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Crohn's Disease Forum » Treatment » 5-ASA/Mesalamine » Mesalamine does nothing!


10-11-2010, 09:30 PM   #1
realtormatt
 
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Mesalamine does nothing!

Okay now I have had Crohn's for over 10 years. The very first drug my GI put me on was Asacol. I have never thought it to do much, but my GI seems to love this drug. Every time I have flared he has upped the dose. At one point I was taking about 9 pills of Asacol a day.

For the past year I have been taking Lialda, because I was complaining of taking so many pills a day. With lialda, apparently you take less pills to get the same dosage of mesalamine. So when recently I started to not feel as good he wanted me to add one more pill to my daily dose.

This stuff is expensive, I was spending about $150 for a 3 months supply. So finally I ran out and decided I was not going to refill my script. What has happened? NOTHING, nada, zero for the worst and actually I feel better, but that may have been adding the Kefir to my diet.

So right now I am doing my humira every other week, I take prednisone every other day at 20mg, and then my kefir, fish oil, multivitamin, VSL#3.

Somewhere a while ago I read the sulfa drugs which I thought mesalmine was, was harmful to the bacteria in your GI track and I would assume both good and bad, but could never find the article again.
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10-11-2010, 11:01 PM   #2
effdee
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Mesalamine didn't do anything for me, either, even at 12 pills a day. They aren't small capsules, either!

You live in Baltimore? I'm just a bit south in Pasadena.
10-12-2010, 01:06 AM   #3
Rebecca85
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Mesalamine is not exactly a sulfa drug. It's sulfalamine with the sulfa removed, so I don't know if it would have the same effect anyway. But yes, mesalamine is only really suitable for mild cases. If your disease is bad enough to need biologics and steroids, it probably ain't gonna do anything! In my case, pentasa stopped my symptoms getting worse as I tapered the steroids, but I needed the aza for that final push into remission.
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10-12-2010, 08:23 AM   #4
realtormatt
 
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Well that makes sense, that the sulfa is removed. I am not sure what you would consider my case of crohn's. My GI always describes me of mild to moderate. In 10 years, I have been lucky enough to never be in the hospital or have any surgery. He is big on the biology drugs for even maintenance.

Effdee, I am just north of the City close to Towson. I have family in Linthicum and Crofton. My cousin is AA County Police.
10-12-2010, 08:53 AM   #5
Milehigh
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I cut my Lialda and Imuran in half because I was doing so well - Then I had a huge flare-up that I'm still batteling. So I guess it did something for me! Glad you get to save $$ and get off one more med. That was my goal. I just started Humira. I'm hoping I will be able to cut down on the Imuran at least. I don't like that stuff. Or, I guess I should say my immune system does not like that stuff.
10-12-2010, 09:11 AM   #6
NatalieMT
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Pentasa did nothing for me either, so I sympathise. Hopefully the Humira will work for you soon!
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10-12-2010, 09:14 AM   #7
Crohn's 35
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Pentasa is expensive and works in mild to mod cases. I do know you are not suppose to break them up. They can't have the sulpha in them because I am allergic to sulpha. Humira should of been doing the trick... sorry you are in pain. Get well soon!
10-12-2010, 03:37 PM   #8
foxylady
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i am on pentasa and hasnt changed anything yet, seeing my consultant on Monday
10-12-2010, 04:18 PM   #9
jillyCD
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i'm newly diagnosed and put on pentasa to start. i'm more miserable than before - horrible adbominal pain and alternating constipation and d - and i've lost about 1/4 of my hair (totally freaking me out). and i almost passed out when i got the price for my script! the doc stopped it for now and i go back in a couple of weeks.
10-13-2010, 08:47 AM   #10
lynx
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Yeah Im on Asacol too at 12 pills a day...was supposed to be taking that dose daily but when i went into remission I would stop taking the medicine altogether...not such a bright idea...It does work for mild to moderate UC and Crohn's in a lot of people. And it has in the past worked for me without the possible nasty side effects of steroids or the biologics. It has some weird side effects like the hair loss, which came back when I stopped taking it, and now that i am on it again I have noticed no hair loss at all. The patent for Asacol expires in 2012, not a hell of a lot of good that does anyone now but by then a generic will become available and the drug will be a lot less expensive.

As this is the "beginning" treatment for this disease my only hope is that I am still able to manage my symptoms..(thinking about trying the hookworm thing) with asacol by 2012 instead of being on biologics or another more aggressive therapy.

I am finding out as Im sure a lot of people are aware...treatments are not universal. Pain management, symptom suppression, diet and everything to do with your body is unique to you. Fortunately there are several paths out there...although most of them cause unwanted side effects and troubles of their own.

Hopefully, one day someone will figure it out and be able to eliminate this from our lives permanently. Heres to hope!
10-13-2010, 09:03 AM   #11
NicoleKS
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I took 12 Asacol pills a day--did nothing for me. After 3 months on it my Gi finally told me I could stop taking it. Who hoo.
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Symptoms of Crohn's: 17 years
Officially Diagnosed: July 8 2010 with Crohn's of the ileum.
Current IBD meds: 12.5mg Methotrexate weekly, Lomotil, Baclofen and Roxicodone as needed.
Failed IBD meds: Asacol, Entocort, Prednisone, 6MP, Humira, Remicade, Azathioprine, Librax.

Symptoms are still uncontrolled.
Fistula developed January 2011.
Resection on February 3rd, 2011.

My poor gut and my poor butt!

10-13-2010, 11:47 AM   #12
MikeinBklyn
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Agreed,

16 pills a day and no real effect.
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10-13-2010, 11:57 AM   #13
2thFairy
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I'm allergic to sulfa, so I was relieved to at least have Pentasa and Lialda as a starter. However, Pentasa didn't quite cut it and Lialda, which is the same stuff but in a releases it in a slightly different way, was great for about three months and then just quit working. I don't understand why the effect wore off so quickly.
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