Lialda for Ulcerative Colitis, Active User Reviews

• Qui...
• Taken for 5 to 10 years
• November 4, 2017

"I was diagnosed with moderate to severe ulcerative colitis in 2008. I’ve been on all kinds of medication including Asacol, 6MP, Remicade, Humira, prednisone, amitriptyline, Lialda, and others. I also had surgery to remove my gallbladder due to stones - which I regret now since I don’t think it made any difference with the BMs and bleeding. I finally had good results with Lialda. I used to take 4 pills a day but managed to wean down to 2. I also realized that part of the healing process came from spiritual healing and mental attitude. The stress from a job played a major role in my flare-ups. Prayer helped me spiritually which, in turn, helped me with my mind, which then helped with my gut alongside Lialda and a less stressful job."

• Cha...
• September 9, 2014

"My doctor switched me from Asacol HD to Lialda after I lost my insurance and needed a less expensive substitute. I was worried because I had grown accustomed to Asacol and did very well on that medicine. After a few days of adjusting to Lialda, with no real problems or side effects (just a little gas during the first 48 hours), I feel fantastic on Lialda. I've been on Lialda for about 5 months now and feel as good, if not better than I did on Asacol. I have fewer headaches than I did on Asacol and feel great with fewer stomach cramps. Best of all, for me or anyone who is on the go during the day, I now take one Lialda tablet, twice daily (once in the morning, once at night). This is compared to two Asacol tablets THREE times daily."

• mym...
• Taken for 1 to 6 months
• September 12, 2014

"Starting taking Lialda about a month and a half ago, and it took a couple of weeks to start working. As soon as it started working, I felt great - no more stomach pain, no more blood, no more diarrhea. Oh, finally something that helps take the pain away. I was shocked at how good it worked. But then I should have known it was too good to be true. About four weeks into it, my beautiful hair started falling out in clumps every time I washed it or even brushed it. I mean, it was a lot, every time I would cry. Also, the muscle aches were the worst. I would sit for maybe 10 minutes and go to get up and almost fall over because my legs almost gave out. Other than that, it works great for the pain, but I can't take the side effects, so I'm going to be switching medicines."

• hot...
• Taken for 1 to 6 months
• September 1, 2017

"Developed UC after I stopped smoking about 10 years ago. Have tried everything, including Lialda and Canasa. The only thing that works for me is smoking cigarettes. I've also tried nicotine gum and patch and even e-cigs. Only real cigarettes work. I have to smoke about 5 per day. Symptoms go away after 1-2 weeks. Then I stop smoking. Sometimes the symptoms will come back after a month, sometimes 6. Hate smoking, but what's the alternative?"

• Jen...
• Taken for 1 to 6 months
• October 14, 2013

"I take two Lialda pills every morning (1.2gm). Lialda helped my stomach pains and bleeding tremendously! I recommend it to everyone! It took a good 2 months to really show a big difference, but I am so happy I finally found something that helps. It has taken me years to finally find something. Also, contact your doctor or Lialda because it's really expensive, but you can get their coupon card and only pay $10 a month."

• no...
• Taken for 1 to 2 years
• November 19, 2015

"Glad to say, I am no longer taking this product that really never worked anyway. Have no symptoms for 5 years, everyone said I would be taking prescription medication for life. I just changed my eating and drinking habits, and you too can win the battle. Good luck."

• PCa...
• Taken for less than 1 month
• January 16, 2020

"In 2009, I developed pneumonitis, pericarditis, pancreatitis, and ARDS after 3 weeks on Lialda. My GI doc told me and the other docs on my case that I probably had swine flu and refused to consider Lialda as a possible culprit. The early-onset signs that you're reacting to this drug are that your colitis doesn't improve or gets worse. Having 0 experience (this was a first-line treatment upon my UC diagnosis), I trusted things would improve eventually, as the doctor told me to give it a month. But before that month was up, I was in ICU on full ventilation for 2 weeks and had a cup of bloody fluid drained off of my heart. A pulmonologist noted that my lungs looked like I’d 'inhaled pure lye' (which I hadn't). Another doctor on my case eventually intervened and gave me a megadose of steroids, which was the only thing that reversed my condition and imminent death. It was a very long, physically painful, and emotionally devastating recovery, something I never should have had to experience."

