| 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. |
| Rating | Reason | Side Effects | Comments | Sex | Age | Time Taken and Dosage | Date Added | |
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| 4 | arthritis | I HAD BEEN TAKIN REMACADE FOR AROUND A YEAR AND I HAD MY TREATMENT ABOUT 2 WEEKS AGO. I RAN INTO PROBLEMS. MY HEART STARTED BEATING IRREGULAR AND I THOUGHT I WAS GOING TO PASS OUT. IT HAPPENED ABOUT 10 MIN, AFTER I WAS OUT OF THE HOSPITAL. IT WAS A HORRIBLE FEELING. I DO NOT KNOW IF I CAN TAKE IT ANYMORE DUE TO HAVING HEART PROBLEMS. THEY ARE CHECKING ON IT FOR ME, | M | 70 | 2 years | 9/27/2003 | 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 | 2 | Chrone's | Chills, sore stomach | F | 68 | 2 days | 7/24/2004 | 4 | auto immune hepatitis | none that I know of...I was also taking prednisone for 4 months.. I had some effects, that I presume were mostly from the prednisone, such as fat face...but I was able to lose some weight... | F | 65 | 4 days | 3/16/2004 | 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 | 1 | Crohns | flu symptoms; aches,pains,chills,fever,vomiting,passing out,loss of muscle condition. Complete allergic re-action, after only one 100 mg. pill. Six weeks to recover, took another pill....exactly the same reactions only worse. | F | 63 | 1 days | 6/3/2003 | 1 | Chrons | After two weeks got extremly high fever, and ended up in the emergency room, and three days in the hospital. Dr. suspected drug from the beginning even though it appeared I had a raging infection. | F | 61 | 15 days | 11/19/2002 | 5 | uc from stem to stern as described | none @ 75mg per day | absolute complete control of uc symptoms after failure of prednisone to effect any remission unless I continued to take the prednisone. I am also down to 400 mg of asacol and soon to taper off of that one pill and have no doubt I will be off of it. | M | 59 | 1 years | 5/10/2004 | 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 | 3 | crohns disease | with an increase in doasgae I had dangerously low blood counts which put me at hig risk for heart attack and stoke, heart palipitations, dizziness, weakness, shortness of breath | 50 mg for 5 years, then increased to 75 mg due to development of fistula and increased again to 100mg while starting remicade. My doctor called and wanted me to go back down to 75 mg due to very low white and red blood cell counts. Five days later I was in the ER with heart palpiaitations and shortness of breath and a blood cell count that seemed impossibly low. By the end of the week I was in the hospital getting 4 units of blood and my bone marrow had shut down. | F | 58 | 6 years | 9/12/2004 | 5 | Ulcerative Colitis | Have had colitis since I quit smoking 12 years ago. Tried Sulfasalizine, Prednisone (up to 60 mg), enemas, you name it. Nothing worked for more than a few days. Then the doc suggested Purinethol, 100mg. It work OVERNIGHT! I realize it isn't supposed to work that fast but it did in my case. Absolutely no symptoms at all for the last two years. I forget I even have the disease! Amazing! | M | 57 | 2 years | 12/26/2003 | 5 | CROHNS | NONE | Diagnosed @ age 35 with crohn's. After suffering for 17 years with fitulas and fisures and taking prednisone and asacol I got so bad that I had 2 courses of Remicade then bowel resection. I started taking 50 mg of purinethol daily about 5 years ago. I have been totally synpton free since. I only know I have Crohn's because I have to have my blood tests while on the drug. I have not been on any other drugs since. | F | 57 | 5 years | 10/3/2003 | 5 | ulcerative colitis | Very few side effects. More bruising this past year than previously. | I've had ulcerative colitis for 20 years. The only times I've been in remission were when I was going through a very difficult divorce and when I went through chemo for breast cancer. In discussions about this with me doctor we decided to try Purinethol @50mg/day. It's worked wonders. I can eat most foods, feel very good, lots of energy. The only flare ups I've had were when I had the flu 2 years ago. I also take 400 mg of Asacol three times a day and biotin to help remedy hair loss. | F | 57 | 3 years | 7/5/2003 | 5 | Crohn's | I didn't have any side effects. | I have had Crohn's for almost 30 years. After having three resections, as well as the normal course of prednisone horrors. I was the first person to get Remicade at our hospital, and it worked quite well. Took 