Stoping Lialda

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

RetiredGuy
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/23/2009 11:20 AM (GMT -7)   
My son was diagnosed with either mild UC or Crohn's (different doctors) almost three years ago.  He has been on Lialda for two years and has been in remission for almost two years.  His doctor feels it is safe to stop taking Lialda but I am hesitant because I read somewhere that if you stop treatment it could return and be worse than before.  Does anyone out there have experience with stoping treatment and either staying in remission or having the symptoms return?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/23/2009 11:26 AM (GMT -7)   
Oh yeah I do. I didn't want to take maintainence medication when I was young, so I quit taking it. While I was busy getting on with my life the Crohns was still in there doing its damage on a microscopic level until I fully obstructed and had to have emergency surgery. I will never be med free again. Lialda is such a safe med, I would keep your son on it, better safe than sorry in my mind. I have seen so many folks on this very forum go off meds and have their disease return and it also took forever to get back under control. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 12/23/2009 11:27 AM (GMT -7)   
Hmmm...my motto is, "If it ain't broke, don't fix it."
 
If your son is really in remission only on Lialda, then I believe he should keep taking it, unless it is causing side effects.
 
Because, yes, I have seen first-hand that when somebody comes off a med, then flares, then tries to go back on it, it might not be as effective as it was, before.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


Kittiecat
New Member


Date Joined Oct 2005
Total Posts : 18
   Posted 12/23/2009 12:13 PM (GMT -7)   
Your son should stay on the meds.  Maintenance is extremely important.  I attended a seminar given by the head of Gastroenterology at the Mayo Clinic and she said that staying on Lialda, Pentasa, Colazol, etc. decreases your chances of colon cancer by 50%.
 


JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 12/23/2009 1:38 PM (GMT -7)   
Stay on the meds.  When I was a teen, I wanted to be normal and I took myself off all meds.  Now, in my 30's my Crohn's has been flaring up.  I now react negatively to all medicines and I am currently on Remicade infusions.  My GI was hesitant on puting me on it since I have a mild case but I insisted.  If I had it to do over, I would stay on the drugs and not make the disease get worse.
 
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 12/23/2009 5:45 PM (GMT -7)   
I agree with the others. No meds = eventual trouble. JMHO.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


basil
Regular Member


Date Joined Oct 2008
Total Posts : 78
   Posted 12/23/2009 9:05 PM (GMT -7)   
I've been asking myself the same question, except that I take Colazal. I was in remission for about a year until I had an anitbiotic induced flare. Before the flare, I was reaching the point where I was seriously considering stopping my meds. I didn't realize that Crohn's can be causing damage on a microscopic level even without symptoms. What exactly does this mean? Is it causing damage that will eventually lead to symptoms and a flare?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/24/2009 7:41 AM (GMT -7)   
Yes Basil that is exactly what it means. I was young and didn't think someone my age needed to take meds. Well while I was busy getting on with my life, the Crohns was still doing its microscopic damage without me even knowing it. I didn't have any poop problems, could eat pretty much whatever I wanted, no cramps, nada. But my so called remission ended with an emergency resection due to a complete obstruction. So yes without the meds the disease will run wild, even without you knowing it. I am and will always be a big proponent of meds. Why do you think you were in remission, not because the Crohns in a miracle went away, but because of your meds. Crohns is a chronic and incurable bowel disease. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 3:05 PM (GMT -7)
There are a total of 2,734,288 posts in 301,200 threads.
View Active Threads


Who's Online
This forum has 151322 registered members. Please welcome our newest member, Jozuck12.
337 Guest(s), 12 Registered Member(s) are currently online.  Details
cupcakespinkgal, George_, JaSanne, Almost a 10, jdm99, pmm73, Dmc695, maria2016, dbwilco, peanut307, BostonMarigold, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer