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Lialda Long Term Effectiveness

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Ulcerative Colitis
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Posted 10/21/2013 9:35 PM (GMT 0)
Hi All - I am a newbie here, this is my first post :-)

I have been on Lialda the full prescribing 4 pill dose for almost a year and it seem as though it has lost its effectiveness. I am in a full blown flare and am at a loss for which meds to try. My doc has recommended Uceris, but told me I would be his first patient on it. I don't want to be the office guinea pig to try this new drug. I was only on Pred once before and experienced every side effect. I've also been seeing a holistic doctor and trying herbal supplements as I'm trying to stay away from taking the hard prescription drugs which scare me. Oh..and did I mention that I've been wanting to get pregnant for the last year and keep putting it off hoping for a remission that never comes. I can't wait much longer, I'm not getting any younger, but not sure how I can possible go through pregnancy like this or on steriods?

Any insight from the UC community?

35 year old - Female - Diagnosed since the age of 12
Currently taking Lialda, Vitamin D, Iron, Pre-natal vitamins and probiotic
Posted 10/21/2013 9:58 PM (GMT 0)
Have you tried rectal meds?
Posted 10/21/2013 10:59 PM (GMT 0)
I can't help but think that your attempt at transitioning to herbal supplements is actually what is responsible for your flare and statement that Lialda doesn't seem to be working anymore. Could you please give us a list of all the herbal supplements you have already taken and are currently on? I've taken several myself but you may be mistaken if you believe that herbal supplements can't hurt you or make you flare. This could be your real problem. What probiotic are you taking? Just using the word "probiotic" doesn't mean much. There are umpteen million different ones, many of them actually useless against UC. Were you taking birth control pills at one time and recently quit during this time that your flare has gotten worse? That could possibly be the culprit as well.
Posted 10/22/2013 1:56 AM (GMT 0)
Thanks Sherbear 46. Yes, I've been on both Canasa and enimas in the past. The canasa used to be pretty effective for a few years, now its seems like it either isn't strong enough or not getting to the needed area. As for the enimas, I could never keep it in.
Posted 10/22/2013 2:03 AM (GMT 0)
Thanks for the thoughtful reply, Garylouisville. And, yes, I've been on the herbal supplements for a month and have just about finished the bottles. I have stopped about 3 days ago, because I had the same thought. Why am I getting worse? Other than eating some occasional bad food and glass of wine, but that has never aggravated things to this extent. I was taking Herbal ABX and GI Care (UC) both produced by Evergreen. I was given these by a new holistic doctor I've been seeing (like I said, I'm desperate as I don't want to have to resort back to steroids). The probiotic I'm taking is Klaire Labs Ther-Biotic Women's Formula Multi-species probiotic supplement (3 per day). He also gave me a mineral liquid substance because my iron was real low from my blood work, MO=Molybdenum. I've been off the birth control pills for a few months, so I don't think that is the issue. I'm hoping to get this thing back under control with just the Lialda. I tried a veg only diet for 2 days and that didn't help seems like it made things work. So, jeeze, I might as well just have a hot dog and chocolate shake:) Again, thanks every one for providing suggestions! It really helps to have a place where people understand what the heck I'm dealing with here.
Posted 10/22/2013 11:59 AM (GMT 0)
CBon,

Welcome to the forum.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.

And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:

1) adequate high intake of vitamin d3 ( need to get your levels checked first)

2) probiotics are key, for many of us VSL #3 works well

3) slippery elm powder to coate the intestinal tract helped greatly

4) l-glutamine amino acid powder for long term colonic repair

5) food combining

6) diet modification as in gluten and dairy free

7) rectal meds help lots of folks out

8) for females, hormonal shifts affect UC a great deal

The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission.

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

Posted 10/22/2013 12:03 PM (GMT 0)
I took lialda for about 3 1/2 years with only very minor incidents along the way. Then... it stopped working and after a few months I developed some kind of intollerance to meslamine and it was actually making things worse. So it isn't unheard of that the drugs can lose their effectiveness which I am told doesn't mean that they will not be effective sometime in the future.

So, I would consider the Uceris. It isn't a new medication (budesonide), just a new delivery system that has a coating on the pill that doesn't allow the medication to release until its in your colon, similar to lialda. The result is that far less of the steroid is absorbed systemically and many of the nasty side effects are avoided.

I tried it, but it didn't work for me. However, many others have found remission with it or at least significant improvement. Seems very low risk to me.
Posted 10/22/2013 12:17 PM (GMT 0)
I'd give the enemas another try. Maybe just use half a bottle at first and see how it goes. Also make sure to squeeze the extra air out of the bottle first. Many people also have better luck if they warm the bottle before using it (like run it under warm water).
Posted 10/22/2013 12:33 PM (GMT 0)
Have you tried any more long-term diet changes? It may take your body more than a couple of days to adjust to the elimination of foods that are causing issues. For me, totally eliminating all gluten, dairy and processed foods has worked well in conjunction with taking prednisone to get out of a really bad flare. I am sitting on a prescription for Lialda which I'm going to start taking in a few weeks and am tapering off prednisone (rest of my story in signature). Also trying to get this under control so we can try for our 2nd, I'm 34 with my first being 10 months. With this flare it's setting us back, and we are waiting of until I'm completely off prednisone for a few months...hang in there!
Posted 10/22/2013 12:49 PM (GMT 0)
I don't think it is correct to say Lialda lost its effectiveness. I think it is better to say that your uc disease has gotten worse (greater in extent or more severe). And as such, anti-inflammatory meds aren't enough for you anymore. Uc has a tendency to spread up the pipe, so to speak, and it gets worse over time, especially within the 1st 5 years of initial diagnosis.