6mp for several years and felt so good that I asked to be taken off the drug. Now I am considering going back on it. I never want to take prednisone again and hope that I can catch a remission again. | F | 57 | 3 years | 10/4/2002 | 4 | crohns disease | enlarged liver | F | 57 | 90 days | 11/6/2005 | 2 | for ulcerative colitis | After 2 weeks my amylase was slightly elevated. After 3 weeks it was elevated more, accompanied by nausea, vomiting, fever and abdominal pain. The fever and the pain stopped the day after I stopped taking the drug. The first four days on the drug I felt better and thought it was the answer to my problem. I was diagnosed with UC June 2003, but probably had it in 2002, but did not go to a doctor and have it diagnosed. | F | 57 | 21 days | 10/30/2003 | 5 | Crohn's | No side effects | I was diagnosed with Crohns when I was in my mid twenties - I am now 56. I first started taking Purinethol about 1985 and have been on it ever since. Crohn's is in remission and I have no immune nor weight problems. Once, I stopped taking the drug (without my Doctor's permission) for about two months and the Crohn's came back. He explained that it takes about two months for the drug to flush through my system. | F | 56 | 17 years | 10/25/2002 | 5 | ulcerative colitis | None except maybe strong hunger | Flare up after 5 yrs on Sulfasalizine. Went all the way up to 60 mg of Prednizone and still no help with colitis. Added 50mg of Purinethol and voila, colitis stopped. THis is a wonder drug for me. I am now down to 30 mg of Prednizone, tapering off 5 mg per week, up to 100 mg of Purinethol. Can't wait to get rid of Prednizone. | M | 56 | 5 weeks | 11/11/2002 | 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 | 3 | Crohn's Disease | Nausea, periodic fatigue | F | 56 | 2 years | 3/16/2005 | 5 | uc | None | This was like a miracle drug for putting my UC into remission. WAs anemic while taking this( maybe coincidence) but a few shots of procrit and daily iron pill s took car of that. | M | 55 | 4 months | 4/9/2003 | 5 | Ulcerative Colitis | The only side effects I have noticed are some small rashes that disappeared after using topical cortisone, joint pain and possible weight gain. The weight gain may be due to increased appetite after losing weight from the flare up that I had for six months. It's amazing that I take 1 and 1/2 pills every morning instead of 3 asacol, predisone and flagyl. I keep waiting for a flare-up. This seems to work for me, at least for now. | I really would like to know more about this drug. My only concern is that it is a strong medicine given to cancer patients. I trust my doctor completely, I just like to educate myself. | F | 55 | 3.5 days | 10/15/2003 | 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 | Ulcerative colitis | Extreme chronic fatigue, dehydration with frequent urination (dry mouth and dry eye syndrome), very susceptible to illnesses and infections, leg cramps, general achiness, normal illnesses last much longer, frequent mouth/gum infections, more difficult to lose weight. | While Purinethol seems to have helped versus other meds I was taking, I still had major flare-ups while on it. It wasn't until I changed my diet that I started to see real results and healing. Yes, diet DOES matter!!!! Keep away from all starches, sugars, grains, etc. and you will heal! Please research the | F | 55 | 7 years | 1/16/2004 | 5 | chrones disease | I have taken this for 12 years and have had none except easier to bruise. My last 2 scopes have shown no sign of the disease or infections. | While anyone taking medicine for long term has to worry about unknown side effects, I have observed none. I drink alcohol in very moderate amounts ( never more than one beer or mixed drink)and have seen no problems with it. | M | 54 | 12 years | 12/29/2003 | 5 | UC | A little tiredness initially but not so bad now | I have had UC for 10 years after stopping smoking. Initially I was not sure about this drug but since being on the Purinethol I have not had any major flare ups and must say that it is controlling my UC well. I did notice some tiredness at first but that has either reduced over time or maybe I simply got used to it, Either way I manage to work play and run a few miles a week. I'm fine feeling a little tired if the alternative is cramping pains weight loss and spending half my life either in or seeking a bathroom! | M | 54 | 2 years 75 1X D | 3/21/2010 | 3 | UC | I