Mercaptopurine for Crohn's Disease, Maintenance User Reviews

• Chr...
• Taken for 1 to 6 months
• July 21, 2019

"My son was on mercaptopurine at age 14 and had a reaction so severe he ended up in the hospital for 8 days. A blood vessel behind his eye broke, so his vision was impaired. He had heart palpitations and trouble breathing. His platelets were dangerously low. He had to have 3 blood transfusions. We almost lost him. I know people who have been on this med for years with no problems. I am just sharing this to let others know to be extremely careful, and if something doesn't seem right, contact your doctor immediately! There are no stupid questions, seriously. Always better to be safe than sorry."

• vld...
• February 6, 2013

"I have been on this medication for maintenance for at least 20 years. I have not had a bleeding episode since I started. Also, I have experienced no side effects. I don't know how others would tolerate it, but for me it really has worked. I have had Crohn's disease for over 40 years."

• tin...
• August 6, 2017

"This drug is a nightmare!!! Total fatigue with breathlessness, arm weakness and numbness, nausea, light-headedness. Now have developed tinnitus, which is a constant pulsation through ears and head. My white blood cells have dropped dangerously low, and my red blood cells are really poor. I am naturally now off the drug but don't know how long till I get back to health. ONLY GO ON THIS DRUG AS A LAST RESORT>"

• Kie...
• Taken for 5 to 10 years
• July 3, 2013

"I have been on this medication for 5 years since a bowel resection and have not had any pain nor side effects. The doctor monitors my blood counts every 3 months for low platelets, but all has been good. I"

• Jo2...
• February 17, 2017

"This medicine will make you feel like you've been hit by a car every day, exhausted, plus your liver and pancreas take a massive hit. I had constant pain and all my Crohn's complaints returned. I was fine on prednisone and Entocort, but my doctor wanted to make it even better. Please pay EXTREME CAUTION using this medicine before ending up in the hospital. I'm not saying this medicine is bad, but for one person, it seems extremely well or extremely bad, in my case, the worst time I've ever been through. Pay attention!"

• COL...
• Taken for 5 to 10 years
• March 5, 2019

"I have been on mercaptopurine since 2010. I was put on this medicine after I was first diagnosed with Crohn's and had a bowel resection. I have taken this medicine for 9 years without any problems. I am now at a point where it is no longer working, and they are putting me on a new prescription."

• Jnd...
• Taken for 1 to 6 months
• October 29, 2016

"I've been using this drug for just over a month, and everything seems like it's going downhill. This drug will make me extremely tired but also keep me awake. It's too inconsistent for my body. It should be helping with bodily functions and minimizing pain, but it does quite the opposite. Some days my body can't move very fast because of the pain. And if it's not the pain, it's fatigue all day. I've had the same problem with other drugs like this. There has to be a way to help without all of the drugs or surgeries."

• Anonymous
• February 14, 2017

"I've been on this medicine for 2 months. I feel, most days, like I've been in a car accident. The pain is very difficult to handle. I ache like I have the flu. Thinking about not taking it and taking my chances. What could be worse?"

• Eda...
• Taken for 5 to 10 years
• March 12, 2020

"I've been on 100 mg mercaptopurine per day for a good few years for the maintenance of Crohn's with zero noticeable side effects. I don't feel like my immune system has weakened either. I am, however, only in my twenties, and I surmise I will start noticing problems in the future."

• mic...
• Taken for less than 1 month
• January 19, 2013

"I have been on this medicine for a week. I have no energy, and I only sleep about 4 hours a night. I can fall asleep but can't stay asleep. I think I am going to ask my doctor to switch me to something else. I can't focus very well with this medicine."

• Anonymous
• Taken for less than 1 month
• November 21, 2021

"I'm using this medicine for 3 days now, and since 2 nights, I haven't been able to sleep properly. And I also have nausea till 11 a.m. the next day because I take my medication at dinner time. For now, this is my last resort before they put me on biomedicine. I hope I feel better and less tired soon."

• jas...
• Taken for 10 years or more
• October 5, 2023

"Was on 50 mg maintenance after being diagnosed and hospitalized in 2003. Worked great for almost 20 years with no side effects. Recently, the drug has stopped being effective as Crohn's has progressed. Doctor said this can happen in the 40s-50s but they are not sure why. Failed 3 biologics in a year, so probably going to try Rinvoq."

• Bre...
• Taken for 10 years or more
• July 20, 2020

"I’ve been on mercaptopurine (50 mg 4 days a week, 25 mg the other 3) with 100 mg allopurinol for almost 15 years. I’m asymptomatic and always have been. Crohn's not detectable in blood work, zero pain, can eat anything, and I run ultra marathons (lucky, I know). I have had a gastrectomy and months in the hospital and don’t want that again. I’m scoped every 2 years, and I have no Crohn's in me. I have zero side effects. They tried me on azathioprine, but it made me vomit so much I was hospitalized. It’s old-school, hardcore, but works well for me."

• Anonymous
• November 13, 2010

"My numbers improved a little bit, but I felt horrible the whole time taking it, plus I had severe side effects such as pancreatitis."

• Ber...
• Taken for 1 to 2 years
• March 15, 2020

"I have side effects of fatigue, so now I take the pill at 8-9 pm. I do feel the side effects while I am asleep."