Uceris has a lot less nasty side effects then pred. As Uceris is mostly topical in nature; only about 10% of Uceris is systematic. Uceris is an 8 week course, with no tapering, no half pills, none of the fuss of pred. However, it is new and available in brandname only, so check to see how much it would cost you for the prescription. Pred on the other hand is generic, and cheap.

Diet changes don't work for everyone, myself included.

Try enemas they might help. Steroid-based enemas are also available and are mostly topical in nature, jsut like the Uceris. Much cheaper too.
Posted 10/22/2013 12:51 PM (GMT 0)
I'm putting my money on the things your holistic doctor put you on. Seems too coincidental that you got worse after starting down this road. No offense, but I think most of these people are quacks. You can't argue with the fact that instead of him making you better, you got worse. If your GI did that to you, you would probably search for a new GI. Medical science often fails people like us so we get desperate and wind up in the hands of someone who wants to make a living just as much as our GI's do.
Posted 10/22/2013 12:54 PM (GMT 0)
Try the Uceris. It didn't work for me, but like everything else UC related it works for some and not for others.
And I was the first patient my GI tried Uceris with too, no big deal. If it keeps you off the pred, then that's a win. And you never know, pregnancy may put you in remission. My wife's first pregnancy completely cleared up her psoriasis and her chronic sinus issues. The second pregnancy aggravated everything though.
Posted 10/22/2013 12:56 PM (GMT 0)
I've been on Lialda (4 pills after breakfast) for 2 years. I've never fallen back into the horrible flare I was in before I started it, but I can say that medicine is only one part of the equation to get better. SCD diet is my lifestyle, and I started this near the same time I started Lialda. Don't feel obligated to reproduce, either. If you're unhealthy, it's silly to risk your life and the proper development of another human just to just to fulfill our DNA's regemin. Not to mention that once you have a child, your sleep patterns will get thrown completely out of whack. Sleep is a HUGE variable for my health with UC. I realize this is somewhat opinionated, but I'm not bringing another human into this world until I'm physically, mentally, and financially ready to provide him/her with close-to-ideal development platforms. Listen to this interview; it's hormone-based, but really applies to nearly everybody. Especially an aspiring mother. http://www.youtube.com/watch?v=xUo-e9vs9a0

All the luck towards your future.

-Alex
Posted 10/22/2013 1:55 PM (GMT 0)
if you are taking supplements prescribed by your h doc, just make sure you know what exactly you are taking and do some research on them if you haven't just to make sure they are compatible with treating uc symptoms - I believe that we should all try to be healthy as we deal with uc - just don't waste money on a lot of supplements needlessly -

and gary thinks all docs are quacks because they can't fix his uc, which is really just ibs imo -

Posted 10/22/2013 4:09 PM (GMT 0)
WOW! I had no idea that posting on this site would bring in so much support within the UC community. I wish I would have done this a long time ago! I went from feeling completely defeated to feeling like I have options again. And, to have opinions from those who know exactly how I feel is great. It's hard just having my husband to talk to as sometimes, he just doesn't get it.

To IsSoFla, that helps. I'm going to give alot of your recommendations a try! And, fruitgirl, I am also going to give the enemas one last try to see if makes a difference. Thanks, PlumsMom, I really do think long term diet changes will help alleviate some of my symptoms, as well. And, GaryLouisVille I do agree about the supplements, I do think they might have made this hellish super flare come about, so I have stopped and don't think I will go that route again. To BobPuvel, I really appreciate your opinion about pregnancy, but this would be my second child, my first is 3 years old and it didn't seem that the first time around I struggled very much and I so want her to have the joys of a brother or sister to complete our family.

Based on all your feedback, my plan is to try some of InSoFla's recommendations, watch my diet, give the enemas and canasa another shot, along with continuing my Lialda and keep my figures crossed that I will feel better in the next couple weeks. If all else fails, I will get that script for the Uceris and give it a shot.

Again,thank you all for your opinions, suggestions and overall support. I love this one community. I will keep you all posted:)
Posted 10/22/2013 4:28 PM (GMT 0)
I know you got alot of great answers, but I also put my vote in to try enemas (first Rowasa and if not than steroid based). If that doesn't do it, my next step would be to try Uceris.

Of course keeping a food log is a good idea since everyone has different things that bother them. Also to consider that something you are taking is aggravating the UC.

Good luck and let us know how it goes!
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