why does it bother them? It's not like you are asking for it on a weekly basis. Geez some of these docs...

 

[Sarah50]

I'm sorry to hear about your elevated calprotectin level Sarah I wish this was one of those situations where I was wrong. I'm glad you got it tested though.

Your new GI may want to try you out on azathioprine on 6-MP. If so, I'd request that they do TPMT testing first to help optimize your dosing. Or they may want to go straight to a biologic such as Humira, Remicade, or Cimzia depending on many variables. As low residue helps you a lot, I'd strongly suggest you explore the juicing forum and incorporate juicing into your treatment regimen.

So I went to my old GI and his response to my calprotectin test was, yes we know you have inflammation... you have Crohn's. At this point, you tell me you have no symptoms, so it would be irresponsible of me to put you on azathioprine or 6-MP as these have serious side effects, such as lymphoma, which I've had a few patents contract and another contracted Lyme disease, etc. He even stated to hypocratic oath... "do no harm" which he feels those drugs are not appropriate for my level of Crohn's, at least at this time. He said everyone is different with their Crohn's disease. Some people have one episode or flare up and never have another one. Some people flare off and on. Some get worse and some don't. So because of that nature - that I may not have another episode, because I'm doing well, I should continue doing what I'm currently doing.

So, I'm not sure what to do. I was relieved to not be put on those drugs because of the 'possible' side effects. I still have no symptoms since being on Asacol from last November- all bad symptoms were gone within a month, along with a low residue diet. I am no longer on a low residue diet, I can eat anything and have no problems although I am now following Atkins to lose some weight. I'm now on Asacol HD 800 since the 400 mg was discontinued. So I'm just not sure unless I see something substantial about the calprotectin test being indicative of remission which I couldn't find researching it. Does anyone have information on this test being indicative of remission? I'm wondering if it's 'natural' to have inflammation with Crohn's ongoing with that test?

 

[helena101]

I think a Calprotectin of 900 is on the high side. As far as I know, my doctor, who asks me to check it routinely, is happy when its under 100. Even under 200 is ok, he considers it "near-remission" with mild inflammation present. My doc is definitely not in favour of drugs, but is of the same opinion as David, that its best long-term to keep inflammation under tight control. I can definitely see your dilemma though.

For the purpose of the general discussion, I only treat with mesalazine (asacol) and some dietary restrictions. I also took budesonide, ciproxin and flagyl on diagnosis, followed by a month of EN, but since then (almost two years) I've only been on asacol. I have been in full remission for those two years. I test my Calprotectin levels monthly, I now have levels of <15. It doesn't get any lower than that. Twice I tried to stop taking asacol and my Calprotectin went up to >1800. When I resumed asacol it went back down to 100 in a matter of weeks. I am 100% certain that asacol, for now, works for me.

 

[DougUte]

I finally read this response and got the reaction I knew I would. My question isn't why doctors prescribe mesalimine. I want to know why Insurance companies make Crohns patients take it when their condition has been serious enough to cause a surgery? That happened to me. Insurance would not approve Humira until I spent 6 months on Asacol and proved it would fail.

 

[Gijimmy]

Hi, I have been a passive member of this forum for a while now and was prompted to read this thread by the chronicle email newsletter that was sent out.

I have found reading your discussions here very interesting. I too was diagnosed with crohns several years ago. Since, I have been taking ~5g of pentasa a day, reducing symptoms to the point where others would not know I had the disease. Symptoms return quickly when I do not take pentasa, particularly when stressed. I recognise myself that the placebo effect probably has a huge effect on calming symptoms as soon as a tablet passes my lips. However it works, so I inwill keep taking them!

I havent given much thought to the longer term. I do not have any sort of tests to monitor my crohns except an annual blood test to monitor the effect of the pentasa on liver(?) function. Generally I just try to get by and ignore it! Reading others stories here has made me think about this (I will probably still just try to ignore it!).