haven't noticed any side effects at this time but I am still on prednisone, 5mg per day. With the prednisone I have broken out with acne, have gained weight, mood swings and always hot. | I am taking 50mg of Purinethol, 1600mg of Asacol, and 5mg of prednisone. I have been on Purinethol for two mouths now and my Doctor is taking me off the Prednisone slowly. I have suffered with UC since 1998 but never hospitalized for it. At first the Asacol was keeping the UC under control but then things got out of control and my Doctor put me on Prednisone. This last flare-up Prednisone didn't help at all so that is why I am on Purinethrol. I also take the flu shot every year. | M | 54 | 2 months | 5/5/2004 | 3 | Ulcerative colitis | Constantly getting bad chest colds and flu-type illnesses, tired all the time, achy, very prone to infections especially in the mouth and gum areas, mouth and eyes always dry, always seem to not be feeling well and catch illnesses from others very easily. | I started a special diet to help alleviate UC symptoms after a major flare-up 6 months ago. The diet has helped tremendously. It basically eliminates all starches, grains, breads, flour, sugars. I am very concerned about having been on this drug for so long (6 + years) but my doctor wants me to not only stay on it but to increase my dosage from 100 mg. /day to 150! I refused to increase the dosage and went on this diet instead! It has really helped! If anyone is interested it is called the Specific Carbohydrate Diet. | F | 54 | 6 years | 7/21/2003 | 1 | Crohn's Disease | Nausea, brain fog, fatigue. At 12 weeks I got shingles. | I was on 6-MP for 18 weeks. It had clearly suppressed my immune system as I came down with shingles which I've never had before. As I reduced my prednisone it was clear it wasn't working as all my Crohn's symptoms came back. As soon as I stopped the 6-MP the brain fog lifted. I'm now on low dose naltrexone which has been really effective with few side effects - the best Crohn's med I've taken | F | 54 | 18 weeks 50mg 1X D | 5/5/2010 | 5 | Ulcerative Colitis | I have been taking 100MG of Purinethol a day for over 7 years and have remained virtually disease free. | M | 53 | 7 years | 7/7/2002 | 1 | ulcerative colitis | Acute anemia | This is a dangerous drug which can kill you. It is an immuno-suppressant, a form of chemo for leukemia and you must be monitored for anemia. If you get an infection while on it, you have a better than 50% chance of succumbing to the infection. I am writing for my wife who was on this poison for over 3 months in 1999 and almost died. | F | 53 | 3 months | 7/9/2002 | 5 | ulcerative colitis | The last 4 years I've had skin cancer; I also have genetic/environment risks however I have had several squamous that required some reconstructive surgery. I have other skin problems as well. Exercise is a must however the body sometimes just can't do it, never in the morning but I think that is part of the illness. I have real difficulty with acension work. I've had a heart stress test and was told the heart was fine however I was dehydrated, I couldn't completely finish the test because I almost fainted. I'm thinking it had more to do with the medication and its impact on anemia readings in the blood work. | I was steroid dependent when I started taking purinethol and it took 1 1/2 years to transition. I have had periodic breakthru bleeding over the years however my current dose plus 3 Lialda a day usually will hold me. I used to think I could stop the purinethol however it takes me months to get the bleeding to stop and my UC under control, even with steriods. I am religious about keeping up with the required blood work monitoring. I rarely get a cold or flu virus so I think I am at the right dose on this medication, keeping my immune system from overreacting. I used to have severe allergies. I do bruise easier and sometimes with the skin cancer work I don't clot quickly so they cauterize. I still have periodic joint pain and redness in my elbows. Severe right sided pain flares still occur a couple times of year. For me, as much as I dislike the side effects, this drug has allowed me to keep my large intestines and am cancer free (my grandfather died of colon cancer). | F | 52 | 17 years 75 mg 1X D | 4/27/2010 | 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 | 4 | Ulcerative Colitis | Fatigue, aches in muscles and tendons. | I just got off of Prednisone after being on it