Mesalamine and Headaches: What Users Say

• Gea...
• July 19, 2018

For Ulcerative Colitis, Active "Been on this for two months now, absolutely no more. It's terrible. Makes my symptoms worse. I keep being told not to stop taking it, the effects will eventually stop, they don't. Abdominal pain, in areas I've never felt before, now not just my lower left side but all the way up under ribs. Terrible swelling, nausea, headaches, dizziness, fatigue, general sick feeling, constipation, bloating, pain every time I eat. I'm stopping this now. It's not helping, and even if it did, side effects outweigh the benefit. I was better before starting this rubbish."

• Luc...
• Taken for 2 to 5 years
• December 26, 2020

Mesalamine for Ulcerative Colitis "I started taking Lialda in April 2015, 4 tablets a day for my ulcerative colitis. After being sick for many months and in and out of the emergency room, I was ready for something that would help me get my life back. I was having diarrhea with blood multiple times a day, along with abdominal pain and cramps, and down to 106 pounds. Lialda started working almost instantly for me. Within a week, I was no longer having any loose stools, blood, and my pain level was down 80%. I had some side effects such as headaches, chills, fatigue, and dizziness; a small price to pay for how much Lialda helped me and saved my life. I was able to slowly decrease my dose to 2 tablets a day, then 1, and now none. I gained weight and started to feel more like myself again. For me personally, it was a great experience that was worth any side effects that eventually went away after my body was used to the medication. I would definitely recommend Lialda; maybe it can help you like it helped me."

• Bos...
• Taken for 6 months to 1 year
• August 9, 2015

Mesalamine for Ulcerative Colitis, Active "I take Lialda 3.6 g each morning, which cleared up my diarrhea and bloody stool, but I have had neurological side effects of headaches, fatigue, and slow thinking, and abdominal pain, gas, and bloating as well. I'm too scared to switch to other meds despite an Asacol prescription, given the risk of flare-ups when meds change, but I don't want the mental haziness for the rest of my life."

• Mic...
• Taken for 1 to 6 months
• March 18, 2019

For Ulcerative Colitis, Active "Prescribed mesalamine for ulcerative colitis in Jan this year. After two weeks, had severe tummy cramps, bloody diarrhea, headaches, fevers, nausea, and rashes. Was then put on Pentasa after a week, and symptoms got worse. Went back to the specialist and stopped it all 7 days ago and was put on a course of steroids until I go back for my 2nd scope in three weeks and 3rd in 10 months. Symptoms have subsided, but still experiencing severe tummy pains, extreme diarrhea (especially once the steroids wear off, I'm up all night constantly on the toilet 15+ times) and loss of appetite and nausea. I can't find any information on how long this takes to leave my system, and I regret ever starting this medication. It's made my life awful for the last 2 months. :("

• Ano...
• April 7, 2017

Mesalamine for Ulcerative Colitis, Active "I was diagnosed with moderate to severe universal colitis on 3/27. I was prescribed Lialda and take 4 pills a day as well as 1 Uceris. I am not exaggerating when I say the relief was almost instant! Within 3 days, I went from urgently using the bathroom 5 - 6 times a day with unbearable abdominal cramps to using the bathroom once a day with no cramps! The only side effects I have noticed so far are slight headaches, occasional trouble sleeping, and more frequent urination, which I will take over my colitis symptoms any day :) Lialda seriously has changed my life in the short 2 weeks I've been taking it ——————————————————— 19 years old Moderate to severe universal colitis Flare started: May 2016 Diagnosed: March 2017 Remission: April 2017"

• Bab...
• June 8, 2014

Mesalamine for Ulcerative Colitis, Active "I am on day 3 of Lialda. The first day I took all 4 pills with breakfast. Did the same on day 2. Day 2 I had severe diarrhea, chills, and headache. I felt like I had the flu. That night I did the Canasa suppository. Woke up several times in the night, but did not go to the bathroom. Day 3, I woke up with a severe headache and mild diarrhea. I decided that I would take 2 Lialdas with breakfast. I started feeling a little better. It is now night 3, and I just took 2 Lialdas with dinner. Headache is not as severe. I am hoping that by day 7 I feel normal again. I was diagnosed with Ulcerative Colitis in 2003. I have not had a flare since 2006 until recently."

• Vit...
• Taken for less than 1 month
• June 23, 2016

Mesalamine for Ulcerative Colitis "Age 37, diagnosed with bad UC at 12, recent years only flares up 2-3 times/year. Currently fighting the first bout of the year with Pentasa suppositories, taking 1-2/day. Has stopped the bleeding and going less frequently BUT awful headaches (as with Asacol/Salofalk foam enemas). Note to self/others who are sick of drugs: I have found (25 yrs in) that it IS possible to be symptom-free if you properly and consistently take care of yourself. This means plenty of rest/sleep, chamomile tea/water, gentle exercise, meditation (mindfulness is a cliché/buzzword but there's a lot to it), steamed veggies/rice, avoiding sugar/alcohol/dairy/caffeine (going gluten-free can help some people too)... I intend to cure myself completely one of these days!!"

