Do any of you have success stories with Mesalamine?

Hey I'm new to the forum and just really want to get some insight into my condition.

My doc currently put me on mesalamine and while it's effective right now I just worry that it won't be enough in the long run.

Do any of you have stories about starting on mesalamine, maybe going through some serious immunosuppressants, and then going back onto mesalamine and continue taking it while on remission?

I have been taking Lialda (mesalamine) for just over three years since diagnosis and had been flare free and "the picture of health" according to my doc after my last colonoscopies.. up until this past summer (Almost exactly three years after diagnosis) when I had a pretty bad flare, which I was given prednisolone for for a week and I was doing great until a couple weeks ago when now I'm flaring again, so my doc is afraid the mesalamine is not cutting it anymore But I did have a great few years of remission with it, I wouldn't be against it. And I also wouldn't want to start on a stronger drug unless necessary, personally, so I'm happy I started there. I guess as you say maybe I'll have to go on some immunomodulator now and then back to mesalamine maybe? I'll keep you posted!

I'm taking Sulfasalazine 2.5gm per day, and am technically in remission (decreased the dose from 3gm daily a few months ago at my GI's suggestion. He suggested going down to 2gm daily, but I'm taking it VERY slowly.. No point inviting trouble!)
The other possibility if the 5ASA family aren't quite enough may be staying on Mesalamine and adding a low dosage of Imuran or 6mp until your Crohn's is under control (talk to your GI - I was very reluctant about immunosuppressive agents, and my GI seemed to indicate this was an option)



HD

Ten beautiful years of remission on Mesesal.
Two years into a bad flare now though and on Humira.
I would dearly love to be able to go back.
I miss it

Not sure how many years at this point, but I was on it on and off when I was a child up through adulthood until my disease progressed to peri-anal.....

That's interesting Pasobuf.
I had to stop it too when my disease became peri-anal.

ellie said:

I'm taking Sulfasalazine 2.5gm per day, and am technically in remission (decreased the dose from 3gm daily a few months ago at my GI's suggestion. He suggested going down to 2gm daily, but I'm taking it VERY slowly.. No point inviting trouble!)
The other possibility if the 5ASA family aren't quite enough may be staying on Mesalamine and adding a low dosage of Imuran or 6mp until your Crohn's is under control (talk to your GI - I was very reluctant about immunosuppressive agents, and my GI seemed to indicate this was an option)



HD

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So ellie, have you ever done the combo mesalamine and an immunomodulator? I think that is what my doc is thinking of doing. I never wanted to have to try immunosuppresants but I know I should consider myself lucky I avoided them as long as I did..

Haven't had to try them as yet, but if the aim of the exercise is disease management with minimal side effects, then it sounds like an entirely sensible option to me! My conversation with my GI seemed to indicate it was ok to combine them - my thoughts would be to use the minimum effective dose of immunosuppressant meds...


HD

I have been on Mesalamine (Pentasa) off and on for over 15 years. It has been the most successful drug for my Crohn's.

I started taking it while it was fairly new and would take it during flares and it helped expedite remission. After a string of mild flares I started taking it successfully for maintenance. The only side effects I get is no appetite, and a tired crappy feeling for 2 weeks or so when I start taking it after an extended break.

The only down side to the drug is the price. There is not yet a generic (although it has been 20 years that it has been out so other drug companies can now make a generic). During times when I did not have insurance I had to off of it because of the price.

I have to say this is the best and most effective meds for my Crohn's.

ellie said:

I'm taking Sulfasalazine 2.5gm per day, and am technically in remission (decreased the dose from 3gm daily a few months ago at my GI's suggestion. He suggested going down to 2gm daily, but I'm taking it VERY slowly.. No point inviting trouble!)
The other possibility if the 5ASA family aren't quite enough may be staying on Mesalamine and adding a low dosage of Imuran or 6mp until your Crohn's is under control (talk to your GI - I was very reluctant about immunosuppressive agents, and my GI seemed to indicate this was an option)



HD

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Ellie.

I would be cautious taking Imuran with 5-ASA's long term.
I remember seeing a report somewhere that this combo had links to some nasty blood disease...Unless the Imuran dose is low enough. Certainly worth mentioning it to your doc and researching it.

