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Lialda Headaches

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Ulcerative Colitis
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Posted 7/13/2014 6:46 PM (GMT 0)
Hey all!

Currently in bed with a crazy headache. Started 2 pills of Lialda a day on June 18. Several days later, I noticed that I was getting migranes. I was wondering if it was some type of sudden onset allergies. Started taking Claritin. No help. Then I decided it might be actual migraines. Started going to the chiropractor. No help. Tried drinking more water, getting more sleep. More chiropractor. More sleep. Less caffiene. No darn change.

Went to dr. Got a RX for Imitrex, filled it and never took it. Last week missed a day or two of Lialda. Noticed I was headache free on these days. Yesterday, missed my Lialda. Took it at night, no headache that day, but headache at night. Lialda this morning, and low and behold another headache. These headaches have progressed from being constant and annoying to being so awful I cant function. I cant even see straight, my vision is blurred. I cant get out of bed.

Im feeling super-frustrated. My UC symptoms are finally under control, but now Im naseous with a headache that wont quit. These headaches are even waking me up at night. Once the tylenol wears off, Im woken up with such severe pain that I cant sleep.

I noticed headaches when I first started, but thought maybe if I gave it a few weeks they'd subside. Then they got worse and I attributed them to something else.

Obviously I need to stop taking the Lialda and call my doctor ASAP tomorrow. Im so pissed off. Another day of my life wasted to UC. I know that's an awful attitude, but thats how I feel. I am glad I dont have colon cancer, but it's really annoying. I have so much to do today and Im laying in bed feeling nauseous and with my head pounding. UGGGGHHHHH!!!
Posted 7/14/2014 2:02 AM (GMT 0)
I got horrible headaches for the first month I was on lialda, but then one day they were gone. I blamed it on caffeine withdrawal but I mentioned it to my dr and he said it is a very common side effect and for some it goes away and for others, he switches them to another 5asa and they go away.
Make sure you call tomorrow!
Posted 7/14/2014 1:19 PM (GMT 0)
I never got any side effects from Lialda. I've been on it for a few years.
Posted 7/14/2014 2:12 PM (GMT 0)
That's interesting. I've been getting a fair amount of migraines over the last month (since I upped my Lialda to four pills a day). I never thought to make the connection, as I have chronic headaches and recently started Botox for them (which can take awhile to work). Maybe the Lialda is making things worse. All I know is that since I started taking it, my 15 months of horrible constipation ended and I now go multiple times a day (which IMO is better than a few times a week).
Posted 7/14/2014 2:33 PM (GMT 0)
Lialda gave me horrible headaches at first.
but I worry about your UC if you are missing pills!

Talk to your doctor about another mesalamine or balsalazide switch.
but for fear of UC flare please try to power through until you get a new script.

Your GI should be able to send in something new without having to see you so maybe you can figure something out over the phone and get a script in asap!
Posted 7/15/2014 3:20 AM (GMT 0)
@embersglow, I am still taking canasa and rowasa. Do you think I might incur a flare if I miss two days. My dr did not return my call today. I'm hoping he calls tomorrow. I switched to the Hopkins IBD program recently, and although I like my dr, it's hard to get a call back from their office unless I'm having an emergency and page on the on call GI. Please advise.

@Vitaka, I hope your migraines aren't related to the increase in Lialda, but I know mine are. It's frustrating because lialda really helped my UC. Let me know what happens, please.
Posted 7/15/2014 3:23 AM (GMT 0)
@michele, glad it never gave you any trouble! I appreciate your feedback.

@mom2twoboys, thanks for reminding me to call. I did and am waiting for a reply. I thought I could tough it out and I started the pills on June 18. The headaches are getting worse and I can't take care of my kids. It's frustrating. I spent Saturday vomiting all day and laying in bed. Ugh!! Thank you for your reply!
Posted 7/15/2014 5:18 AM (GMT 0)
I believe it's possible to overmedicate on 5-ASAs. They tend to be dehydrating, which can cause headaches. Are you in remission or near it? You might do better on Colazal (Balsalazide disodium) or Apriso and/or reducing use of Rowasa when taking oral med besides. It does seem that among oral 5-ASAs, Lialda use generates more reports of side effects on this forum than the other newer generation oral meds. Sorry that you have this problem with two tots needing your TLC ... / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
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