Lialda and Hair Loss: What Users Say

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

For Ulcerative Colitis, Active "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."

• kbb...
• March 22, 2016

For Ulcerative Colitis, Active "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."

• Hap...
• Taken for 2 to 5 years
• March 15, 2018

For Ulcerative Colitis "Initially, when I started taking Lialda, it worked. However, I ignored the side effects because the medication was working well. I pushed aside all the warning signs in my body until my symptoms became severe. I had loss of hair, muscle weakness, fatigue, anxiety, and the final straw was the rash that overcame my body. The doctor did not believe it was due to the Lialda because I was on it for 4 years, however, I know my body better than the doctor and chose to stop taking it. After 2 weeks, I felt like a new person. I am now on Balsalazide Disodium, and for now, it seems to be working fine. Listen to your body despite what the doctor says. Ignoring the warning signs my body was experiencing was ignorance on my part and will never happen again."

• Blo...
• Taken for 2 to 5 years
• June 25, 2015

For Ulcerative Colitis, Active "I loved this medication when I was first diagnosed because I was feeling better immediately, and everything cleared up 2 weeks in. I have been on this medication for almost 2 years now, and I have gained 30 lbs, and when I am on the highest dose of medication, I get painful acne! I never had acne as a teen. I also feel bloated all the time and think Lialda makes me retain water. I forgot to take my pills once, and the UC flare came roaring back within a day or two. My hair is also thinner. Did not fall out, just thinned. Don't enjoy the symptoms, but I do appreciate that it does work!"

• Ofl...
• March 25, 2016

For Ulcerative Colitis, Active "I have been on Lialda for almost a month and take 1200 mg twice a day. Has helped, but my hair is falling out, and I hope it stops soon. I also can't sleep. I am awake until 3 AM and then will doze for about 45 minutes. I like the medication, but not sleeping is a real pain."

• Urs...
• November 4, 2017

For Crohn's Disease "Diagnosed with Crohn’s after routine colonoscopy 5/2017 and was started on Lialda. No symptoms of Crohn’s other than the discovery of ulcers during colonoscopy. Now having hair loss at temples and fear it will continue and/or get worse. Plus it’s not covered by my insurance and costs over $230.00 a month. My GI says if I don’t take it, I risk getting colon cancer. I was basically told it’s better to be broke and bald than to have colon cancer. I think there has to be another answer?"

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

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."

• Mar...
• February 1, 2016

For Ulcerative Colitis, Active "I had tons of hair loss, and the medication never did anything for me. My doctor finally agreed to take me off it after 9 months."

• Bel...
• Taken for 6 months to 1 year
• October 4, 2019

For Ulcerative Colitis, Active "Taking Lialda, 2 pills twice a day, lots of bloating, diarrhea, losing hair... time to call Dr. Been on this med for almost a year... now that he upped it, feel it got worse."