Comment from: dj, 35-44 Female on Treatment for 6 months - 1 year (Patient) Published: June 08

I am on for Colitis which I was diagnosed 3 years ago. Tried other treatments ... they worked on and off. Prednisone still the miracle drug for me - but I have been off of that for 4 months with no issues. I have been on 6MP alone with no other supplements since stopping prednisone - I have no side effects to the drug and I am finally feeling that I again live a normal life.

Related Reading: colitis | prednisone

Comment from: mom2zoemarie, 35-44 on Treatment for 5-10 years (Patient) Published: June 01

treatment for crohn's disease past 7 years. not able to take 5-asa's (sulfasalazine, etc.) effectively so had to find an alternative treatment. very mild side effects & my life has improved dramatically since treating w/ 6mp. have not had one serious flare since i began this treatment.

Related Reading: crohn's disease | sulfasalazine

Comment from: 55-64 Female on Treatment for 1-2 years (Patient) Published: May 27

Purinethol worked immediately after a dozen years of trying steroids and antibiotics. No perceptible side effects. Has changed my life and lifestyle. Have been able to function as a normal individual for the first time in over a dozen years.

Related Reading: purinethol

Comment from: ablelady2002, 45-54 on Treatment for less than 1 month (Patient) Published: August 20

Was on this medication for 2 week for Crohns and was hospitalized with a fever of 103. Ended up with Pancreatitis from this medication. I know this is rare, but please be cautious if you develop a fever, vomiting, aches and lower abdominal pains. Don't waste time, go directly to the ER.

Related Reading: fever | pancreatitis

Comment from: mh, 35-44 Female on Treatment for less than 1 month (Patient) Published: September 17

Allergic to sulfasalazine, Colazol/Asacol ineffective in treating steriod dependant UC - tried Purinethol - Massive allergic reaction - 106 fever, spine and joints freezing up in pain, hives, spots on tongue - several doctors unable to diagnose - discontinued drug. In remission on nicotine therapy.

Related Reading: asacol | hives | nicotine

Comment from: 25-34 on Treatment for 2-5 years (Patient) Published: July 09

While this drug has helped me with my colitis for the most part, my Dr. did not warn me ahead of time that I cannot come off of it. Also my specialist never told me the birth defects and harm that could happen if I get pregnant. I am 33 and want children and just learned from my main Dr. that if I get pregnant while on th is drug the child willmost likely have severe birth defects. Now I don't know what to do and what medication to take going forward. I wish my speicialist would have covered this information prior to me ever starting this medication. It will be a sad day if I learn I cannot have children because of this drug. Also, I have had to closely monitor my blood levels and have walked a fine line with having the dosage high enough to work but low enough so my white blood cells and hemoglobin don't go too low. It has been really tricky but usually 2 tablets a day is best for me but sometimes they force me to drop to 1.5/day which usually means my colitis symptoms will start to come back.

Related Reading: colitis | birth defects

Comment from: cmg, 35-44 Female on Treatment for 10+ years (Patient) Published: December 13

I have had ulcerative colitis for over 20 years now, and since I started a daily regimen of purinethol my flare ups have subsided. I take asacol two times a day and a multi vitamin and purinethol once daily. i am afraid of the side effects, but the positive lifestyle changes have warranted the possible side effects in the future. with exercise and consistency in taking my meds, i have limited the episodes of flare ups to minor ones every six months or so (non hospital stays). Good luck to all who have inflammatory bowel diseases, they are no fun!!

Related Reading: purinethol | asacol

Comment from: Jeff, 25-34 on Treatment for 1-2 years (Patient) Published: June 05

It works and I can function in a normal life style. I do not know what is down the road for me for now it is the durg for me. It make have an effect on my outlook on life, I am told I am more aggression with people especially with the family. I am hoping the longer I take it that will change.

Comment from: las, 55-64 on Treatment for 10+ years (Patient) Published: November 29

drug used for treating crohn's. Currently in remission.

Comment from: Ernie, 65-74 on Treatment for 2-5 years (Patient) Published: December 11

I have autoimmune hepatitis. Because I was allergic to Imuran and its generic, I was given Mercaptopurine and have been on it for 3+ years after taking prednisone for 4 months. It has worked wonderfully with few side effects. However, I have started having trouble with urinary tract infections. Over the three years, from having 1 to 2 a year, this year I have had 4--the last 2 coming within 8 wks of each other. I was taking Bactrim's generic and it became ineffective. With the urinary infection, I have terrible abdominal and back pain, swelling, trouble urinating, burning, and fever for about 2 days. I have stopped the mercaptopurine to see if it is causing that problem, despite my Dr's objection. Does anyone else have this problem with this drug?

