Mesalamine Frustration...

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sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 5/28/2008 12:06 PM (GMT -7)   
Hi guys,
 
I've been officially diagnosed for over 3 years with Crohn's colitis.  The first rx I was given was Asacol, which I am still on.  Over the years I've been on 4 - 12/day, up & down.  I never felt a difference until I was given Imuran & it kicked in.  I feel better but I have lots of bad days & don't feel great.  I have big doubts that the Asacol is doing anything for me.  My GI, last week, insists that it's doing "something" but I hate the idea of taking so many pills if I'm not feeling any results. I've never not listened to my doctor but he seems insistent that I stay on it (I kinda stopped taking it last week...)  He mentioned Colazal once to me but seems to have forgotten.  Any advice??


Crohn's Colitis - officially diagnosed Feb. 2005
(Asacol, Imuran, Folic Acid, Iron, B12 shots)
Interstitial Cystitis - 2002
Raynauds - 2005
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/28/2008 12:09 PM (GMT -7)   
Well... Not taking the medicine will probably make you feel even worse... :(... *And you need to be careful about just... not taking medicine... and not telling your doctor about it. Medicine can be dangerous especially if you just stop taking it on your own...*

If you're having lots of bad days... maybe you need some better medicine...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 5/28/2008 12:10 PM (GMT -7)   

I started another course of Entocort last week.  It didn't do anything for me last time (about 2 years ago) but we're trying it again.

I know it's not smart to just stop taking meds, I've never done it before, but I honestly don't think it's doing anything, that's why I'm frustrated.


Crohn's Colitis - officially diagnosed Feb. 2005
(Asacol, Imuran, Folic Acid, Iron, B12 shots)
Interstitial Cystitis - 2002
Raynauds - 2005
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/28/2008 12:17 PM (GMT -7)   
I understand the frustration... Because I'm feeling pretty bad myself, too... but I know if I were to stop taking my medicines, I would probably feel worse (not willing to risk more pain and suffering, so I'm putting up with all the side effects, too).

Pretty much playing the waiting game... :(... I know I need something different. And as I said... if you're having a lot of bad days, sounds like you probably need something different, too...

But you really ought to stay on your medicines until then...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/28/2008 12:19 PM (GMT -7)   
Meliskiss I once stopped taking my Asacol because I didn't think it was doing anything. I ended up getting very sick because of it. I went back on it and got back to feeling better. It is a very mild medication and I personally would prefer to stay on these lighter meds if all possible. And for me right now, its working just fine.

Celey has a very good point too that you should never stop taking a medication without your doctors approval. I would hate for you to get worse.

Also, another fact I want to share with you. I once enjoyed a 20 year remission without any medications. BIG MISTAKE!!! I ended up having my remission abrubtly ending with a emergency resection.

Really everyone with Crohns should be on some kind of medication at all times. We need to keep the inflammation at bay or we end up getting even sicker. And Meliskiss, would you rather be feeling well and taking alot of pills everyday or being sick everyday. I personally prefer to have more good days than bad. JMHO
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 5/28/2008 12:29 PM (GMT -7)   
I appreciate the responses.  I would never stop/modify/miss my Imuran.  And as I said, I'm currently on Entocort now too & I take all my other meds religiously.   I just wondered if anyone else didn't get much help from Asacol & had more success with something else (Colazal, Pentasa, etc).

Crohn's Colitis - officially diagnosed Feb. 2005
(Asacol, Imuran, Folic Acid, Iron, B12 shots)
Interstitial Cystitis - 2002
Raynauds - 2005
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 5/28/2008 12:39 PM (GMT -7)   

My GI feels that Pentasa (which I'm currently on) is so mild that it's practically useless.  If I ever get to the point where I'm asymptomatic, I'll discuss dropping it with my doctor.  (Don't worry, I'm on LOTS of other pills! tongue )  Until then, I won't go off it, even though he suggested it.


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 5/28/2008 1:01 PM (GMT -7)   
wanna quick burst of energy try monster energy drink,, comes in green can,, has an M on it...sry in advance if it doesnt work for u

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 5/28/2008 1:34 PM (GMT -7)   
Wow, energy drinks are a really bad idea.  Between the sugar and caffeine, it's a guaranteed dash to the bathroom.  Might as well just pour it straight into the toilet.

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/28/2008 1:44 PM (GMT -7)   
Umm.... Yeah. 'Sides, the quick burst of energy won't make up much for the inevitable crash that would happen afterwards...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 5/28/2008 1:51 PM (GMT -7)   
I don't really understand the relevance of the energy drink comment...

Crohn's Colitis - officially diagnosed Feb. 2005
(Asacol, Imuran, Folic Acid, Iron, B12 shots)
Interstitial Cystitis - 2002
Raynauds - 2005
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 5/28/2008 2:11 PM (GMT -7)   
did u try it ,,,i didnt take my meds either cos i didnt think they worked,,i figure the b vitamins in the drink wuld help,mabe add some taste when u took yur meds, i like the drink, its addictive but it works when u run out of things to drink,,,if u didnt try it,,dont say u just pour down toilet cos i dont see how that is relevant if u didnt try it

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 5/28/2008 2:37 PM (GMT -7)   
I have no idea what the energy drink comments have to do with anything either!!!!~ Mesalamine does not have good research behind it that it helps Crohn's, so if you don't think it is helping, you might be right. Go pull some articles and bring it to your GI. I am on Pentasa, and doing ok, so I do think it may help me, but you have to trust yourself and your own symptoms. I don't think you should go off of it without talking to the doc, but you have a right to talk about it and make your own educated decisions.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/28/2008 3:24 PM (GMT -7)   
I felt that way about the Asacol, after about a year of being on it. Didn't think it was doing anything. So I decided to stop taking it. Boy, big mistake, I went right in to a flare. So now I never skip it! Even though I've flared while on it, it is still doing something. Right now I'm hoping that it's working with the prednisone to get me in a remission again.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapered to 30 mg, Asacol, Questran, Toprol XL (for high blood pressure).


epeters
Regular Member


Date Joined Feb 2004
Total Posts : 28
   Posted 6/5/2008 12:09 AM (GMT -7)   
Meliskiss:

I was on Asacol for awhile and since the caplets are hard and I have an ostomy, they were going in one end and out the other; no absorption. My doc switched me to Pentasa which is a caplet with little granules inside that breaks open for better absorption. Although I did have to take about 24 of them every day. I didn't think either medication was doing much either. Listen to your doc. What's one more pill?

I was listening to a radio show once and the DJ asked when do you think your life is headed downhill? After 30, after 40? One of the responses was that your life was going downhill once you started taking more than 10 pills every day. At the time, I was taking 42 pills each day. I guess we all know better, huh?

sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 6/5/2008 5:58 AM (GMT -7)   
ha, for real.  since i've been on 15+ pills/day since I was 19. 

Crohn's Colitis - officially diagnosed Feb. 2005
(Asacol, Imuran, Folic Acid, Iron, B12 shots)
Interstitial Cystitis - 2002
Raynauds - 2005
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


jagwebb
New Member


Date Joined May 2008
Total Posts : 8
   Posted 6/5/2008 6:53 AM (GMT -7)   
My husband has been on Asacol - 12 pills a day - for almost 12 years!  His dr. recently told us that new research has shown that mesalamine is not effective for maintenace of Crohn's and that my husband's disease has been progressing this whole time.  Ironically, after my husband was first diagnosed and he was very sick at the time - he got better almost immediately after starting to take the Asacol and has been pretty much asymptomatic since then.  So we feel like the drug has been doing something all of these years. 
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