• kbb...
• March 22, 2016

"This drug almost killed me. I started during a flare-up in my 2nd trimester. My hair would fall out and kept reporting unexplained protein in my urine at every doc appointment. I lost 15 lbs during pregnancy and was determined high risk. 6 months post-term, I started to get severe chills to fever, couldn't eat, had full colitis symptoms. I was hospitalized with cardiac distress, severe anemia, and dehydration and stage 4 kidney failure caused by Lialda. Mayo Clinic detected that the protein in my urine was, in fact, a side effect from the Lialda. I was immediately taken off, and my creatinine and iron levels began to stabilize, and my hair stopped falling out."

• Nat...
• Taken for less than 1 month
• January 17, 2017

"I was prescribed this med for mild UC. I discussed concerns with my doctor on starting a medication while nursing and without trying a natural approach to curing the symptoms first. He shared some patients had success using turmeric supplements to address inflammation of the sigmoid colon (lower intestine and bowel). After 2 weeks on the turmeric, my symptoms of urgency, cramping, and excessive frequency to 'go' subsided. After 3 weeks, I've been having normal bowel movements and no cramping. I am happy with the progress I've made on this natural remedy."

• Kee...
• Taken for 1 to 6 months
• March 20, 2015

"I have fairly severe ulcerative colitis, and after 4 months of feeling horrible, tired, bloody diarrhea with the constant urge to go and fear of eating and setting it off again, I was finally diagnosed and put on Lialda - 4 pills once a day. At first, it caused horrible gas and bloating and took about a week or so to help the symptoms at all, but after a few weeks, the symptoms were completely gone and the side effects went away as my body got used to the medication. Then, about 1 month into taking it, I developed horrible cystic acne all over my face, neck, chest, even in my nostrils and ears! My doctor cut the dose in half to 2 pills once a day and within a few days, my skin started to clear and heal. I have been on the lower dose for about a month with no problems!!"

• ddi...
• February 6, 2011

"I had been in remission for 20 years and then had a flare-up like never before. I refuse to take any steroid-based medicines due to the side effects and advised my doctor of that. He started me on 4 pills of Lialda a day, and within 1 week, all of my symptoms were gone. I am now taking 2 pills a day and remain symptom-free with absolutely no side effects."

• sic...
• Taken for 1 to 2 years
• September 8, 2017

"I was on Asacol for 10 years with no flare-ups and leading a normal life. Then, 2 years ago, my insurance (BCBS) stopped covering it. My doctor changed me to Lialda, and I have had nothing short of a continuous colitis hell flare-up for 2 years straight: 20 diarrheas a day. Stomach cramps, weight loss, explosive uncontrolled BM. My doctor refused to write a letter of medical necessity to my insurance company so I could get back on Asacol. So I was on continuous steroids, which caused diabetes. Finally, to the point of starting Humira, which caused E. coli, C. diff, norovirus. Recent hospitalization, during which I was able to get back on Asacol while in the hospital. Now discharged and unable to get Asacol approved for use outside of hospitalization."

• Anonymous
• September 17, 2011

"What a remarkable medicine. I had battled with ulcerative colitis for quite a few years before I decided to finally go to a G.I. doctor. I am so glad I did because after my diagnosis I began Lialda, and it has been heaven-sent. I can now live a normal life, not 'fearful' of foods and how they may affect me later. I had quite a few other symptoms (cramping, moderate bleeding, etc.), and sure enough, they have all been relieved. I take 2 tablets twice a day and have had no side effects :) Or at least not any that I have noticed. I am relieved to know that my future looks brighter, because being in my younger 20s and dealing with this health issue wasn't exactly the most pleasant thing."

• In...
• July 12, 2013

"I have ulcerative colitis and have been on Lialda for a few years, 4 pills per day. I am in remission. My biggest problem is urgency, and if I can conquer this problem, I would be so much better. I have no pain. I eat most foods but stay away from gassy foods such as beans. I found that when I eat popcorn, I have problems."

• sir...
• October 18, 2011

"I've been using Lialda on and off for about 2 years now. Used it daily when first prescribed until all ulcerative colitis symptoms went away. I mainly use it during flare-ups. My colitis began severely flaring up this past week, and since I started taking Lialda again, I notice reduction/elimination of blood in stool, less bowel movements, and more solid movements. I believe Lialda is extremely helpful, especially if taken as maintenance medication to prevent flare-ups... which is what I should start to do."

• Ano...
• June 25, 2015

"I was diagnosed with left-sided UC in May of 2015. My GI prescribed 4.8 grams (4 pills in the a.m.) of Lialda, plus 1 Canasa suppository (1 gram) at night. The suppository was for 3 weeks only. Within 2 weeks, the bleeding stopped, and I no longer saw the remnants of the colon tissue erosions when I had a bowel movement. I stopped taking the Canasa after a week and a half because I think it was leading me towards diarrhea, and I felt slight rectal pain. There was no noticeable negative effect to me stopping the Canasa dose at that point. I continued to take the regular dosage of Lialda. I had some dizziness the first week or two, but that has since abated. I also noticed acne that I haven't had in many years. No issues with hair thinning."