off and mostly on for 2 and 1/2 years. I take 75 mg X 2 daily of Purinethol, along with 9 Colazal capsules, ea. @ 750 mg daily, for the last two and 1/2 years. They both probably contribute to my fatigue and aches. I am doing the best ever since I was diagnosed with UC 4 years ago. The fatigue is the worst since I quit Prednisone, but I have recently started vitamins, and feel much, much better. Do the vitamins, people!! I also quit coffee (DUH!) about 6 weeks ago, and my cramping and bleeding are almost gone! I should have done that a long time ago, but my Physician, who knew I was a coffee drinker, didn't even raise an eybrow about that. BTW, I feel that beef bothers me, did anyone else notice that? | M | 52 | 2 years | 4/26/2004 | 4 | Ulcerative Colitis | Some hair loss (but at 50+ years old I was already down that road). Chronic fatigue and major joint pain, but I'm not sure those are totally caused by the Pureinthol. The UC probably also contributes. Colds last longer than they did before. | I was diagnosed with UC in late 2001. After two previous attempts to get off Pred during 2002 it was Pureinthol that allowed me to do it on the third try during Jan. 2003. I've been taking 75 mgs a day since. I'm also taking 2400 mgs a day (originally 4800 mgs) of Asacol since my UC diagnosis. The Asacol helps, but it is the Pureinthol that allowed me to get off Pred and lets me function on a daily basis. It's not perfect, but I'm grateful that my side effects are not severe and it keeps my UC pretty well in check. My Dr. gives me OK to drink alcohol moderately; a glass of wine or a beer a day if I desire. The Dr. also monitors me with CBC blood tests every 3 months. The thought of possible side effects from long term usage give me pause, but can they be worse than the absolute hell that UC had me in, I don't know. Feeling pretty good I got overconfident and correspondingly sloppy with my Pureinthol intake during summer 2003 and my UC symptoms came roaring back with a vengeance. Some Pred and getting back to consistent dosing with the Pureinthol got me taken care of. Without good health insurance it is expensive. I'm fortunate to pay only a fraction of the what without insurance would be about $180 for my monthly dosage. Higher dosages than the 75 mgs a day I'm taking would obviously cost even more. Some good news on the cost issue is that Par Pharmaceuticals was just given FDA approval (Feb. 2004) to start selling a Pureinthol generic. Mercaptopurine is the actual drug name for the Pureinthol brand name (see www.parpharm.com and click Press Releases). | M | 52 | 14 months | 3/4/2004 | 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 | 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 | 1 | Crohn's | High fever, trouble breathing and severe flu symptoms | I must be one of the few that cannot tolerate the drug. The MD tried me on the drug with the above results and then again at a lower dosage with the same results. | M | 52 | | 12/13/2004 | 4 | Crohn's disease | Body ache, hair loss | F | 51 | 300 days | 12/1/2003 | 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 | Crohn's Disease | Diagnosed with Crohn's when I was 39 years old. Was on Prednisone, Pentasa and Asacol at various times. I only got relief when I was taking over 30mg of Prednisone. The doctor finally tried me on Purinethol and it took several months to kick in. Crohn's is pretty good, but I also found that my allergies disappeared. This was an unexpected surprise and almost better than its help with the Crohn's. | M | 50 | 6.5 years | 6/1/2004 | 3 | Crohns/Colitis | I do know I am losing hair daily and can not sleep. Tho, this could be partially to blame on the Prednisone and Asacol and other 13 meds I take daily. | I've been on 6mp for about 5 yrs now. I just recently, in July, went from 75mg daily to 100mg daily. All of a sudden my Liver Profile is out of whack. I'm in dangerous levels and taking me off the 6mp for 4 weeks started bringing down my ALT and AST. However this last Liver Profile shows that tho my ALT is still coming down slowly, the AST is beginning to rise again. One of my doctors says my Liver is probably 70% gone. My Crohns/Colitis is in check right now, but at the cost of my Liver. | F | 50 | 5 years | 9/20/2002 | 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 disease | Fatigue, memory problems, hair loss but it grows back | Have had Crohn's for 31 years. Other meds did not work as well. Not