• tes...
• Taken for 1 to 6 months
• February 16, 2020

Mesalamine for Ulcerative Colitis "I got UC 3 years after quitting smoking at age 70. As I was always healthy before, I was rather dismayed to be told I have ulcerative colitis. I take the enema and find it difficult to use as well as a nuisance. I do not 'go' as often and there is no more blood, but I am tired, have headaches, bloating, flatulence, and cramps---to the extent that I now get very little sleep. Before, my symptoms were in the morning. Now, I feel urgency to go all day---as well as most nights. Won't say I'm sorry I quit smoking. I'll just say I'm glad I smoked as long as I did. Hope others have better experiences with this drug."

• Mer...
• July 28, 2019

For Ulcerative Colitis, Active "45 yr female finally diagnosed with UC after months of misdiagnosis, told bout of gastroenteritis, put on cipro, flagyl, etc. White blood cell count of 24,000 before hospitalized and still misdiagnosed. Had to yes beg for colonoscopy to get correct Dx. Took 50 mg prednisone step down, ended 5 weeks ago, only on mesalamine now, 4 pills 1 x per day. No blood, but still loose/wet small stool 'baby snakes,' never a clean wipe, severe headaches all day, fatigue, flu symptoms, sore throat, eye inflammation, muscle pain, and unbearable teeth pain/pressure. Need blood labs to check kidney and a follow-up with GI. May drop to 3 pills, see if help with awful side effects especially the crushing headaches, the worst, as only can take Tylenol, does nothing. Not sure side effects worth it, hope reduced mg helps. PS taking turmeric & slippery elm at night, still never solid stool. Always carry wipes, but only going 1-2 x per day, so have to pick symptoms tolerate. Don't want to be put on biologics Humira or Stelara, willing to try lower dose first."

• Anonymous
• September 29, 2011

Mesalamine for Ulcerative Colitis, Active "I took Pentasa for ulcerative colitis after Asacol started failing. Asacol had worked for me for seven years, but when P&G started having manufacturers make it in Europe, it no longer worked. The Pentasa worked for my ulcerative colitis at a 3-gram per day dosage. The side effects are much worse for Pentasa. I experienced nausea, mild headaches, and severe hair loss."

• CKi...
• Taken for less than 1 month
• August 18, 2017

Mesalamine for Crohn's Disease "I started taking Apriso after being diagnosed with Crohn's in August 2017. My gastro doctor started me out on the ER capsules in the morning. I didn't really notice many side effects at first. I actually felt better than I've felt in years. Crohn's symptoms are almost completely gone, however, I still have a bad day every now and then. A few weeks in, I'm having horrible pounding headaches, dizzy when I stand from sitting, heartburn, excessive sweating, dry mouth, nausea, food tastes metallic, and loss of appetite. I'm afraid if I stop this medication, all the Crohn's issues will return. I would rate it a 5 because the med works if you can tolerate the side effects."

• red...
• December 26, 2009

Mesalamine for Crohn's Disease, Maintenance "My husband has only been taking Pentasa for a few days, but he has had terrible side effects since day one. His Crohn's had become progressively worse over the years, so his GI doctor prescribed Pentasa. He has chest pains, headaches, severe nausea and vomiting, as well as loss of appetite. I saw that one person had to lower his dose after 3 weeks, and I wonder if that was due to his experience of these effects also. I know Pentasa has great potential, but how long will these effects last?"

• bmr...
• October 10, 2011

Mesalamine for Ulcerative Colitis, Active "I've been on Lialda for about 3 weeks, and it's not working at all for me. I feel like I have the flu every day, and the severe headache is unreal. I am still bloated and still not going to the bathroom."

• Anonymous
• July 6, 2011

Mesalamine for Ulcerative Colitis, Active "I have been diagnosed with ulcerative colitis for nearly 3 years. I take 3 pills a day. Initially, I was prescribed 4 pills, but did have an increase in headaches. But, just dropping to 3 pills alleviated the headaches, and my proctitis is well managed. I have needed to do bouts of prednisone 2 times, but overall, Lialda has worked for me."

• Das...
• Taken for less than 1 month
• February 13, 2018

For Ulcerative Colitis, Active "I had my first flare and diagnosis of ulcerative colitis 3 years ago at 41 years of age. I was put on mesalamine, and it immediately worked great. Within days, the symptoms had receded, but in place of those, I am one of the few to get the dreaded headaches. I have never had a headache in my life until then. I tried to hang in there until finally having to throw in the towel. It was so bad I couldn’t sleep. At all. I went days without sleeping. I took the max amount of aspirin I could, but it didn’t matter. Once I started actually hallucinating, my wife said no more. I stopped taking it. The headaches stopped immediately, and fortunately, the flare was also ending at that point. Mesalamine really is a wonder drug if the side effects don’t overshadow the original problem for the individual."

