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Lialda long term effects? I am 30yo

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Ulcerative Colitis
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Posted 2/14/2014 3:26 AM (GMT 0)
Hey everyone, I just joined this site. I just started taking Lialda, 3 pills a day. This stuff works well for me. I had UC for like 10 years. I took prednisone the first time I was diagnosed, the side effects caused premature hair loss then for another flair I had it made me have legal trouble.

So getting in a prednisone haze got me into a fight, ruining my career as a doctor. I cant really handle my temper when I take it. Its no fun :(

My colitis is not as bad as alot of you. I rarely have blood, and apparently my rectum is not involved so I dont get pain. I just feel general discomfort and can have alot of urgency during a flair up. During this time, my energy level is low and my bowel movements are loose. Its ok if i can stay at home, but its not easy to work in an office/lab when I am feeling like that.

So, then I kept on with taking Asacol when I needed it, even though it never really controlled my flairs or even helped me much. I got along for a few years, I had Lialda sometimes and it helped alot but my insurance lapsed then I could not control my flairs. I would just take prednisone as needed, probably once a year for like 10 years, for 2-3 weeks at a time.

Now I am back on my feet, I own a hotel, medical career is finished but its ok, I am very fortunate so thats good. Now I am taking 3 pills of Lialda daily. I prefer to take 2, because it makes me urinate alot. I hope to get down to 2 or 1 soon, but right now my bowel feels much better with 3. Like, i feel great on 3 Lialda. I can do all the things I like, like running daily and working alot. But I am worried about what this will do to my body long term.

Also, I would like for my bowel to heal completely, so I could maybe stop lialda. Do you think this is possible?
Posted 2/14/2014 3:59 AM (GMT 0)
Most UCers are on at least a maintenance dose of their meds forever.
Usually 2 for Lialda. There aren't a lot of long term side effects with Mesalamine. Def not like prednisone.

Lialda is safe to take long term.
Posted 2/14/2014 6:23 AM (GMT 0)
i guess we'll see. i hope you feel better
Posted 2/14/2014 1:12 PM (GMT 0)
I have been on Lialda for almost 5 years. Its been a godsend to me. I take 2 when I am in remission which is the maintenance dose and 4 when in a flair along with rectal meds. I will never stop taking them as long as they are working for me. Flaring is no fun and I don't want to have one start up just because I thought I could go off my meds.
Posted 2/14/2014 1:14 PM (GMT 0)
Chelsea: Sounds like you just want to hear from people who agree with your treatment plan and not really take any advice. To be honest, being a doctor, you should know better. UC is an autoimmune disease. It is not a disease where once your colon is healed you are cured. Taking the Lialda may heal your colon but UC is a lifelong chronic disease and it will always be with you - always - even when your colon is healed. The moment you let up on treatment, your disease will be back, probably stronger than before. Lialda is safe for most people to take long term and with your prednisone history, stopping Lialda would be very foolish. Future flares often get harder and harder to treat and often what worked before to put you into remission won't work again or work as well, requiring you to take harsher and harsher med options. So, it is far better to take Lialda forever than it is to have another flare because you quit and then you could be looking at immunemodulars or biologics instead of Lialda.
Posted 2/15/2014 11:22 PM (GMT 0)
I would like to get off of the drugs, I understand that I have inflammation. My only issue is with the chonicity of the disease, since I remember the first time I had a bowel problem and the cause (i had a bad steak). Since then, my bowel problems have been waxing and waning. I dont have any other signs of Ulcerative Colitis, like the autoimmune sequelae. So basically, i think I have colitis, its chronic, but I think the source is some bacteria in my gut. Once I have this under control for a while, I will try weaning myself off.

I understand what you are saying. I dont want to take prednisone again, but taking any drug long term will have side effects. I am sure that this stuff is not good for your kidneys, no matter what anyone says. I wrote published medical papers before, i know how it all works, and the numbers game. Also, as a business person I know how the world works.

Anyway i will take this med daily for at least a few more months and see how i feel as i taper down. I really hate the idea of having to take any medicine for the rest of my life, for any reason.
Posted 2/16/2014 1:42 PM (GMT 0)
The #1 cause of uc flareups is noncompliance with medicine treatment plans. When you eventually flareup, you will be back on pred, again. There will be no gaurantee that lialda will work during your flareup, so you'll likely have to take a harder core medication (i.e., immunosuppressive meds). There are multiple posts in here ever week about somebody who stopped his/her meds, flared up, regretted it, and some require harder meds because of it.

Right now you are taking Lialda a topical, anti-inflammatory medicine. As it is topical, about 90% of the medication is flushed out if your body when you poop. So about 10% hits your liver/kidneys. Meslamine(active ingredient in your lialda) can change the color of your pee so the remainder does come out that avenue. Topical anti-inflammatory meds are pretty darn safe, nothing to be scared of or to worry about.

