HealingWell
Search Close Search
☰

Another "victim" of Lialda! Looking for general info and other's experiences

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/24/2017 3:48 PM (GMT 0)
Well,

Back around the first of the month I was hospitalized for a week and while there they didn't give me Lialda. I also started some heavy steriods and Remicade.

The last couple of weeks have been like I never had UC. Amazing.

Well, my doc asked me to start Lialda again and within 24 hours I was back to 10-15 urgent trips to the bathroom daily with watery D. Then the blood showed back up after taking a second dose.

I'm stopping the Lialda and have spoken to my doctors office who agree.

I'm wondering if from everyone else's experience if they will try another oral version of mesalamine and if so what you think it may be. I have an appointment on the books for tomorrow afternoon so that worked out nicely. Just looking for things to think about and possibly ask tomorrow when I have face time with the GI.

Currently on 30mg of predinose daily and am in a taper that will get me to 0 by the 3rd week of August.

Have had my 2nd loading dose of Remicade.

Dx - Pancolitis confirmed with two scopes and a CT scan.
Also have celiac which is very well controlled with diet for many years.

Thanks for anyone's thoughts.
Posted 7/24/2017 3:59 PM (GMT 0)
If you can't use mesalamine....don't keep using it.
I've used it for over 28 years....no problems.

It is what it is....

q
Posted 7/24/2017 5:12 PM (GMT 0)
The choice to use another mesalamine is a belief that the chemical in the coating, a buffer ingredient, or the point of release, is responsible for your reaction.

Tolerating mesalamine is a great advantage. But if you don't you don't. IF you think it was something in the Lialda other than the mesalamine, you could try another because it really is advantageous.

I speculate the odds of another mesalamine pill giving no bad reaction are low - but possible.

DO you think this reaction came on over time? Did Lialda help initially?

I am not sure what to make about the phrase "victim of Lialda" - it seems off. Any suffering came form failing to notice the side effect initially, or failing to notice the acquisition of the side effect. It is not really the pill's fault that you experienced a side effect stated in the brochure.

good luck with whatever comes next
Posted 7/24/2017 5:32 PM (GMT 0)
Sounds like you had a mesalamine-intolerance to me, whether it was lialda, asacol, delzicol or any number of medications would not have mattered. about 5% of patients who take mesalamine-based meds do have to discontinue them due to reactions, sorry you experienced once.

I'd talk with your doctor, but most likely I'd avoid all mesalamines as they'd all cause the same, exact reaction.

I hope the remicade works well for you!
Posted 7/24/2017 6:24 PM (GMT 0)
All of my doctors kept pushing Lialda no matter how I was doing. I can't say whether or not it helped at all but it did nothing to stop the bleeding, yet they kept insisting I stay on it, and stacked more drugs on top of it. It's frustrating because they'd ask "well, did you skip any days?" and of course there'd be a day or two where I ran out or forgot, so they'd say "welp try again, see you in a month". I think if a drug takes weeks just to stop me from bleeding, it's not the right drug, so I stopped it.
Posted 7/24/2017 6:42 PM (GMT 0)
iPoop - Sounds like you had a mesalamine-intolerance to me, whether it was lialda, asacol, delzicol or any number of medications would not have mattered.

Thanks iPoop. I wasn't sure if people could tolerate other formulations if having a reaction to one. Sounds like this will not be an option for me.


Alice 22 - Can you just stay on the remicade since you're feeling so much better on it?
That is my plan!

DBwithUC - I speculate the odds of another mesalamine pill giving no bad reaction are low - but possible. DO you think this reaction came on over time? Did Lialda help initially? I am not sure what to make about the phrase "victim of Lialda" - it seems off. Any suffering came form failing to notice the side effect initially, or failing to notice the acquisition of the side effect.

DB, thanks again for confirmation formulation differences probably won't help me. No, never did notice any benefit from lialda. "Victim of" was tongue in cheek. Just that I was the lucky one where Lialda seems to make my symptoms worse rather than better.


Thanks to everyone for their take on this. As a newbie to UC it is certainly appreciated.
Posted 7/25/2017 12:42 AM (GMT 0)
Just to note---I can take 2 Lialda no problem, but if I take 3 or more, it causes worse symptoms. Seems 2 oral is my maximum.
B
✚ New Topic ✚ Reply