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lialda question?

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Ulcerative Colitis
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Posted 12/14/2010 5:07 AM (GMT 0)
Okay, so I know that one of the main side effects of Lialda are headaches. I have them. I'm currently on 4 a day. I dont usually get headaches, and I have been drinking gallons of water to make them go away (since i'm just really not a fan of taking even MORE meds) along with making sure I sleep a good amount each night. Especially during finals week, these headaches are not the most helpful. Anyways, I know that several people taking Lialda aren't taking that many pills. This is my first month of being on the drug, and I'm just confused as to why I have to take so much? I am aware that the medicine does not prevent or cure the disease, it merely 'treats the symptoms.' (Which has been great, dont get me wrong!) But considering my UC is on the mild side, I emailed my doc and asked her about the headaches and if it would ever be possible for me to take fewer pills per day. She told me to take the pills at night (to get rid of the headaches) and she said, "Four pills is the amount you need to be on.... until a new formulation of the medicine is developed (which will likely happen)." ..I have never heard of this 'new formulation' business, has anyone else? My next appointment isn't until like March, so it's 4 bad boys a day until then. Let me know what you think. I really appreciate any input here- I'm still in the learning process.

Thank you so much,

MNL
Posted 12/14/2010 5:15 AM (GMT 0)
Hm, 4 pills a day is the max dosage. My GI had me start out on 2, and after a while with only minor results, has just bumped me up to 4. I'm glad you brought up the headaches (though not glad you're suffering!) since I've been inexplicably getting headaches too, which is rare for me. Interesting to know they are related.

I personally consider just 4 weeks in on a new med to be still in the adjustment period so if it were me, I'd give it some more time. If they are still bothering you get back in touch with your GI, though taking them at night sounds like good advice.

One thing I thought of: do you take them with food? I know my bottle says to take them with food, so perhaps that could be having an effect?

Hope you get to feeling better!
Posted 12/14/2010 5:32 AM (GMT 0)
I don't understand why they start people out at such high dosage myself. Better off starting slow and see if you can do well on less pills, cheaper in the long run and lessen side effects. They probably get some kick back in sales from the drug company.
Posted 12/14/2010 8:02 AM (GMT 0)
There are other 5-ASAs you can try other than lialda.

I'm using natural anti-inflammatories instead of 5-ASAs. It's ginger tea and turmeric for me.
Posted 12/14/2010 2:46 PM (GMT 0)
I was on 4 a day for a LONG time. I did not have any side effects other than my stools were never as formed even when not flaring. Any oral ASA can make your have softer stools... Apriso is another one that you might ask your doctor about because it is said to reach a little lower in the colon. I would give yourself 6 weeks or so though to see if the headaches go away. You mentioned that you are taking finals and stress might be making your headaches even worse.
Posted 12/14/2010 4:41 PM (GMT 0)
I don't think that just because 4 is the maximum dosage means it's what you need to be on, especially since your UC is on the mild side. Can you perhaps consult with another GI? You could also consider adding in a rectal med if you drop your dose, just to help keep everything quiet. And it might be worth trying a different mesalamine-based drug. Apriso, which I'm on, has a much lower mesalamine content at it's maximum dose than Asacol or Lialda.
Posted 12/14/2010 6:24 PM (GMT 0)
Thank you for the responses.

I have always been taking them food (actually because I can't swallow pills w/out food, just some weird mental thing, i guess). Also, I've been taking them later like she suggested and woke up in the middle of the night with just an awful headache. Maybe it was because I haven't ran for the past couple days, and I normally do daily? I'm not sure. I'm positive that it's not finals, though, because I've been through them quite a few times head-ache free.

Anyways, I really would have liked to 'start off slow,' and I am definitely going to visit a new GI soon- but it probably wont be until next summer. (Since my current GI is at my college.) I might be stuck now, though, because I have heard that discontinuing medication/lowering doses after you've been on one for a while can induce a flair? I guess we will find out because I'm really not looking to be on 4 Lialdas forever with these headaches if I can help it!
I'm just so confused about this 'new formulation' my doctor spoke of, since Lialda, Asacol, etc. are all essentially the same drug? Well, maybe after I take a course about drug design next year I, myself, will have an answer to that.

Thanks again for the input; I'm glad it's not just me who thinks its a bad idea to start out so high!

MNL
Posted 12/14/2010 6:33 PM (GMT 0)

When I was first diagnosed with mild to moderate UC, my GI started me on 2 Lialda per day, and then bumped up to 4 when 2 didn't have the desired effect.  Per recent conversations with my dr, I anticipate staying at 4/day until I have been out of a flare for a year, and only then decreasing.  Based on my past experience, going off Lialda did not induce a flare, but certainly every time I decrease my prednisone dosage, I get more bleeding :-(

I thought the mesalamine enemas might obviate the need for oral mesalamine, but they didn't really work for me.