Related Reading: hepatitis | imuran | prednisone

Comment from: Joe, 19-24 Female on Treatment for 1-6 months (Patient) Published: February 16

This is by far the worst medicine i ever used since having this disease. Since I started taking it i had multiple side effects, being exhausted was one, the other ones where heavy pain around the stomach area ,skin rash , brain fog and all my crohns complaints actually came back. Cramps, feeling constant ill and other issues. Since I started taking this I noticed something changed my body didn't felt the same and the pain was killing me, how ever my specialist wanted me to keep using this terrible drug for over a month and I'm saying right here: if you got severe pain in your stomach area or liver stop the medicine at any cost, you most likely are ruining your liver/pancreas really bad! Which happened to me, your specialist will let you do blood tests every few weeks but listen to your body! I ended up in the hospital because i damaged my body pretty bad. Ask for entocort if you have light to medium crohn. Ask for prednisone medium to severe, when under control entocort. I'm saying this because most of the other medicines for this disease are total trash and not working at all, i been off it for a few days and i have been feeling better since ALIVE! The paper with the side effects are inaccurate and it's not 1-100/1-1000 people who get pancreastis or any liver issues due this medicine! It's so much higher i can just tell from the people I spoken with in the hospital and online! Becareful and for your loved ones pay attention! If you have a medicine that does the trick and it's okay, be sure to have some spare, incase your specialist wants you on something "better". Hopefully it won't effect you like it did to me!

Related Reading: rash | liver | entocort

Comment from: Rara, 25-34 on Treatment for 1-6 months (Patient) Published: June 15

I started taking Purinethol after Crohn's disease diagnoses. The drug seemed effective as I wasn't experiencing much pain, however I can't be sure if it was directly related to the medication or not as I had just had my ileum removed (the main source of my pain and flare ups). Side effects of the medication was discolouration to my skin, so I went off it (unknown to my gastroenterologist). I have since been off the drug for 4 years and have not had a major flare up and very minor sensitivity. I chose an alternate route with a naturopath, and other alternative health care professionals. I am forever grateful. This has worked for me and has been very effective. I don't get flare ups, am a healthy weight, and am very happy. Taking the drug didn't sit right for me, that is why I seeked alternative help, even though my GastoE said there was no other option for me other than to take the medication. Just advising that there are other ways

Related Reading: purinethol | crohn's disease

Comment from: willie, 65-74 on Treatment for 10+ years (Patient) Published: December 30

After taking this drug for approximately 25 years, the Mayo clinic tells me there is a very good chance that it was the cause of sever scare tissues in my lungs. I also have a sever loss of hearing--maybe the result of the chemo as well. My doctors never warned me of these possibilities.

Comment from: 65-74 (Patient) Published: June 20

I was taking it for Crohn's since 2001. It stopped my Uveitus attacks. Please do research on this. I was just taking off. I got a uveitus attack right away . I now know I have osteoarthritis in my hands, knees, neck, wrists and back. The generic does not work. The brand has been removed from the market. Please bring it back.

Related Reading: osteoarthritis


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Comment from: 25-34 on Treatment for 5-10 years (Patient) Published: October 29

so i have been on this medication since i was 18. now im 26. i rading reviews about this medication and having kids ..... the side effects of it. does anyone know if i stop taking this medication for the time of the pregnancy is there still side effects ?

Related Reading: pregnancy

Comment from: martoons, 35-44 on Treatment for less than 1 month (Patient) Published: January 21

I had severe crohns disease for 20 years and had 2 resecction surgeries. after a month of taking Puri-Nethol I was in hospital with pancreatitis. I spent 11 day in intensive care and 6 MONTHS in hospital. I could not eat for all of those 6 months. I was very very sick and was told i had a 1 in 4 mortality rate. Before I went into hospital I had night sweats and bloating so i was not told by doctors what to look out for. I would reccomend that you take this drug with EXTREME caution. While i was in hospital i got a blood clot in my neck, i got septicemia after they put in a biliary stent, i got fluid on the lung, i had blackouts from not eating and lost 5 and half stone in weight. I cna easily this was the worst time of my life. and a week after i returned from hospital my husband told me our marriage was over. so this drug took everything from me. I am off most medicines and the only drugs i take now are zydol to help with regularity and creon for the pancreas so pleses make sure and keep an eye on any side effects no matter how small. it could save your life.

Related Reading: pancreatitis | night sweats | creon

Comment from: Cheryle, 55-64 on Treatment for less than 1 month (Patient) Published: April 05

I am taking 50mg of purinethol per day also 25mg prednisolne, I am experiencing not so much dizzy ,but feeling like I am in a goldfish bowl looking out. I get hot flushes & sometimes my heart seems to race.

Related Reading: purinethol

Comment from: sher, 55-64 on Treatment for less than 1 month (Patient) Published: February 06

It caused Pancreatitus for me. Most pain I've ever been in. 1week in hospital trying to figure out. Temp of 103, very rapid heartrate, severe hydration and another week in different hosp where they finally figured it out. Wouldn't wish this on my worst enemy.

Comment from: 25-34 Female on Treatment for 1-6 months (Patient) Published: February 04

This drug is awesome. I love drugs.

Comment from: 25-34 Female on Treatment for 1-6 months (Patient) Published: February 01

This drug is awesome. I love drugs.

Comment from: 25-34 Female on Treatment for 1-6 months (Patient) Published: February 01

This drug is awesome. I love drugs.

Comment from: tweetybird, 45-54 on Treatment for 1-2 years (Patient) Published: February 02

I have had ulcerative colitis for 20 yrs. I have been on lots of meds and suppositories. This medication has given me back my life. I am worried about long term affects which have not been documented yet. Overall, amazing pill.

Related Reading: colitis


Medical Editor: John P. Cunha, DO, FACOEP

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