Finally i want to say thanks for all the hard work that clearly goes into this forum. As you know it helps far more than just those that post. Simply the fact that knowing you are not alone in having these problems is reassuring for many, so thankyou!

 

[ellie]

Fascinating thread.. I have a "mature onset", Crohn's colitis diagnosis, and am currently only "officially" taking Sulphasalazine 2.5-3gm daily. And fish oil/vitD/probiotics.. (Experimenting VERY gingerly with cutting back from 3gm daily at my GI's suggestion)
Currently well, and a follow-up colonoscopy several months ago showed normal mucosa, and essentially normal histology (no granulomas, and inflammatory cells at upper limit of normal)
Of course no-one can say whether I would have the same result without any Sulphasalazine, but in the array of medication available for CD, it does seem to have the least serious range of side effects, and may be doing something useful...


HD

 

[rollinstone]

Sulphalazine is supposibly more effective than mesalamine, I can't remember exactly why, from what I remember, it acts the same as mesalamine with an added beneficial mechacinism due to its sulphur make up... Can anyone chime in on why this is? I vaguely remember it being something to do with wiping out bacteria but I could be completely wrong

 

[Gutsy]

I was diagnosed with UC three years ago, then Crohns shortly after, and have been on messlamine for three years along with cholestryamine. I suffer every morning with diarrhea (5-7 on average) but otherwise live a pretty normal life and very thankful for that. Recently came down with Arthritis, taking Tylenol just to manage pain. I am reluctant to make any changes to meds because I think I'm used to what I'm on and worry the side effects of anything else would be worse. I am now completely confused after reading this thread if I should be taking the messlamine at all.

 

[ellie]

Hi Gutsy,
Is mesalamine the only Rx you're taking for Crohn's? If you're having regular moderate diarrhea AND developing arthritis, then it might be wise to have a consultation with your GI team. I think the mesalamine family of drugs is helpful for mild- mod colitis ( whether UC or Crohn's based) I have had arthritis and bad iritis as a result of Crohn's, but almost always when the colitis side of things is flaring.
I can also relate to your concern about side effects from other classes of drugs. I had an initial course of prednisone, and was started on 6mp initially, which I felt was somewhat heavy handed for the severity of my disease. A change of consultants led to starting on Sulfasalazine, which has in fact worked for me. I also got the impression (you would need to check this) that you could continue with full dose the 5ASA drug and add 6mp or imuran, possibly in less than full therapeutic dose, and achieve adequate control, but with less side effects risk

 

[CronoMush]

How often do you come across patients that are intollerant to forms of mesalamine?

I was on mesalamine tabs and then Asacol for a few months but then developped severe rashes on almost every part of my body (except my face). I stopped taking it over a few weeks (took two weeks to get over the worst but then some weeks more for all traces to clear) the rash subsisded. I was then put on Pentasa, but the rash started to return so I immediately discontined it. I still get itchy skin from time to time to this day and we are 2-3 years down the line. The thing is it didn't affect my Crohn's at all.

My symptoms are currently being managed by Asathioprine.

 

[Mimzim]

Fortunately, Asacol, now Lialda works for me! Let's break down the study. This study was a meta-analysis, meaning it compared results of numerous studies. Keywords in Dr. Schaefer's write-up are important.

Dr. Schaefer says in his opening sentence it is not certain if mesalamine is effective for inducing remission or preventing a relapse of moderate to severe Crohn's disease. What is important, is this is talking about moderate to severe flares. Also, IBD is incurable and not largely understood and people continue to have relapses, no matter their medication.

Dr. Schaefer's findings:

"When a patient is in a moderate to severe flare, it is difficult to induce remission with Mesalamine."

Looking at this forum, it seems difficult with any drug, to induce remission in moderate to severe Crohn's, since it appears there is not a one drug fits all method of relief. The study highlights other methods should be used for patients in moderate to severe flares.