Posted 12/15/2010 2:09 AM (GMT 0)
I was taking 4 lialda/day for the past about 2 months although now I am going back to Colazal because of mucus and gas for the past 2 weeks.  Other than that I don't have anything bad to say personally about the Lialda.  I got less headaches with it than I did with Colazal and had more formed BMs.

Posted 12/16/2010 2:39 PM (GMT 0)
I have been prescribed 6 lialda a day for about a year now. My GI said he has some patients that take 8.

I started out at 4, but that didn't seem to control the flares like 6 does.

My biggest issue is that the Lialda itself seems to give me some digestive disturbance. But then again, it is just a balancing act, where the mild daily symtoms are tolerable and nothing compared to the acute symptoms that arise when I only take 4.

When I drop down to 4, I usually have a pleasant few days, but then they are always followed by a very difficult week.

Why am I so stupid to keep dropping the meds???

 

Posted 12/16/2010 2:52 PM (GMT 0)
Oh another thing... while it is supposed to be a 24 hour medication and taking all the pills once a day is the standard schedule, my GI believes it to be more effective if split and taken twice daily.

So I have experimented with this as well and probably agree that I have found it to work better when taken twice a day, although it then doubles the frequency of my side-effect digestive disturbance... so I tend to prefer the once a day, but eating 6 large pills at once sometimes just isn't the easiest thing to do!

Posted 12/16/2010 10:47 PM (GMT 0)
I take 4 a day and used to have really bad headaches but I solved that problem by taking the pills with a large glass of water and drinking water throughout the day. If I even start to feel a headache coming on, I drink more water and take tylenol as needed.
Posted 12/16/2010 11:21 PM (GMT 0)
Have you guys experienced hair loss from it? I haven't been on it long enough to know... but am starting to worry. Just wondering if more Lialda = more hair loss?

Thanks
Posted 12/17/2010 5:03 AM (GMT 0)
I've been taking the max dose of Lialda for over 2 years now, my hair isn't very healthy but that is because of the colitis and being malnourished, but no hair loss caused by the lialda. I do have headaches occasionally and just take Tylenol or hydrocodone, and drink lots of water :) I was taking a prenatal vitamin and 10,000 I.U. of Vitamin D, which seemed to help a ton with my hair and energy. But I quit taking them for the time being until this flare is gone. All in all I have never had a bad experience with the lialda and if my GI and I had our way I would only be taking lialda for UC. Hope this helps!
Posted 1/24/2011 4:17 AM (GMT 0)
Hi MNorthernlight,

This is pretty unbelievable, but I have been going through the same thing with the headaches from the Lialda.  Drinking water helps to get rid of them.  I was on 4 Lialda a day, but then my GI put me on 2 Lialda a day with Prednisone.  The headaches still occur with two pills, but the amount of water I need to drink has reduced by almost half.  There is definitely a correlation between the two.  I thought I was the only one that noticed the water thing because my GI looks at me like I'm crazy.  All the doctors said they don't know why water would help, but it is obviously to flush out the Lialda from my system. My ulcerative colitis has gone into remission thanks to the Prednisone, but I still have to deal with this frustrating headaches everyday. I too can tell when they are coming on and thats when I know I need more water. I am also 21 and in college as well.

Jeff K.

Posted 1/24/2011 8:34 AM (GMT 0)
My GI started me on 4 a day as well. She said my case wasn't the worst she had seen, but that it was serious enough to start off with the highest dose possible. I haven't had a full flare up since starting it in October. She has me taking 4 a day at night with dinner.
Posted 1/25/2011 7:56 PM (GMT 0)

I'm on 4 a day and have been for awhile.  My doc said I can try to lower my dose ... but I'm scared to.  I want to take less pills but I live in fear of setting off another flare.

'Course, now that I'm re-reading some of the side effects, maybe it's almost time to try going down to 3 pills. 

Posted 1/25/2011 10:54 PM (GMT 0)
I too am pretty scared to lower my dosage. Most people say that that was a bad decision for them, so I am very reluctant to do so. Although my mom keeps telling me to email my doc and ask if i can- I'm not so sure I will. The headaches are still there, some days good and some days bad. (i feel like they often make me tired, if that is possible?) I chug water like you read about, and then have to pee a bajillion times a day (and night). Oh well, I guess drinking a lot of water is good for you. Also, I usually run daily, and that seems to help too.

Thank you all for the advice and feedback.
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