• Anonymous
• November 21, 2008

Mesalamine for Ulcerative Colitis, Active "I've been on Asacol 12 pills/day (4 pills, 3x/day), and I've been experiencing headaches at least 2x/week. Also, I've had side effects of fatigue & acne. Whether or not these side effects can be completely blamed on the last 4-5 months of Asacol use, who really knows. But Asacol has helped control my symptoms almost completely."

• Anonymous
• December 13, 2010

Mesalamine for Ulcerative Colitis, Active "I was only able to take Lialda for one week and had severe headaches causing tenderness in the lower bottom of my head, blurred vision, and vomiting when the headache worsened. It worked, and I was feeling almost 90% back to normal, however, the headaches worsened, and I had to discontinue."

• Djt...
• Taken for less than 1 month
• March 27, 2020

For Ulcerative Colitis, Maintenance "I've been on mesalamine for a week for microscopic colitis. My bathroom runs have increased to 20 times a day. I can't sleep because when I lay down, it is bathroom time! I've been so exhausted, I have been sleeping an average of 12 hours a day, and I have a constant headache. Add on a bit of a fever, and my butt feels like someone blowtorched it. The meds are worse than the disease for me right now, so I am going to try steroids, though they are bank-breaking. If it actually helps, better than mesalamine, worth it."

• Rob...
• Taken for less than 1 month
• May 28, 2019

For Ulcerative Colitis, Maintenance "My GI specialist has recently put me on mesalamine, and a few years ago I tried sulfasalazine. Unfortunately, both gave me terrible migraines. My neurologist told me they both can cause headaches, but for me, it’s extreme pain from migraines. I can’t tolerate these meds and don’t know what other options there are without steroids or immune suppressant drugs."

• Ver...
• Taken for 1 to 2 years
• January 19, 2016

Mesalamine for Ulcerative Colitis "After taking Lialda for 2 years, my hair is very thin. It has not controlled me from going to the bathroom a lot. I started noticing, besides my hair getting thin, having severe headaches. Had to have a blood transfusion, and my urine started getting darker and darker. The straw that broke the camel's back was my tongue and lips swelled, and I had hives all over. They were so severe that I didn't get any sleep, they caused me to have blisters. After 3 trips to the ER, they finally found something to help the hives. I haven't eaten a full meal in over a year due to the fact that my mouth and lips were so sore and painful to eat. When all the side effects started piling up, I just quit taking it and called my gastroenterologist and will see him in 2 weeks."

• ang...
• January 19, 2013

Mesalamine for Ulcerative Colitis "I was diagnosed 6 months ago with colitis. I started taking Asacol 400 mg 3x a day. I felt great immediately after the 3rd pill. No diarrhea for 2 whole days! Last night, my stomach started that weird rumbling noise. About an hour later, I had a severe headache! One of the worst I have ever had! I was on my 10th pill. One of the side effects of this medication. Be careful, always call your doctor if you have any side effects with this medication. I stopped taking this medicine, it did not work for me."

• Ama...
• April 2, 2016

Mesalamine for Ulcerative Proctitis "I've been using Pentasa 2 times a day, a total of 4 pills. It definitely helps! Sometimes I get headaches and feel sick, and sometimes I occasionally get pain, and for some reason, ever since I started taking them, I get these weird skin patches."

• Anonymous
• February 27, 2009

Mesalamine for Ulcerative Colitis, Active "I have taken Lialda for 3 weeks and not much improvement. My doctor increased my intake to 3 pills every day and started me on prednisone. In my opinion, prednisone will do most of the work. I do not plan on taking Lialda long term because of side effects of headache, cramping, bloating, etc. This pill does not work fast enough."

• Pat...
• Taken for 2 to 5 years
• November 5, 2020

Mesalamine for Ulcerative Proctitis "I have been using Canasa for 2 years. First, I wasn't paying for it until I turned 65 years old last year. I now pay a $75 copayment. Three months ago, I tried the generic brand and I noticed lots of symptoms: heart palpitations, lots of bloating, really bad pains. My blood pressure elevated, nervousness, muscle pain in my left calf, pain in my left side, and a really bad headache. I can't deal with it anymore, I am even losing body mass."

• vnd...
• September 1, 2016

Mesalamine for Ulcerative Colitis "Works fairly well on the ulcers, but the side effects are terrible. Two days in, my knee swelled to twice the normal size, and I can't stand on it. Fever and headache constant. Ache all over. Eyes hurt. Going back to Colazol."