Personally, in 2005, I was given more than the allowable dose of Asacol to put me into remission, but it took 3 months and 30lbs of weight loss and horrible pain. Finally, I was able to taper down to the active dose and eventually to the maintenance dose and stayed that way for 8 years. A clinical trial cannot exceed the maximum dosage.

Dr. Schaefer also discusses while patients are on mesalamine, they have relapses, but I believe relapses occur with every drug, since there is no cure.

The closing remarks of Dr. Schafer, if taken out of context of the preceding words, might be misleading.

The analysis of the clinical trials showed no benefit of the ASA over placebo, but you have to add in what he was discussing prior, in inducing remission and preventing relapse of moderate to severe Crohn's. This does not imply mesalamine is not an effective therapy as a monotherapy, or sole therapy, for mildly active disease.

It simply means for us all that mesalamine may work for some, if their Crohn's is in the mildly active stage, but may not work in moderate to severe flares, and you are likely to have a relapse, since IBD is uncurable and comes out of remission with flares.

I wish there were the miracle cure, but there isn't. My father had Crohn's, so when I had my first flare my GP put me on Asacol immediately and referred me out to a GI. The Asacol dose she gave me didn't put me into remission, but it helped. The pain was less frequent and I stopped losing weight so rapidly. I couldn't be hospitalized, because my husband was deployed and my children at home. My GI saw the Asacol was helping my symptoms, so he increased my dosage until it worked, and had me taper down once I was better. The dose was above the maximum dose, which cannot be exceeded in a clinical trial. He also checked my blood every week.

I learned what my food triggers are, and to increase the maintenance dose to active dose, if need be. It wasn't until my thryoid was off the charts and the fatgue came back that I found out I was in an active flare and have a stricture requiring surgery this time.

This forum is awesome and I love all of the resources. Our bodies are complex, individual, biological masterpieces that are our own. What works for one person may not for another, but we all learn from each other and continue the pursuit and hope for a cure! Or at least remission for now......

 

[Johnnysmom]

Mimzim,

Can I ask how you monitor your disease activity?

You mentioned blood tests, do you get fecal cal tests done regularly as well?

 

[David]

Thank you for taking the time to share your experiences with mesalamine Mimzim!

I learned what my food triggers are, and to increase the maintenance dose to active dose, if need be. It wasn't until my thryoid was off the charts and the fatgue came back that I found out I was in an active flare and have a stricture requiring surgery this time.

This is the paragraph I was wondering if would present itself as I read your story. And it is the paragraph I always worry about eventually presenting itself when I hear people stating that they've been on mesalamine for a short to medium amount of time. Do I feel that mesalamine can help control Crohn's Disease symptoms? Absolutely. Do I feel it can be an excellent medication as PART of a treatment regimen? Certainly. Do I feel it should be the only medication someone is on? Absolutely not. Because while it may decrease or even alleviate Crohn's disease symptoms, as Crohn's Disease is transmural (affects all layers of the intestines) and mesalamine is topical, there is usually chronic inflammation in the intestines that is not being controlled by the mesalamine and eventually it catches up with people and results in stricturing and other complications. Fibrotic strictures requiring surgery are the result of chronic inflammation. If you have a fibrotic stricture, you have had improperly managed inflammation for a long time even if you were asymptomatic during that duration.

The key with Crohn's is achieving deep, stable remission. While we obviously want reduction or alleviation of symptoms, there is no data I am aware of that supports mesalamine inducing deep, stable remission. As such, in my opinion, its place is as an adjunct treatment, not the primary.

 

[Mimzim]

Yes, I am followed by GI. I have only had to have fecal tests when I began a flare, which has only been twice. I had yearly colonoscopy and blood work until 2010 and when I didn't have another flare after 5 years, they put me at colonoscopy every five years, but then I flared after three. I still had annual blood work though.