sure if I want to risk having a Crohn's flare to try to stop the 6MP and see if my fatigue lessens. | F | 49 | 4 years 75 mg 1X D | 3/7/2010 | 3 | Crohn's | Hair Loss & Nausea | I want to know if the hair loss eventually stops? | F | 49 | 1 months | 8/31/2007 | 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 | 5 | Crohn's Disease | No side effects..maybe some fatigue but I think that's normal for my age and activity level. | Purinethol is a miracle drug for me. I suffered for 15 years before a wonderful doctor in Arizona prescribed MP6. It took several months of ramping the dosage to start working. I have not had any symptoms for 10+ years. I had 15 years of hell before taking purinethol. I had multiple surgeries,resections,fistulas..all of the worst symptoms before taking this drug. My present activities include weightlifting,running golf..totally normal life..and yes I even have a couple of beers on the weekend. I've even lost about 40 pounds from my peak weight.All of my bloodwork to date has been as my doctor puts it | M | 47 | 10 years | 3/31/2004 | 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 | 4 | uc | very dry mouth.ringing in ears.weight loss 45 lbs. | been on purinethol for 10 month.could not take any of thre other drugs.was very sick for 5 months.it has worked we'll for me.but im afraid of side effects that no one wants to talk about.i have 3 dr's.they all want me to stay on it. | F | 47 | 5 months | 3/20/2004 | 2 | uc | rash, tired, change of bowel habits (worse than just UC symptoms) | I don't want to give up, but it's been over a year and it's doing nothing. | F | 47 | 1 years | 5/8/2003 | 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 | 4 | Crohn's Disease | Fatigue, low blood cell count, weakened immune system | This drug is a mixed blessing. Yes, it helps control my Crohn's Disease, but it also has some undesirable side effects. I was on 50mg per day, which isn't too bad. Also, it can be very expensive unless covered by an insurance plan. By far, Remicade is more effective but is also much more expensive. I'm hoping that some of the recent breakthroughs, such as Humira, will soon become my silver bullet. | M | 46 | 5 years | 6/11/2004 | 4 | UC | Nausea, headache, achy, fever chills | my joints hurt | F | 46 | 3 weeks | 6/12/2005 | 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 | 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 | 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 | UC | Very tired, weight gain- inability to lose weight, hair loss-I'm used to a head of thick wonderful hair and it's thin now | This drug helps my UC but side effects are very frustrating. | F | 44 | 2 months | 1/2/2004 | 3 | for ulcerated colitis | hot flashes, dry mouth and extreme exhausation | i have been suffering for 3 yeARS have been hospitalized twice finally after months and months of steriod use doctor put me on 6mp 100mg took about 6 months to see some differnce still have flare-ups but have been off steriods for 6 months and lost 40lbs | M | 44 | 1 years | 5/8/2004 | 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 | Possible muscle weakness and joint pain. | I was first diagnosed with Chron's disease when I was about 19 years old; however, I had symptoms since I was 13. In those | M | 44 | 1 months | 7/13/2003 | 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 | 5 | Crohn's | No side effects so far. | Feeling much better | F | 43 | 4 months | 9/13/2002 | 5 | Purenithol | Have had no real side effects and have been on 75mg a day except for the fact that I am getting to be more easily aggravated the longer I am on it. I have been on it for a little more than 10 years. Am very happy with the results. The work for me. I just have to watch what I can eat and don't eat but that is the Crohn's. | M | 43 | 10 years | 5/2/2004 | 5 | Crohn's Disease | None | Been on this for 6 years, first at 75mg then at 100mg daily. Has worked fine and has allowed me to get off Prednisone finally. I found that the use of Budesonide was very useful in the actual termination of the Prednisone. That's the new designer version of prednisone that concentrates its effects in your bowel area. The only problem I had recently was when I cut my dose back down to 75mg and had a flareup which caused me to be hospitalized recently. I'll stay at 100mg in the future. I do have to use a lot of Pentasa (14/day) but I find that the use of Multivitamins, folic acid, and