Hey, if you can stay on the lialda forever then consider yourself lucky. As many of us need really strong medications (myself included). If you are fool-heartedly ready to stop your meds then perhaps you can ask me then about the leukemia risks of the hardcore drugs tongue
Posted 2/16/2014 6:45 PM (GMT 0)
You were a doctor?

Sorry, stuff just isn't adding up here.
Posted 2/16/2014 7:17 PM (GMT 0)
ya, the math didn't work for me on this one either fgirl !
Posted 2/16/2014 7:29 PM (GMT 0)
I have to sign on to this opinion as well.
Posted 2/16/2014 10:28 PM (GMT 0)
Maybe he/she plays a dr on tv?
Posted 2/16/2014 11:12 PM (GMT 0)
i never did my residency. i did really bad on step 1 so then i just gave up during residency appications for the field i wanted, but instead of moving abroad like i wanted to, my parents then basically helped me into business. i'm not really here to talk about that, just that i know how things work with getting published, manipulating stats/results, and things work in general.

like, when i saw my labs, my BUN was like 24. For someone who is always under 20, that is a big jump. It was in the normal range, but i can assure you taking this for a few years will damage kidneys. 3.2 grams of any chemical is alot the last thing i want to do is screw up my GFR for the rest of my life.

but you can rely on the study's that state otherwise.

i wont submit to a disease. but i will manage it from now
Posted 2/16/2014 11:28 PM (GMT 0)
But you would rather have under treated inflammation that could in turn into colon cancer. We are already at a higher risk for it.
Posted 2/16/2014 11:57 PM (GMT 0)
anyway, i see you guys are pretty much celebrating being sick. patients get like that. Nasty overweight middle class woman who blames everyone for her problems? Fibromyalgia! Anyway, I wanted to join this community because I like english football, and darren fletcher has crohns and I was surprised he came back after surgery. so i thought it would be cool to be supportive and part of the community too...BUT

...I will let you guys celebrate your illness and moan about what to eat, what type of enema to use, and what type of over the top immunosuppressives to use. Obviously I am not welcome here, i'll just keep on doing what i am doing and I will let my Syrian doctor manage my GI. I am sure obsessing on eMedicine and (hopefully) Pubmed will teach you all that you need to know. I have other stuff to do.

goodluck everyone, i dont really have anything nice to say here anymore so bye.
Posted 2/17/2014 1:51 AM (GMT 0)
Wow the bedside manner you would have had is awesome...not.
Posted 2/17/2014 2:36 AM (GMT 0)
My husband has had UC for almost 20 years now.  What a painful, life changing roller coaster it has been.  Had a major flare about 6 years ago.  He had one of the worst flares of his life and his regular GI was out of town.  A newer physician put him on an old drug he had taken prior, and it did absolutely nothing. 

He suffered for three weeks as I called the medical practice to tell them how bad he was numerous times.  They kept saying that it takes time for the meds to work and his Dr. would be back soon.

Without even having my husband come in to be assessed, he had him do a colon cleanse.  He could not even walk out of the practice after the procedure.  He was gray and down to 123 pounds.  The doctor knew they messed up, he was visably shook up himself.  He told me the sunken temples and gray skin is "wasting" much like concentration camp victims.  I was so mad.  They put him on steriods immediatly, but sent us home and told us to go to Cleveland Clinic ASAP.  Really, again, my husband should have been admitted to the hospital to be rehydrated.  Learned a major lesson on that one!

In any case, Cleveland Clinic put him on Lialda tabs 3  per day.  He has been taking them for 6 years and feels much better.  Runs marathons, and is very active etc...  He did make a mistake not too long ago and tried to back off Lialda to see if he was in remission.  Right back on 3 a day, probiotics, and 1 oregano tablet per day.  (which I keep telling him is not meant for long term use).

Someone mentioned Lialda being topical; however, he takes tablets.  Is there a topical version???

We are going to try Blue-Emu (Bio-Curcumin, grape seed extract etc.) tablets for inflammation, and also I have read a lot on the Paleo Diet over the past 6 weeks and it says it helps many auto-immune disorders because it causes less inflammation in the body.  It's worth a try! 

In any case, if Chelsea ever visits the site again, you may want to add Eastern philosophies with Western meds, but unfortunately, as we have learned, there is no cure for immune disorders.  Your body has decided it is no longer in love with your colon unfortunately, it's not just cheating on you, you body wants a divorce!!!!!  Believe me, I have researched a ton over 20 years and have never heard of anyone going into complete, long lasting remission without meds. 

T

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