• gtr...
• October 27, 2011

"My doctor switched me from Asacol (which was working very well) to Lialda, and the results were horrible. When I started having bad flare-ups, my gastroenterologist had no clue what to do. She put me on Remicade for over 16 months with no results, and I was miserable. When I suggested that perhaps it was the Lialda that was causing the problems, she stated that that was 'not likely.' Well, after about two years of misery and being back on steroids, I switched doctors - a guy who came highly recommended. After a heart-to-heart consultation with him, he stated he had some patients who did not do well with Lialda and decided to take me off that medication immediately. Within three weeks, I was off steroids, back to using Asacol, and life is now okay."

• Bea...
• April 24, 2014

"I was diagnosed with ulcerative colitis 8 years ago and, due to my financial situation, stopped taking any meds for the past 5 years. But recently, I went back to my GI, and after being reprimanded for my actions, I was put back on Lialda. It has been about 2 and a half months, and most of my symptoms have improved, though I am still having soreness/dull ache in my abdomen and urgency for the bathroom more than my GI thinks I should. A colonoscopy is scheduled in a few weeks to see what the condition of the colon is in, and I may have to add another medication. I would advise, even if you are feeling fine, do not stop taking your meds unless directed by your doctor. I have been told I will need to take meds for the rest of my life."

• Tum...
• Taken for 1 to 6 months
• June 25, 2014

"I was told to switch to Lialda after being on Asacol HD for 3 years, 2 pills 3x a day, 800mg each, due to my insurance not covering it anymore. My doctor told me the only difference was the coating, so I felt confident making the switch. By the end of week one of Lialda, 1200mg, 2 pills 2x a day, I was starting to get pain and go more frequently until it turned into diarrhea. I had no flare-ups for a year and had been feeling great on the Asacol, so I immediately switched back to it after a month on Lialda. It was too late, the wheels had already started turning on the road to a flare-up. I am now on day 8 of being back on Asacol, waiting for my prednisone to get me better. I am so disappointed this happened."

• Anonymous
• June 1, 2014

"Lialda is not for everyone. Talk to your doctor about other options because they're out there! I was prescribed to take Lialda 3 times daily. A couple of hours after my third dose, I developed the following reaction: fever, nausea, vomiting, chills, rash/hives on my throat and neck. My doctor wanted me to continue taking Lialda but lessen the dose. I did as told and was bedridden from the side effects. I then found a GI doctor and was prescribed Asacol and medicated enemas. No reactions yet! I wonder why Lialda made me sick, but I am fine with Asacol?"

• Jay...
• March 11, 2016

"I have been on this medication for the last three weeks and have not noticed any improvement. My symptoms the last 6 days have been at their worst (going to the bathroom almost every 2 hours). My doctor told me to keep taking the medication and is putting me on UCERIS. Just took that pill yesterday. Hopefully that pill works because this disease sucks, right? I am so afraid to go out anywhere because I am waiting on when I will have to go to the bathroom. I'll keep an update if UCERIS is effective."

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

"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."

• Anonymous
• Taken for 1 to 6 months
• October 27, 2016

"This medicine has little to no effect on my ulcerative colitis. I was diagnosed with it in early August of this year, I was prescribed Lialda because my case wasn't 'too severe.' I have seen no improvement from this medicine, and I would say my symptoms/flare-ups have become worse and more frequent. Apparently, this medicine works for some people, not me. I haven't noticed any of the side effects from Lialda, but it definitely isn't doing what it is supposed to."

• GAG...
• December 1, 2012

"I have been taking Lialda for 9 months now for my microscopic colitis, and it is working! I take 3 pills a day with zero side effects. I only have flare-ups if I eat something on my no-no list. My doctor told me I could come off the medication if I want to, as it is the type that will cause remission, but I am too afraid to go back to the pain of my colitis, so I decided to remain taking it. The only problem with this medication is that it is very expensive."

• Ile...
• Taken for less than 1 month
• March 31, 2018

"I have been on this drug for twenty days. I took myself off it because I've experienced severe joint and muscle pain. I also have rashes all over, including my head. I have lost 11 pounds, which would be nice except it is not fat, it is muscle mass. This drug needs more study! I sincerely hope no one else has to suffer as I have. I have been off it for 9 days now, and things have not improved. I hope this is not something I have to live with, but it appears it might be."