I have ileitis (Crohn's confined to terminal ileum). My understanding is 5-ASA/ mesalamine is considerably less effective for ileitis than Crohn's colitis. I posted elsewhere about my GI's desire to put me on an imunomodulator. For reasons I won't go into here, I'd prefer to buy some time with a less aggressive treatment such as 5-ASA/mesalamine.

I imagine it would be very helpful to others as well as myself if you were to indicate whether your Crohn's is the ileitis or colitis type if you did in fact experience success with 5-ASA/mesalamine, even if just temporarily.

Thanks much for any such info.

frank246 said:

I have ileitis (Crohn's confined to terminal ileum). My understanding is 5-ASA/ mesalamine is considerably less effective for ileitis than Crohn's colitis. I posted elsewhere about my GI's desire to put me on an imunomodulator. For reasons I won't go into here, I'd prefer to buy some time with a less aggressive treatment such as 5-ASA/mesalamine.

I imagine it would be very helpful to others as well as myself if you were to indicate whether your Crohn's is the ileitis or colitis type if you did in fact experience success with 5-ASA/mesalamine, even if just temporarily.

Thanks much for any such info.

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I was diagnosed with Crohn's ileitis (confined to terminal ileum) Nov 2012. My GI put me on Asacol 400 and low fiber diet. Within a couple of months, ALL of my symptoms disappeared. When Asacol 400 was discontinued, he put me on Asacol 800 HD. I haven't had any flares or problems eating anything to date while taking Asacol.

When I was first diagnosed I got TPN feeding, then I was put on pentasa, I stayed well for like 3 years without symptoms.

What pentasa can't do is get you into remission when you're flaring badly, it's a very mild type of medication, I tried it enough times to know pentasa isn't very powerful. It's for mild crohn's disease.

Sarah50 said:

I was diagnosed with Crohn's ileitis (confined to terminal ileum) Nov 2012. My GI put me on Asacol 400 and low fiber diet. Within a couple of months, ALL of my symptoms disappeared. When Asacol 400 was discontinued, he put me on Asacol 800 HD. I haven't had any flares or problems eating anything to date while taking Asacol.

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One more example how the general guidelines don't always apply about what treatment is best for each Crohn's case. Sarah, happy to hear your success with a relatively mild treatment. Encouraging to me, also. Thank you for your response. :smile:

frank246 said:

One more example how the general guidelines don't always apply about what treatment is best for each Crohn's case. Sarah, happy to hear your success with a relatively mild treatment. Encouraging to me, also. Thank you for your response. :smile:

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My pleasure, Frank. I guess the reason it works for me is because my Crohn's disease is in the terminal ileum area and Asacol releases mesalamine in the terminal ileum.

When I was first going through this and posted about being on Asacol, some people said it really wasn't a medication for Crohn's - it's for Ulcerative Colitis. So I researched and read on several Crohn's forums (including this one) many people giving testimony to being on Asacol for years, even a decade, and having their Crohn's stay in remission. Perhaps all or most of the people that take Asacol and have success, have Crohn's in the terminal ileum as well. That would be my guess.

BUT - I have no idea if it has stopped inflammation, if I am in "deep clinical remission". My GI didn't want to put me on a stronger drug - he said it wasn't needed as all of my symptoms disappeared and the stronger drugs can have severe side affects. I don't know if this is a good thing or not, without knowing if the inflammation has stopped. Best of luck to you.

I have a GP appt Monday before a 3/19 GI appt and I'm hoping she's looked over my CT well enough to tell me where my inflammation is. I am hoping Pentasa will be a good place for me to start med-wise. Glad so many of you have had success.

Mesalamine alone? No. It's not the best treatment for Crohn's disease as it's topical yet Crohn's can cause inflamation deeper in the intestinal lining where the medication will not reach. It's best to use a combination of different medications and treatments to get yourself into remission as quickly as possible and stay in remission on that treatment. Mesalamine medications have been helpful for me when combined with 6MP as I also have some colon involvement (keep in mind that Mesalamine treatment was designed for UC so doesn't work as well with Crohn's). Further reading