There are 286 ratings for the drug: PURINETHOL in the Askapatient database.

The average rating for purinethol is 3.5.
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Key to ratings for purinethol:
5-Very Satisfied: this medicine cured me or helped me a great deal.
4-Satisfied: this medicine helped.
3-Somewhat Satisfied: this medicine helped somewhat.
2-Not Satisfied: this medicine did not work to my satisfaction.
1-Dissatisfied: I would not recommend taking this medicine.

                    
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 5  Ulcerative Colitis None I have been "on" 6MP for five years, after other meds for UC did not prevent symptoms and flares. It worked for me almost immediately. Although I experienced no side effects, I decided to see how low a dosage I could get away with. I only need to take 100 mg about once every two months in order to prevent return of UC symptoms. It is true that I had a relatively mild case of UC, but still, bad enough to land me in the hospital twice in the first 18 years since I was diagnosed, and I was never free of symptoms until I started 6MP. F 56 5 years 12/10/2009
 4  ulcerative colitis tiredness, lack of concentration, loss of appetite, dry skin, slight loss of hair, mood swings i was diagnosed 2 years ago with UC and 6MP definetly saved me from a lot of pain etc etc. however, i still hopw there is a way of weaning myself of it. i would hate it to effect my fertility M 18 2 years 11/29/2009
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 3  Crohn's Disease Bloating, rapid weight gain, headaches, joint pain, nausea. Was on Azathioprine for a couple years, which gave me no problems. Not sure why, but doc switched to Purinethol a few months ago. Since the switch, I have developed frequent headaches, nausea (which I have never really had before on meds), moderate to severe joint pains and rapid weight gain. I will be contacting doc to go back to Azathioprine if possible. F 37 60 days 11/13/2009
 3  ulcerative colitis chronic fatigue, skin sensitivities, skin cancers, joint pain, depression, weakness, difficulty concentrating I have had uc for 16 years and I take 100mg of 6mp in conjuncture with lots of asacol. This keeps my colitis from flaring up and my last colonoscopy looked great. But at what cost? I feel like it's eating up the rest of my body. M 44 7 years 10/2/2009
 4  Crohn's Nausea, faintness, dizziness and fatigue at first, which subside after about one month. Still have lack of appetite, possibly worsening of acne and tiredness. Possibly neck pain. Taking 50mg daily for an indefinite period for maintenance of remission after bowel resection. My WBC count is now under 4000. Took this drug in the past for 3 years. M 28 4 months 8/19/2009
 5  Crohn's Just a lite fatigue. But I aways feel great. This is the only medicine that has saved my life. I have had crohn's for 25 years.H Had my share of fistula and was on disability. I do work full time and live life like I was sick....my only side effects shingles....herpes zostors. F 47 19 years 4/12/2009
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 4  crohn's nausia i was diagnosed with the disease 3m before i turned 11 and have been on an immune suppresant before for about 3yrs but when i started it i was put onto entocort too and had a side effect of nausia. ive only been on purinethol for a short while now but was again put on the entocort at the same time. only real side effect was nausia but i dont know which was causing it. this has since disappeared. my guts arent cramping and only occassionally ache for short peroids and my stools have firmed up quite a bit and im going to the toilet less. food intake is about the same. am alittle tired but thats prob due to the late nights and boredom looking for a job, but after saying all that i dont know which of the two drugs is helping the most, or if its the combo or if my body reacts well to these drugs. im having a blood test today, so heres hoping its all as good as it seems. F 24 2 weeks 4/6/2009
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 4  Crohn's Disease None that I'm aware of. I started taking this along with Remicade infusions. I take 50mg a day. This along with the Remicade helped, but I eventually decided to stop the Remicade treatments. My GI doctor put me on opium tincture, and that seemed to kick my flare. Since then, I've been pretty normal & just take the 6mp every day. Anyone who's not having much luck with anything else aside from steroids may want to look into opium tincture or a similar narcotic since narcotics themselves cause constipation...kind of like a reverse effect. It was an extremely small dose, so I didn't feel anything & was able to go about my day normally without any side effects. Just don't overuse any narcotics...I just read on about.com that the OVERuse of narcotics may cause Toxic Megacolon. Great things we with IBD get to worry about, right? F 28 4 years 3/23/2009
 4  ulcerative colitis When I first started taking 6mp i had leg pains for the first 2-3 months, then it went away. Didn't notice any hair loss, maybe a little bit of fatigue. I used to take it in the morning now I take it at night to fight off the fatigue and it seems to work. Also noticed recently that my cuticles are starting to crack and became sore. I have had uc from 1999. Usually had mild flare-up every few months. Had a severe flare-up in 2006 where I had lost 20 lbs in two weeks and was dehydrated. That got me into trying some herbal supplements I read about in Jini Patel Thompson's book. I continued to take asacol until I had my last flare in 9/2007. Had to take Prednisone and then started the 6MP at 50mg a day. I have been free of any symptoms since I (reluctantly) started the 6mp.(No more Prednisone) I am starting to implement more holistic healing so that I can start to wean myself off of the 6mp but it has help me tremendously. F 51 15 months 1/30/2009
 5  CHRONS DISEASE originally was more tired, but thats better now. ive had the longest cold ive ever had this year...maybe due to this drug, i dont know. for the most part, ive had little problems and its working. blood counts are normal. 120 days 1/13/2009
 4  Crohns slight hair loss, low immune system, light trouble sleeping, little weight gain I was diagnosed with Crohns 11mo ago. In & out of the hospital for a reoccurring abscess, took endocore, pentasa & prednisone & azothioprine together, finally had surgery to remove a portion of my intestine since it would not go away. My GI doctor put me on Purinethol about 4 months, I have felt pretty good, I noticed I get sick easily. I hope that this continues to do good things for my Crohns. My question is it ok to take things like probiotics & immune boosting suppliments for normal health (like colds) or do they counter act the Purinethol F 23 4 months 1/6/2009
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 4  Crohn's of large been so long so not sure what is Crohn's, what is purinethol and what is just me Been taking for so long I don't know. But recently talked to sister in law who was on it just a year, and said she felt so much better energy and mood wise after getting off of it. Got me thinking. I can't remember ever not feeling tired in my adult life, unless I drink a lot of coffee. Maybe that would be the case anyway. I have had 5 episodes of bad depression in 20 years and still is low grade. As far as the crohn's, purinethol has always helped and when I tried to get off it, I immediately had terrible pain. I have only had to have one surgery so far and on 50mg now, I feel lucky but wonder why my fatigue/ mood issues exist. M 38 20 years 12/26/2008
 3  Crohn's disease Excessive nausea, lack of appetite, fatigue, headaches, mouth sores, thinning hair. Have some days where I can't get out of bed, which is depressing as hell. Been on the drug about 5-6 weeks so far, running to the bathroom less but also unable to eat bc I feel so lousy, so that may be why. Stomach cramps and joint swelling have not reduced, was told must be on drug 4 months to see positive results. Not sure if hair is thinning bc of drug or because of nutrition issues due to lack of eating. So far, this drug sucks. F 36 6 weeks 11/29/2008
 3  Ulcerative Colitis Extreme fatigue, manic mood swings & depression, weight gain, , headaches, bloating, hair loss, back pain, menstrual issues I'm trying 6-MP in lieu of prednisone. 150 mg per day. So far I've had no colitis symptoms, but I've only been off the prednisone for 5 weeks. Anyone who suffers from UC or Crohns knows how unbearable those symptoms are.....in comparison to being sick (and compared to prednisone), the side effects of 6-MP are bearable, but its still no picnic. F 35 3 months 10/23/2008
 4  Ulcerative colitis I don't gain weight is very unstable, I shed hair like crazy, I haven't grown in a while, and I get kidney infections constantly My gastroenterologist thinks I have an eating disorder all because this drug has caused me to lose 12 pounds in the last three months, but i've gained weight to, but then I lose it all M 15 3 years 9/12/2008
 3  crohn's very tired, weak, problems with menstruation i was doing ok until the doctor increased the doseage because he wanted to get me off the prednisone. he took me off the purinethol when my blood work wasn't too good. now i'm waiting to feel better. F 40 6 months 8/30/2008
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 4  Ulcerative Colitis When I get bruised or cut it takes months to heal, and I experience vertigo constantly and sweat more easily. I got used to all side effects though It helps me way more than any other drug i've taken in the 5 years since I was diagnosed M 15 3 years 8/11/2008
 4  Crohn's Disease Fatigue, anemia. shingles, cold sores Purinethol was a better choice for me than prednisone at the time. I was to stay on it for 2 years; it has been 25 years. I am now having tests to make certain I am in remission so I can stop it. The fatigue has become increasingly worse. F 55 25 years 7/3/2008
 3  Crohns Disease Nausea, bad taste in mouth, tiredness, sore joints, bloating (appeared in the last couple of days) generally feel unwell I have had Crohns for 20yrs and lots of surgery. Recently had major flare up again & very reluctantly went back to medication. Not convinced this is the drug for me if I feel this unwell taking it. Only good thing is the diarrhoea has slowed down. F 43 1 months 6/2/2008
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 5  Crohn Skin problems,tirednees, alcohol intolerence Havenīt feelt better since I startede using this drug. Can live with the skin problem as long as my diseas is fine. No fisteals and no hurting joints any longer F 39 4 years 4/22/2008
 4  crohn's disease Anxiety, Panic Attacks, heart palpitations, nausea all happened as I tapered off the drug. Nausea when I started it, but was great for my crohn's. Was on the drug for a year, started to taper off and everything kicked in. It was hard to get off the drug, but it did great for my Crohn's in combination with a holistic diet this drug is a miracle! M 31 1 years 4/2/2008
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 3  Crohn's The first week I experienced dizziness/vertigo while lying down, and an insatiable appetite. I've gained weight, felt less motivated, more tired and lazy, a bit "down". After the first week of taking Purinethal, my Crohn's flare cleared up tremendously, but that lasted three or four days. Then I started having mild flare symptoms again. My doctor says that this is normal and it will take about 8 weeks for the meds to become in sync with my body, at which point I will start to improve again and stay stable. F 28 1 months 3/17/2008
 4  Crohn's I have not had too many side effects, just darkening of skin and extreme dehydration when I wake up in the morning. Been on it for 7 years. I am female, 35 yrs old, and 125 lbs. My dosage was 50 gr daily and then after a flare-up and surgery, I have been on 100 grams a day. I am curious if anyone else is on 100grams or more? It seems most people are on 50-75 grams. F 35 7 years 12/11/2007
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 4  Crohns0 I seem to get colds easier than before. Of course having a 2 year old who brings home a lot of things from preschool, I can't be 100% sure purinethol is the cause. M 46 10 months 12/10/2007
 2  Crohns Disease Nausea; developed lung cancer at an early age (44 yrs old). I smoked cigarettes, unfortunately, despite several doctors' repeated advice that I should quit, while I had Crohn's symptoms. 6mp stopped working and I ended up having a small bowel resection after 10 yrs of Crohn's. Thank god I haven't had any symptoms return since the operation. But, I did develop lung cancer at a relatively early age, I believe partly due to the 6mp. I had my right lung removed 4 years ago. Don't smoke w/ 6mp!!!!! M 7 years 12/3/2007
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 1  Ulcerative Colitis Bacterial Imbalance and Candida. BLOATED and EXHAUSTED every day. Lethargic, depressed, constipated, out-of-it, cold/flu every couple of months, tons of sinus infections. I've been in the hospital 6 times in the past 15 years with Colitis. So I know that nothing is worse than a flare-up of Ulcerative Colitis, I agree.... However, please try to treat this disease HOLISTICALLY. Acupuncture, Herbs, Yoga, Therapy, DIET. Stop looking for a quick fix. This disease requires lifestyle changes and active management. You can't just pop a pill like they tell you. (I know, I've tried that route). After 1 year of 6MP, I had the aforementioned symptoms. They've been with me for 3 years since I stopped the drug. Currently working with a Holistic Doctor to treat all of this and get myself "back on track." I've been symptom-free on NO MEDS for 3 yrs. They think IBD is a genetic autoimmune condition - fine. Make LIFESTYLE changes. NO DAIRY. TAKE PROBIOTICS. See a Holistic Practitioner. Get out of the Western Medical System!!!! Western MDs and Pharmaceutical companies don't make money when you're healthy. F 30 1 years 11/24/2007
 3  Crohn's Dizziness and vertigo throughout the day, extreme sleepiness just after taking Have only been taking it a week (50 mg), but haven't seen much about vertigo, so thought I'd post to let others know how it feels to me. I take the 6 mp at night because shortly after taking, I experience extreme fatigue -- almost as if I can't move. Am hoping that these side effects will subside over the first few months. F 44 7 days 11/5/2007
 3  Crohn's Disease hair loss, joint & body aches, excessive sweating, extreme tiredness I'm very leary about this medication. I was on it in 2002-2003 and stopped taking it because I hated the way it made my body feel. I also had Remicade Infusions in 2003. I cannot tell if it helped. I was hospitalized this past August for a really bad Crohn's flare up. My doctors brought up 6MP again and even though I had been against it for the last few years, I decided to trust them since they stated many patients are on it with high success rate. I've been on Prednisone since March and am finally down to only 10 mg a day (I wean by 5 mg per week). I've been on 6MP again since August and started at 50mg a day and now am taking 75mg a day. My blood work so far has been good but the way I feel is horrible. I'm tired of waking up every day and feeling like I have the flu. I don't know which is the lesser of two evils. I've also come down with a bad cold/cough this week and fear that my immune system is very weak. Raising a 3 year old isn't easy when you constantly feel horrible F 41 4 months 11/1/2007
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 3  Crohn's None initially. However, after about 2 years on 100 mg. I began to develop skin cancers. My dosage was eventually reduced after some blood work to 75 mg. and I stayed there for the next 4 years or so. The skin cancers began to appear in greater numbers, first as basal cell then as the more aggressive squamous cell. No doctor made the connection; they all assumed I spent too much time in the sun. I discovered on my own the increased risk of squamous cell development in patients taking purinethol and I asked both my gastro and my dermatologist about it. Neither would admit it although they acknowledged the studies I found. After developing a new series of squamous cell cancers a few months ago, I just stopped the medication. If anyone is interested, try natural flax oil softgel capsules. I feel better than I have in years. Purinethol seems to have stopped the flares, but it has ravaged my skin. I'm better off without it, and if you'll research GI studies using flax oil in Crohn's patients, I think you'll be surprised. Looks like the best kept secret in the world of Crohn's. M 52 6 years 10/23/2007
 4  Crohnes Disease None for the first several years but recently after getting married when my wife couldn't get pregnant I found I had a low sperm count and soon after developed atrial fibrillation in my heart. I found other accounts of these side effects with others on the internet and soon hope to be off of the drug. If these problems go away I will definitely attribute it to the drug. Please ask your Dr. about fertility if you are on this drug. The answer may shock you. This drug probably saved my life but I beleive it caused other problems that I hope can be resolved and not affect me for the rest of my life. M 29 8 years 9/20/2007
 3  Crohn's Hair Loss & Nausea I want to know if the hair loss eventually stops? F 49 1 months 8/31/2007
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 4  colitis I am just finishing up with the predinsone after being on it all summer. I just turned 21 this summer and I havn't drank all summer because the doctor told me not to. Now I am off the predisone and about to go back to college. The doctor just put me on 6mp because the intestines were still inflamed but better than before. I talked to my friend and he said he drinks with fine with it and my research on the internet just shows you have to experiment for youself to see how your body reacts and there shouldn't be any bad reactions like there could be with mixing alchol wiht predinzone. My question is that the doctor told me to no drink more than 2 beers a week simply because I need to take blood tests for the first couple months on 6mp. If my body reacts fine to the alchol on 6mp, will say 6 drinks a week really throw off the results in the blood test or which test do you think hes referring to that it could throw off the results. I want to obey the doctors wishes but I also want to be rea M 21 2 days 8/30/2007
 2  Crohn's Anal Fissures developed. Docs never found the relationship. I happened to have stopped the med due to high liver enzymes and puff! fissures stopped. It is called mucositis. Stopped taking it. M 45 3 years 8/20/2007
 4  crohns disease -blockages weight gain, hair loss I have had crohns since 14 years old.Had surgery at 16 to remove ileum and parts of intestines,have majorly suffered all these years.Used to be on flagyl(which would help for about 2 weeks) ,sulfasalizine,Questran powdered drink in the 70's. Flare up with pregnancy brought me back to hospital. Living in fear,staying home,not enjoying life as it was. In 2006,I developed a series of 3 intestinal blocks .All which I was hospitalized for a week each time. Tests tests and more tests,and then my internest introduced me to a wonderful dr. here in NY who weaned me off of steroids slowly and put me on 6mp. Its now been 6 months and with weekly to monthly blood work I am living a life that is so different than the last 35 years of my life I take an imodium each day ,30 minutes before lunch, sulfasalizine and a acid pill and those all help too.Although I know I am not cured ,this medication has given me a new life.I do have hair loss and weight gain.Dr explained that now that all the swelling F 52 5 months 8/16/2007
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 3  for Crohn's Disease, and fistulas Hair loss, itchy rash, joint pain ,sore mouth. acne (pustules)low grade nausea, aching legs, tiredness. I have taken purinethol for eight years, and the fistulas persisted for all that time. After reading articles that speculated on the reason for the immune system over-reaction as being due to some bug in the gut,I started taking Acidophilus - capsules of five billion organisms, eighteen a day, reducing gradually to two with meals. My fistulas cleared up within two weeks of taking the Acidophilus. I have recommended it to many people who all reported relief from Crohn's. I wonder if acidophilus will also be effective with other auto-immune diseases. The side effects I suffered, have not been severe and I didn't at first attribute them to purinethol, but now I do. Incidentally, a year after beginning to take the pro-biotic - Acidophilus - a blood test, and a colonoscopy showed no signs of Crohn's at all. My doctor told me I was 'married to purinethol.' I disagree and have ceased to take purinethol. The annoying thing is that my GI doctor never told me of the range of side effects, and I M 69 8 years 8/16/2007
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 3  Crohn's I have experienced a few side effects, from dizziness, to neusea, to loss of apitite at times, i think im starting to loose my hair, or at least it is thinning greatly. i take 75 mg daily weigh 105 pounds and take 9 asacol a day which causes headaches, overall i would say i havent seen a great improvement from this drug. if anything i feel bad overall more consistently. i get very tired dont have energy to do much of anything. F 31 2 months 8/7/2007
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 3  Crohns tiered,fever,nausea, weight gain, chest pain.. I had the Infliximab infusion as well about 5 weeks ago. But the puri-nethol i think is to blame for my hot and coldness, weight gain and chest pains. I feel ok, no more bad bad stomach pains, but you know still just not right. I feel nausea, dizzy and dont have much energy to use most days. I get max 1 hour of house work done and thats it for the day! I don't know if it will work for me yet? Does any one know about the real effects on pregnancy? F 25 4 weeks 7/24/2007
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 1  Crohn's Acute pancreatitis As several others have also experienced, I was fine until the dosage was increased, at which point I began vomiting blood. Went to the ER and was diagnosed with acute pancreatitis. While this may not a side effect for many, I would not recommend this medication. M 31 3 weeks 7/20/2007
 5  Crohn's Disease None I was on Prednisone for 6 years, and could never quite shake it. I dropped down to a 5mg/day dose, and couldn't get lower. It wasn't until I was prescribed 6-MP that I was able to get off Prednisone entirely. I suffered no ill effects from 6-MP, but I did have to get regular blood tests to ensure I was not experiencing an adverse reaction, such as anemia or liver problems. I have been on a mild dosage (100mg/160lbs), and have been in complete remission the entire time. I do still get regular checkups, as anyone with this disease should, but I have been healthy and active. M 36 5 years 7/18/2007
 2  Crohn's Disease nausea, strong headache, fatigue, abdominal upset/pain, dizziness I was hospitalized two times before being diagnosed with Crohn's Disease at the age of 30, both at the same year and both times treated with Prednisone and after the hospital stays took Sulfasalazine (AzulfidineŪ). Before that time I took antibiotics like metronidazole (FlagylŪ) and ciprofloxacin (CiproŪ) but did not work out. On Dec 2006, after being diagnosed for Crohn's I started with Pentasa and Entocort till on March 2006 I was not showing improvement and was completely obstructed. At that time I had laparoscopic ileocolic resection to fix it (surgery that removed the ileum and cecum part). After the surgical procedure I started with 6MP and for the first two weeks the side effects seem normal (mild headaches, stomach upset and weakness) but they increased week by week, after 6 weeks my doctor recommend increasing the doses from 50 mg to 100 mg a day. I started with severe abdominal pain, dizziness, strong nauseas and headaches. I am still scared based on what I h M 31 2 months 7/5/2007
 2  Crohn's Disease Made me feel sick in the morning after I took the pill. After the doctor bumped up my dose, I felt more sick and eventually wound up in the hospital with mild pancreatitis which I believe was caused by the 6-MP. Initially prescribed Prednisone, Asacol, and 6-MP all at once. Prednisone made me feel 100% better but the doctors worried about long term effects and tapered me off. The 6-MP seemed to be making me sick, esp. after the doctor increased the dosage. I wound up in the hospital for a few days with mild pancreatitis which I believe was caused by the 6-MP. Once off of all medications but Asacol (and over the counter drugs such as Immodium and Digestive Advantage Crohn's) I felt good and was later diagnosed as being in full remission. SUMMARY: It's hard to evaluate Crohn's medications because they make you take so many all at once. However, I am convinced that the 6-MP did little to nothing for me and believe that it caused the pancreatitis that landed me in the hospital for 4 days. M 31 7 months 6/25/2007
 4  Crohn's Disease For the first couple of weeks, bad fatigue, but that passed as my body's adjusted to the drug. Also took it last thing at night to avoid the nausea. I was diagnosed with Crohn's Disease at the age of 30, just 10 weeks after my daughter was born. After trying other meds, this is the one that really works for me. I feel fantastic on this drug! I believe it has put my crohn's into remission, and am hoping to try for another baby whilst continuing on the 6mp. Have done loads of research, and would rather maintain remission on the drugs than risk a flare whilst pregnant! I stopped taking 6mp for 4 months to try for a baby (with no luck), and the crohn's flared, so was back to square one, and don't want to risk that happening again! I don't find that I get any more colds/flu/illnesses because of it either. I guess long term I am concerned about possible side-effects, but my doctors do keep a close eye on me and my blood results, and I'll continue for as long as they determine. I also take Salofalk (mesalazine) which I think really helps too. F 32 12 months 6/16/2007
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 5  Crohn's Acne, fatigue, maybe depression? After trying almost every drug available for Crohn's and reacting badly to all of them - methotrexate increased my crohn's symptoms, immuran gave me pancreatitis, etc - I finally tried 6mp and it's the only thing that has put me in remission and not given me any major grief. Don't give up even if everything else hasn't worked - this saved me!! F 21 4 months 4/27/2007
 4  Crohn's disease extreme nausea, headaches All in all, I was petrified to take 6-MP, but anything's better than Prednisone. I've had Crohn's disease since I was 14, but I was diagnosed at 16. I was initially on Pentasa (5000 mg) and I still am, but it wasn't successful. Now I take Pentasa, Sucralfate, AciPhex, Entocort, and 6-MP. It's a lot, but I'm managing. I have a fantastic doctor. My blood levels look great and infertility DOES NOT SEEM TO BE A PROBLEM. My doctor says his own daughter is on it and it's done nothing but help. Overall, I'm feeling better, but I don't know which medicine to really attribute it to. I'm not concerned about the leukemia. My doctor knows quite a few women who have conceived while on this medicine and given birth. Don't listen to the horror stories, they're only there to scare you. Fortunately, no hair loss, which I heard was common, but that usually only happens in cancer patients, because this medicine's main purpose is to treat cancer (lymphoblastic lymphoma). F 18 2 months 4/17/2007
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 1  Crohn's Disease Pancytopenia, bone marrow toxicity/suppression mouth ulcers I was on 6-MP. I got mouth ulcers. No medication would clear them up. Within in 3 weeks of the first sores appearing I was in the hospital in isolation because my bone marrow failed. Low red blood cells, low white blood cells and low platelets. Not fun at all. Can no longer take this med. F 46 2 months 4/13/2007
 4  Crohn's I have been lucky, no real side effects, sometimes a little fatigue and sometimes catch colds quickly. Was diagnosed with crohn's at 17 yrs old. I have had 6 surgeries and a illeostomy for 7 months ( now reversed). I have been taking 50 mg for 6 yrs. At one point I went off it a year to try and get pregnant and I had a nasty flare-up and had to have surgery. I went back on the drug and have been fine now for 2 yrs. Two surgeons told me to NEVER get pregnant on Purinethol as no enough studies have been done and my crohn's specialist said to try anyways and see. I ended up adopting a baby instead. I didn't want to take the chance. F 34 6 years 4/6/2007
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 3  UC Total fatigue...joint pain, weight gain, but has put my Colitis into remission. Took 5 months on the medication to feel sort of normal...have a hard time remembering. I have had UC for 17 years, and couldn't keep my UC under control. Spent 8 days in the Hospital last summer and fought with my Dr. about 6mp. Finally he convinced me to try it...(I was on Prednisone....HATED IT)so started 6mp. Within 1 month, I was symtom free, but the first 5 months were horrible. I was so tired, I felt sick all the time....but now fell better. I have my yearly colonoscopy on the 26th and I am thinking of asking my Dr. for surgery...the long term effects of 6mp scares me. F 43 7 months 4/6/2007
 3  crohn'a F 39 3/28/2007
 5  ulceritis colitis stop all symptoms of bleeding, i havent had a flare up in over two years. M 37 2 years 3/19/2007
 4  Polymyalgia Rheumatica None I could definitely blame on this drug. However blood tests show lower than normal white cell count and marginally low haemoglobin. Looking at the other ratings and comments, all the others are for UC or Chrone's. Is anyone else having this for Polymyalgia Rheumatica? I was diagnosed 2 years ago and have been treated with Prednisolone which worked OK but attempts to get the dose down to a low level didn't work. So I am taking Purinethol as a steroid sparing agent and this has enabled Prednisolone to be cut right down. My Physician believes that Purinethol is much less damaging long-term than Prednisolone. (He tried me first on Asathioprine but I got got nausea with that). I am in the UK. M 63 8 months 3/4/2007
 4  Crohn's disease none that I am aware of, although reading others comments - I do have short-term memory problems and fatigue. I had attributed it to my age. now I wonder. Dx with Crohn's in 1989. Bowel resection in 1992. Off predinisone, but still not well. Started 50 mg daily 6-MP in 1997, been on it ever since. Had a flare that caused a three day hospitalization last August. Had had a colonoscopy three weeks prior to flare (Hmmmmm??). Seems to be working, but I wonder about long-term. Do blood tests quarterly and no problems have arisen. Was dx with breast cancer last March. wondering if related? Still can't eat whatever I want - lactose intolerant and avoid veggies (occasional salad). Still, best option for me. F 49 10 years 2/18/2007
 4  Crohn's disease none F 49 10 years 2/18/2007
 4  Crohn's Nausea, fatigue Diagnosed July, 2006. Was in hospital for 8 days, no surgery. Trying to stop prednisone. When I go below 20 mg, sickness comes back. Also take Asacol and Remicade. Just started Entocort 9mg and Purinethol 50mg due to flare-up. Second day pain went away, but still have bloated, swollen feeling. Blood work is next week. So far okay. M 43 7 days 2/2/2007
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 4  crohn's colitis First months (and any time drug increased) I felt quite nauseous and very tired. This does subside completely (have patience). I was expecting to have more colds and flus, but this has not been the case at all. My immune system seems to be just fine. I had one bout with low blood count and slightly increased liver levels. I felt very tired that week. Dr. lowered dose. My levels are fine now. I can no longer tell that I am even taking this drug. This is a relief. My crohn's is under control with this med., though I still have some arthritis. I was very nervous about taking this drug, and in fact, refused to take it two and a half years ago when I was first diagnosed. Two different Gasto Dr.s told me my crohn's colitis was too severe to just be on the Asacol. I made it two years just fine without it. I had a bad flare over the past Summer and decided to go ahead and try it. I read an article on "Pub Med." that stated more or less that if you let your disease progress too far these drugs may not be able to help you when you do decide to use them. So I took it, and though it was initially rocky, I am great now! I have to say I do not follow Dr.s orders for labs- I GO MORE OFTEN! I recommend the same. Dr. told me I could go every three months now. I still leave him a lab every month; for my peace of mind. I only gave this drug a "4" because I am still concerned about long term side effects I might face. F 39 7 months 1/25/2007
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 1  Ulcerative colitis bone marrow toxicity. Drug induced leukemia I am writing this as a warning. My mother died last night after a short battle with Leukemia. She was diagnosed less than a year ago and it was determined that she developed this due her use of Purinethol. Her chromosome was damaged and she had a bone marrow transplant right before Christmas. STAY AWAY FROM THIS DRUG. IT IS TOXIC. Unless your physician is highly trained and monitors your blood levels weekly, DO NOT TAKE THIS DRUG. F 18 months 1/21/2007
 1  Ulcerative colitis bone marrow toxicity. Drug induced leukemia I am writing this as a warning. My mother died last night after a short battle with Leukemia. She was diagnosed less than a year ago and it was determined that she developed this due her use of Purinethol. Her chromosome was damaged and she had a bone marrow transplant right before Christmas. STAY AWAY FROM THIS DRUG. IT IS TOXIC. Unless your physician is highly trained and monitors your blood levels weekly, DO NOT TAKE THIS DRUG. F 18 months 1/21/2007
 5  chrohns slight hair loss, my psoriasis has completely cleared up, age old misdiagnosis of chrohns for over 10years resulting in an emergency surgery and oh by the way we think you have a problem. On steroids on and off painkillers and elemental diet but always in pain. Since taking purinethol i feel i have my life back i can eat properly my visits to the toilet are now normal for the first time in 15 years. i am so happy F 40 3 months 1/16/2007
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 3  ulcerative colitis does anyone else feel that 6mp is causing them to appear to look older? bags/wrinkles under eyes, deepened lines on face drug has helped my symptoms, but really takes some of the steam out of you. i feel/look 5 years older than when i started a year ago M 38 1 years 12/19/2006
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 5  Crohn Dry mouth after absorbtion and during the day. I was diagnosed at the age of 21, I got to the hospital for a week, got Prednisone for some weeks, decresed the dose to none in about 6 months with the help of Purinethol. I take 75 mg every day, when I wake up later in the morning, I feel the need to take it, I fell like I've got squirrels in my feets or some inflamation in my fingers. I try to keep in good shape by training at the pool and I manage my stress with a meditation course once a week. This drug really stops the inflamation process before it occurs, it is great. I notice major decrese of efficency when I take alchool, but a cup of wine once in a while does no harm. I am a bit worried about some male infertility rumor, but they are no actual studies on the subject. Fell free to contact me by e-mail. M 24 3 years 12/18/2006
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 2  Chrohns, UC Pancreatitis,put me in the Hospital for 11 days. Started with 1/2 dose of 25mg blood tests were fine, but when increased dose to 50mg had a severe reaction. 6mp didn't work for me and for those who take it you need to be aware that pancreatitis can hit anytime. 3 days 9/30/2006
 4  Crohn's/UC Loss of appetite, sore throat sometimes, weakens immune system Generally ok, but if you're underweight like I am the loss of appetite dosen't help. Weakens immune system to other illnesses but that helps against my crohn's and UC. Catch 22. M 19 5 months 8/21/2006
 1  UC Many things, it is better than prednisone, but now I think I may have leukemia I have had UC since I was 14 and I went on this drug to get off of prednisone. It doesn't work, I don't know why I am still on it but a few months ago I just decided to stop taking it. Remicade has worked for me, I am not in remission nor do I feel wonderful and great, but if I can keep my condition moderate instead of back to severe needing surgery(I will never do surgery) than I am happy. I do not reccomend this drug, I do not think its benifits(though I have none from it) outweigh the possibility of leukemia which I face right now at 21. If your doctor is not giving you blood work every 3 months on this edication then they are not doing their job(mine does thank god) F 21 5 years 7/19/2006
 5   6/22/2006
 4  Chrohn's None I had a bad spell with Chrohn's when I was 23. I had a colostomy for seven months, and was put on every drug they offer for chrohn's. Finally I was put on a high dose of Remicade(inflaximoab) which had finally put me into remission. Since then I have restarted lifting weights and now I am training for my first triathalon. M 25 2 years 6/7/2006
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 4  Crohn's I have only been on purinethol for 2 weeks. Not sure about side effects at this time. I have noticed that I am having headaches and I am very tired. Hopefully these will get better with time. I was on Asacol previously but did not control flare ups. F 40 14 days 5/17/2006
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 3  chrons broken and torn nails, very slow to respond to colds, cough starts in February lasts deep into spring, fatigue and more fatigue I have posted before. I am now four years with this med. Within the last 4 months, I have begun to tear and crack nails. I don't remember how long I have been without a thumb nail. You don't know how important it is until its gone. May hair continues to slowly fall out (not genetic). The fatigue is still awful. For the past three winters, I have gotten colds that have lasted forever. They are accompanied by a cough that goes for months. Pul. specialist says my lungs are fine. I just cough. Chrohn's is better. All else worse. M 45 4 years 5/17/2006
 1  Crohn's disease horrible and disfiguring oral and facial lesions resulting in near-fatal staph infection, fever of 105 and emergency hospitalization, migraines, dizziness, blurred vision, chronic fatigue, severe immunosuppresion resulting in wearing a surgal mask and gloves in public for weeks to avoid infection b/c white count bottomed out. had to get a handicap permit as i could not walk more than 10-20 yards without wanting to faint or throw up. i took it for about 3-4 weeks. after developing oral/facial lesions was told by another dr. i had been over-prescribed by 40% over what is recommended for my weight. developed staph infection in face from lesions, along with all the other side effects i listed. was taken off of 6MP and put on gigantic regimen of cipro (used for ANTHRAX!) and other drugs to combat the staph infection. had to move in with my parents for 3 weeks, as i was unable to care for myself. never had a chance to see if it helped my crohn's b/c the side effects completely overwhelmed the CD with more acute and serious issues. CD was brought under control by pentasa, flagyl, and entocort treatment later on. i fired the dr. who over-prescribed me (wanted to sue). took 6 months to recover completely from 6mp and the accompanying infections. will NEVER take this drug again, it almost killed me, F 31 4 weeks 4/21/2006
 1  Crohn's disease i wrote the below oral/facial lesions post. i forgot to add the dr. who over-prescribed me did NOT order ANY blood tests while i was on this drug, ZERO. another sign of complete incompetence. you need to have regular blood tests on this drug to check your white blood cell count and ovarious ther blood chemistry imbalances this drug can cause that can indicate a more serious condition developing like leukemia or liver damage. no blood tests? don't take this drug. F 31 4 weeks 4/21/2006
 5  crohn's possibly fatigue... or none I take 100mg daily. Wasn't sure it was helping, but when I discontinued it, I suffered the worst flareup I've had in years (after a few months of discontinuing) which took large doses of prednisone to control. I think this is the one drug (and I've been on plenty for the last 20 plus years) that really truly works in the long term. Am back on it! F 43 7 days 3/14/2006
 2  Crohn's Fatigue, lowered immune system response, joint aches, lack of appetite...etc. Generally I feel like complete and utter crap on this med. My history: I was diagnosed with Crohn's 22 years ago, and have been off and on this med since I was 17. Usually I'm on it for a year or two, then I go off it for several years. I've heard this medication can do good things for some people, and by the looks of the responses this is true. In one and a half months time if my new dose (started a month ago) doesn't show any effect at keeping Crohn's under control my G.I. specialist is going to do some metabolite tests to see if my liver is properly handling the medication (FINALLY!). Generally I notice no effect from this medication. Since I've recently fallen prey to clinical depression the appetite supression from the Zoloft and Purenithol have conspired to make me feel sick. I will probably go off of this med regardless of how the metabolite tests turn out. M 34 1 years 2/23/2006
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 5  UC It might be causing male infertility. I have had UC for 13 years. I was going on Prednesone every 6-12 months for flare-ups before I started taking Purinethol. I have not come close to needing it in the 3 years I've been on Purinethol. M 37 3 years 2/22/2006
 5  crohns none diagnosed at at 13.was taking prednisone did not help.had colectomy when i was 16.went in remission for 1 year before it came back.went back on prednisone again with no affect.started taking purinethol when i was 19 within a year i was feeling better,that was 11 years ago and been healthy since.i truly think purinethol saved my life. M 30 1 years 1/28/2006
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 5  Crohns Little to no side effects- some very small liver spots on the inside of my hands, that's all. I have been on various levels of 6MP(purinethol) for almost 2 years. It is my miracle drug. I had symptoms for about two years before they took a biopsy and pin pointed my condition as Crohn's. Ever since I have had no major flare ups. F 19 2 years 1/27/2006
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 2  Arthritis Fast Pulse the first time i took it i felt greate the secont and third it no longer worked.so they are going to up the dose and hopefully it will work F 22 8 days 12/21/2005
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 2  Crohn's Disease Nausea, very tired I've been on this drug for about 3 months and just in the past week have been very nauseous. I'm not sure if I should continue with this medication, F 24 3 months 11/17/2005
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 2  Crohn's At first nothing...then after about 4 months, I started bruising for no reason, horrible flu like symptoms. I couldn't stand up for more that a few minutes before I started gagging and throwing up. Massive fatigue. Couldn't concentrate at work (and care for my 3 month old which is so frustrating). Anemia. Rappid heart rate. I also noticed red dots on my feet and itching, which I didn't attribute to the 6MP-but saw that many others had this same side effect. Brief History: Found out I had Crohn's when I was 6 months pg (June of 2005). Had two surgies during my pregnancy. Had peritonitis and removed my appendix, gall bladder and had a colon resection. Then they needed to restich my colon. Baby was born early but is doing great! Have been on prednisone (started at 80mg finally down to 2.5 mg!!), pentasa (250mg 16 pills a day), and 6-MP for 4 months. The bruising really concerned my dr so after 4 mos. he ordered me to go off the 6MP cold turkey. Today is my first day off it. I'm sure it will take longer to feel better. While I hate the side effects, I hope the Crohn's stays somewhat under control. I'm not sure the role 6MP was playing on my journey to remission F 26 4 months 11/11/2005
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 3  Chron's Gain of weight, stomach bloaded all the time and face, extremely tired, depression, irritable, low white cells, liver problems, feal like space out all the time in another world, no myself My doctor is in the process of doing some more test. if you feal very tired go see your doctor, he send me for blood test as result low white cell and liver problems. He than ask me if i was using injections...Ah i was so made. the only drugs im taking are the ones he prescibes. Will they please found a cure.. i cant take it anymore F 21 3 years 11/10/2005
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 3  UC headaches,nausea,fatiuge and join pain still having UC issues. does not seem to be working well for me. I want to try something else. F 38 10 months 11/7/2005
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 4  crohns disease enlarged liver F 57 90 days 11/6/2005
 4  Crohn's Disease I am not sure but I think some of my short term memory loss and a few skin rashes and early aging spots can be attributed to purinethol Crohn's has been managable for the most part.. even though in 93 I had a major set back. I am taking 25 mg just a few times a week now to try and regain the short term memory loss and to see if a liver problem will subside. Other then that Doctor G in Scottsdale, Phoenix area got me on this back in 87, I been on it ever since.. No real complaints until the past couple years. if you need to email me just take out the nospam M 52 18 years 10/19/2005
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 1  ulcerative colitis suffered total shut down of immune system..fluid in the lungs, enlarged spleen, and pancreitis. Only took the drug for about 11 weeks. M 19 11 days 10/12/2005
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 2  Crohn's Terrible taste in my mouth, so bitter I sometimes can't get rid of it eating sweets. Doctor told me to stop taking Purinethol after 10 days. M 10 days 10/10/2005
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 2  Crohn's Terrible taste in my mouth, so bitter I sometimes can't get rid of it eating sweets. Doctor told me to stop taking Purinethol after 10 days. M 39 10 days 10/10/2005
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 1  crohn's nausea, abdominal pain, itching, general feeling of being sick, very tired I only took 6 mp for 3 days when the fatigue set in. Two days later the nausea and other side effects showed up. My doc wanted me to stay on the treatment but could not guarantee the symptoms would subside. I felt worse on the 6 mp than without it, so I quit after 8 days. I'm hoping the side effects wear off quickly. M 49 8 days 9/29/2005
 4  Crohn's disease none I've been on a combination of 6MP & Asacol for over 10 years. Previously I had been on Predinone when severely flared up. The 6MP & Asacol was a huge improvement. No real side effects to speak of and a healthy weight gain once it started helping. I still flare-up to some degree from time to time but have had success with the antibiotic Cipro which usually helps if I use it for a week or two. I believe 6MP has helped me treat my Crohn's along with careful diet and exercise. M 40 10 years 9/28/2005
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 3  Chron's Disease Itchy red bumps on my chest and weight gain I also take Asacol, 12 daily. Hard to say what's causing the rash, didn't have it until I started with the 6mp. F 37 6 days 9/27/2005
 3  Ulcerative Colitis Very tired, hair loss I have only been on it for 3 weeks, I feel I am getting more and more tired. I can live with the hair loss because I have soo much hair, however trying to function on a day to day basis is becoming too difficult. F 29 3 weeks 9/22/2005
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 5  Crohns disease I have had Crohns for 25 years and finally ended up having surgery. I'm now on 75 mg/day of purenithol. I have noticed some hair loss (but I'm 40 years old), and recently have been having lots of ringing in my ears. But, my Crohn's has been in near total remission. It's the best drug I've ever used for Crohns and I've tried just about all of them (not remicade). M 40 3 years 9/19/2005
 5  Crohn's Not sure. Fatigue could be from the 6MP, but could just as easily be from my not drinking enough water every day. Other than that, nothing. Had pretty bad Crohn's in my early-20s which Asacol and Pentasa failed to control. In January 2000 was completely obstructed and had laparoscopic ileocolic resection to fix. Was put on a mix of 6MP and Pentasa afterward, but had bad acne flareups, so stopped the Pentasa after about 3 months. Since then, 5+ years going strong and no symptoms of the Crohn's to speak of. Blood tests have all been normal, as have my colonoscopies. Been taking 50mg once daily the entire time. No known side-effects so far, and I do like to have a glass of wine or two with dinner a few nights a week. M 28 5 years 8/31/2005