Donna

 

[Mimzim]

David, I completely agree with you that Asacol has its limitations. I should have been advised to continue yearly follow-ups, since I have a flare and a stricture. After my surgery, my new GI and I will come up with a new plan. Will that mean a change in medication? I'm not sure. What I do know is I have a stricture. How long did it take to build? Why didn't my blood tests reveal this was on-going? Do other medications eliminate inflammation? How is this accomplished? How will my GI doctor figure out the fine line between not only asymptomatic, but being assured inflammation is not occurring?

The important issue for me with the article is it is important to look at the author's critical words, such as uncertain, moderate to severe Crohn's, inducing remission and maintaining remission. It appears in evidence based research, there isn't a medication that will eliminate flares for Crohn's. It also appears remission is difficult to obtain. It also appears that way in this community. What is the right answer?

I feel like as a patient, I'll be better informed because of this community. I'll also share my experiences. I'm not only relying on statistical, evidence based trials that are fantastic for contributing to the body of knowledge, but they are also limited by necessary controls and in this community we're not. We're evidence of real, everyday practice. I take it all in consideration and appreciate your response, because you're right something was missed with me, but with Crohn's, it is uncertain.

Cheers,

Donna

 

[David]

Hi Donna,

Thank you for your well-thought response. What is the right answer? I wish I knew for sure. And you're right, Crohn's is VERY uncertain and can be difficult to manage properly.

As you say, something was missed. I'd suggest you start by reading our wiki entry on the different forms of remission. You were likely in clinical remission. You MAY have been in biochemical remission since your blood tests were normal but I'm guessing you never had a fecal calprotectin test done. This is an EXCELLENT test for people with Crohn's disease to not only track inflammation but how you are responding to treatments. As you had a stricture forming, you were very likely not in endoscopic remission and you definitely weren't in deep, stable remission.

Can other medications eliminate inflammation? In some people, yes. As you say, Crohn's is uncertain which is why you need to be closely monitored. I believe that western medication is only part of the solution. I personally advocate the shotgun approach to treatment. For example:

- Western Medicine - Whatever your doctor recommends.
- Dietary changes - Improve your n3-n6 fatty acid ratio, Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot and we now have a juicing subforum located here.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a big fan of Low Dose Naltrexone. Two studies in adults and one in children have had great results (see the stuck thread when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, and magnesium as well as a host of others. But those three first ones should definitely be checked. Do not blindly supplement vitamin D and B12, treat these as medications and get your levels tested first. Although the blood test for magnesium is pretty useless and I strongly suggest you eat foods high in magnesium or discuss supplementation of it with your doctor.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas. I'm personally a big fan of tumeric (curcumin) and strongly suggest utilizing it if your doctor is ok with it.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above. But in the end, it's about finding that combination of treatments and lifestyle changes that allow you to reach deep, stable remission.

 

[Mimzim]

Wow! What an amazing, informative post, David! I cannot wait to look over all of this and also include my GI in on it. He believes in collaboration.

Thank you so very much!

Donna

 

[Nancye50]

So happy I found this thread, thanks for all the info. I'm dreading going on Imuran because of the side effects but I am also worried about future problems after this first perforation.

 

[bam143]

So grateful for this thread. Diagnosed with Crohn's in October 2015, although have been dealing with it for 20+ years. On my second round of Prednisone and Lialda. Trying to taper both now.

Thank you, David, for all of this information!!! Very helpful!

 

[Rich Pell]

The information shared in this thread hits home for me since being dx with CD 4 months ago and recently started on Apriso.

After initially taking Entocort for 60 days, I was prescribed Apriso 2 weeks ago for a 5 month regiment since the results of my last scope in February indicated my CD has spread and is now deeper.

5 months on Apriso does not sound like time well spent from a tx standpoint.

Based on the information in this thread it certainly does not sound like taking Apriso by itself is the correct treatment course for me. Like everyone else I want to have sound tx decisions made at this early stage.
This discussion also gives me more feedback to seriously consider changing docs.

David would you know of any recent developments to support or discount the findings of this 2013 data?

Regards