 5  UC/Crohn's well, ive been on it nearly all my life, so i dont really remember (sorry). first off, ive had Crohn's since i was in 4th grade, so i guess ive had it for almost 11 years (19 yrs. old now). i argued that purinethol does nothing (for me), but ever since i was raised to 150mg its actually helped. i was up to over 80mg of prednisone (talk about side effects, and when you were in Jr. High at the time? jesus.) and the 100mg of purinethol did absolutely nothing. ever since the up in dosage, ive been off prednisone for years. prednisone destroyed the joints in my knees and hips (8 surgeries on my knees since 5th grade), and purinethol didnt help any of that but it did semi-save my soccer career. currently i play collegiate soccer and while in high school, undergoing constant terrible flair-ups before the raise in 6MP, i maintained a 3.2 GPA, defensive player of the year in soccer, and got an academic and athletic scholarship for college. anyone that says purinethol doesnt work can look at my situation. M 19 10 years 8/17/2005
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 5  crohns I've had no side effects at all I've had crohns for over 30 years, been on Prendisone several times,with all of the side effects, had 2 surgeries & several bowel obstructions. Between the Remicade for about 3 years & the purinethol for about 5 years, I've been able to cut down on the other drugs I take for the Crohns. F 58 5 years 8/4/2005
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 4  Chrone's Disease Slight fatigue, nauseous I was absolutely petrified to start taking this drug due to all the potential side effects and more importantly the controversy over whether it is safe to take while pregnant (although not currently pregnant, it is definitely in my near future -knock on wood). My Chrone's was fairly inactive up until 2 months ago when I was hospitalized with a severe abscess. I luckily avoided surgery and the abscess was treated antibiotically. To prevent this from happening again, my Dr's placed my on 1500 mgs of Cipro (to heal this infection temporarily), 3000 mg of Pentasa and 50mg of 6mp a day. I hesitated to start taking the 6mp for about a month as I was too scared based on what I have read about it. After many consultations with top obgyn dr's and gastro specialists, they advised me it was in my best interest to begin this drug and they would stop it immediately if any of the side effects became unbareable. Needless to say, I am feeling great (better than ever) and have had minimal side effects. In addition, my obgyn follows 6mp/pregnancy very carefully and said much of the new research in the last few months is very positive in respect to this issue. I will definitely cross that bridge when necessary BUT...with MUCH hesitation i started this drug and have to say, It has proven my inhabitions wrong. If anyone has any feedback regarding pregnancy and this drug, I would love to hear about it. F 28 2 months 8/1/2005
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 4  UC Nausea, headache, achy, fever chills my joints hurt F 46 3 weeks 6/12/2005
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 5  Crohns No side effects excect dip in white cell count while i weaned off of prednisone. I've been taking 100 MG of 6MP for almost a year and it is working well for me. I was very sick before I started taking 6MP and could no longer tolerate steroids. I'm very happy with the results. I have not flared up at all since being on this dose. I have to have a iguinal hernia repaired and am a bit worried about healing time as i was told the 6MP will impede the healing process. Has anyone experienced this? F 39 1 years 6/7/2005
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 5  Crohn's i've been very tired and have achy joints but i'm not sure if it's b/c of the crohn's or the medication. my immune system is also lower i was diagnosed with crohn's in Sept. 2003 and i was on the prednisone and asacol at one point and when i started purinethol i slowly got off of the prednisone (which was great cuz it got rid of that whole 'moon face' thing). one of the most important things is to work closely with your doctor so you can have the required blood test. also i am on ferrous for iron since i'm anemic. but other than the sleepiness it has worked wonders. i've only had like 2 flare ups and i'm positive that was from stress. F 21 1 years 5/21/2005
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 1  Crohn's Acne, rash under arms and inside of thighs, dry scalp, red spots on back and shoulders I had a flare up after being in remission for a year while taking only Asacol. My doctor told me we'd have to take a more aggressive approach and prescribed me 6mp. After being on it a month I started noticing the side effects. My doctor told me to stop taking the 6mp and prescribed me Imuran, which I just started taking. Hopefully I'll see better results with the Imuran M 24 2 months 5/17/2005
 5  Ulcerative Colitis Nausea at first, but that disappeared after about 2 weeks. Purinethol has worked really well for me, and I have no side effects. I'm in complete remission, and I'd never even know I had UC. Before taking purinethol, I was on Colazal and high doses of prednisone, which had unfortunate side effects for me. Once I started purinethol, I was able to eliminate the steroids for the first time. I've been steroid-free for almost 9 months after having been dependent on them for a year. Also, purinethol is tasteless and is very easy to take (just 1.5 small pills per day). The blood tests are no big deal. I hope purinethol continues to work for me forever--I'm a huge fan. F 21 1 years 4/25/2005
 3  Crohn's Liver and kidney started to shut down. My 20 year old Daughter had the problem with the Purinethol. Both of my daughters have Crohn's. One diagnosed @ 20years in her 30 week of pregnancy, her organs also started to shut down. Delivered my granddaughter 10 weeks early, hospital stay for her 8 weeks (she is fine now) and my daughter was in the hospital 4 weeks. No warning of the disease until then. My other daughter was diagnosed @16 years old. The 6mp seemed to be working well for her, weekly blood work, after a few months of taking it her eye color appeared to be on the yellow side in less than 24 hours her liver and kidneys were shutting down. She was hospitalized for 1 week. Went off the 6mp doing fine now. Told this side effect is so rare there are very few causes in the US. Both of my daughters have been on numerous medication for Crohn's and are both good at watching what they eat to help control the disease as well as the med's they are on. I also have MS which is also in the autoimmune disease family. F 20 4 days 4/1/2005
 2  Ulcerative Colitis I have not started taking it yet, still researching to see if it is worth it I was diagnosed with ulcerative colitis almost 5 months ago; since then I have been hospitalized twice due to falre-ups. I was on 80mg of prednisone, and 400 mg of asacol 12x's a day. Now I am on 50 mg prednisone and 400mg colozal 9x's a day and my doctor wants to start me on purinethol as a mantainace therapy. I have heard horror stories about the drug and even things about infertility. If anyone has any information to help my decision or about the infertility, please share with me. ealive01@louisville.edu F 19 0 days 3/30/2005
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 3  Crohn's Disease Nausea, periodic fatigue F 56 2 years 3/16/2005

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