Vitamin E capsules mitigate the fatigue side-effects of it. | M | 43 | 6 years | 10/2/2004 | 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 | 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 | 4 | crohn's | Occasional dizzy medicated feeling. Tired at times, with some ringing of the ears. | I was introduced to this drug after Asacol and Prednisone had little or no effect on flares. I have been flare free for 4 months now. It took a couple of months to reach full remmision. Currently taking 50MG daily along with 2400MG of Asacol and folic acid. Blood is drawn monthly to watch the white count. A small price to pay for being normal. The only reason I did not rate it as 5 is due to the side effects of tiredness and the medicated or dizzy feeling I occasionly have. | M | 43 | 6 months | 10/22/2003 | 4 | chrons | very very tired low blood lost weight | it helped my chrons but i can not continue to take it because of how weak and tired it makes me feel when i work 40 hrs a week. so right now the choice of taking the drug or not taking it has to do with the side effects and while working i can not handle it. | F | 43 | 3 months | 9/12/2003 | 4 | chrons | very very tired low blood lost weight | it helped my chrons but i can not continue to take it because of how weak and tired it makes me feel when i work 40 hrs a week. so right now the choice of taking the drug or not taking it has to do with the side effects and while working i can not handle it. | F | 43 | 3 months | 9/12/2003 | 4 | crohn's | my seasonal allergies or possibly a cold flared up. I had a cough that took weeks to get rid of. | F | 43 | 8 weeks | 8/30/2003 | 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 | 3 | crohn's | Many side effects. Massive energy loss. There are periods of time where I can literally not move. They are incredibly scarry. During them, I seem to drift in and out of consciousness. Prior to purinethol, on a good day I could bike for 30+ miles. I would be happy with half that now. Slow but steady hair loss. No one in my family has a receding hair line. I did not prior to purinethol. Red dots all over my body. Weight gain. I expect that is due to an appetite loss which encourages me to eat more junk I like and less food that is good for me (common with chemo). My doctor said two years ago it's my last chance so I guess still being here is better than other options, but I'm not sure. I am a vp in my company and the fatigue is killing me at work. I am more absent minded and have lost most of my sharpness. My liver functions have deteriorated. Joint pain goes from moderate to unbearable. I was always active in sports including football and basketball. The last few years have taught me I knew nothing about pain. | The worst thing for me with this med was I was not told that this was chemo for cancer patients until I picked up the first prescription and saw the warnings. I have faith in my doctor, but it worries me that he minimizes the dangers. About six months on the med, I felt like a new person. Then the bottom fell out. My wife was diagnosed with cancer at the time so I assumed that I was having a rough time dealing with the extra physical effort of keeping the house going while she went through chemo, surgery etc. When things continued to get worse they realized that there had been a lowering of my liver performance. The only good I can say is I am still here and the medicine seems to have stopped the really lowest points with the crohn's. It's a huge trade-off. | M | 43 | 26 months | 4/2/2004 | 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 | 5 | Ulcerative Colitis | Chronic fatigue, loss of appetite (have lost pretty much all excess body weight) Morning nausea- gagging but has made the UC a non issue in exchange. | M | 42 | 7 months | 1/28/2004 | 5 | Autoimmune Hepatitis | none | F | 42 | 4 months | 9/15/2002 | 5 | ulcerative colitis | none | F | 42 | 4 years | 2/16/2005 | 5 | ulcerative colitis | can't lose weight | No other side effects, I was amazed at the results and no real side effects other than weight loss issues, which could be something else. Wish I'd been put on it sooner, my mother is on it now for the same thing. HATED prednisone, so this is a REAL life saver! Taking it x 9 months | F | 42 | | 9/22/2003 | 5 | Cr0hn's Disease | Have been taking this orally for almost a year, after two infusions, and this is the best I've felt in 20 years. Lost over 25 pounds, more energy! | F | 42 | 350 days | 8/2/2002 | 4 | Ulcerative colitis | Possible sensitve mouth. Nothing else so far but am taking prednisone and asacol also. Will know more when I'm off the prednisone. | Combination of 3 blood transfusions, 12 day hospital stay, prednisone, asacol and purinethol and I have my life back again. | F | 42 | 24 days | 1/31/2003 | 1 | UC | None cause I wouldn't take it. | Had UC 10yrs ago and was hours away from surgery. Predisone worked and I went home. Did alternative medicine after and was in remission for 10 yrs. Slacked off and got UC again. Hospitalized for 6 days and went home on Predisone and Asacol. Started Alternative medicine with Dr. BOb Marshall, www.healthline.cc,. After a month and half am On 7mg of predisone and a few tablets of Asacol. My regualar doctor wants me to take Purinethol. Hey! I would rather do the food 4 your blood type diet, no white sugar, white flour, no coffee ect. I went to a UC support group and most of the people wouldn't change there diet and wasn't interested in my success with alternative meds. One guy was a junk food juckie. He had twinkies in his briefcase. Yoga is great and getting a handle on what is emotionally going on DOES HELP!! Hey I'll do anything and pay out of my pocket for ALt Med then get surgery on be on this drug. ALT med is about $100.00 a week cost. | F | 42 | 0 days | 6/27/2003 | 1 | Chrohn's Disease | fever, swollen ankles, rash, severe diarhrea | My doctor decided to try me on Purinethol after trying 2 treatments of Remicade that didn't work. The worst part is he also wanted me to try Clarithromycin at the same time. The side effects I'm having point to the 6mp, but now I have to stop taking that and the clarithromycin. Does anybody know why they don't introduce one drug at a time? Who really knows what is helping and what is not? I had to reduce my steroid intake because my lower spine is starting to get osteoporosisbut I'm still on 20 mg of that a day also. | M | 42 | 10 days | 10/29/2002 | 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 | 3 | Liver Disease | Just started this drug and this morning I was alarmed about the hair loss,I get very tired also.Will I go as far as going bald and loosing all my haiR? | I need answers,my Dr's would not discuss the side effects with me. | F | 41 | 1 months | 1/19/2004 | 3 | crohns disease | occassional headaches in the morning. | I was diagnosed w/crohns 21 yrs ago. I had a total colectomy w/ileorectal anastomosis @ age 27. On and off high dosages of prednisone for years. Was in remission from age 30 to current age 41. Recently relapsed and placed on 6mp. Although I never complained about the prednisone therapy, I did not want to go back on the drug unless absolutely necessary. MD wanted to try 6mp. So far in the last month of usage, abdominal pain decreasing, energy level increasing, stress management more tolerable. Unsure if related to the 6mp but hopeful. Accepting the fact that I came out of remission is harder to deal with than any side effect. | F | 41 | 32 days | 8/1/2004 | 2 | crohn's disease | none so far. although i have been taking only for a short time blood work ahs been okay but they just recently increased my dose not sure this is the drug for me | do not like the fact that the doctors who subcribe it do not give all the info on it and the drug stores give the same info as doctors | F | 41 | 3 months | 9/14/2002 | 5 | UC | None | Have been back to normal ever since taking Purinethol! | F | 40 | 3 years | 2/19/2003 | 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 | 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 | 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 | 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 | 4 | Crohn's Disease | Fatigue, but not sure if that was the disease or the drug. | It did not heal a fistula, but did help control the disease itself. | F | 40 | 1.5 years | 6/2/2004 | 3 | UC | fatigue,insomnia and a burning rash-acne under my nostils and around my mouth | A little over a year ago I was on 4800 mgs of Asacol and it wasn't working. I went to get a second opinion and was prescribed 100 mg of purinethol and 2400 mgs of Asacol. It worked wonders for the first 6 months. Now, I have a rash on my face that burns,itches and looks like acne besides going to the bathroom 8 to 15 times a day. 24 days ago I was put on prednisone, the acne completely clared up and I loved the new found energy. 3 days ago I was taken off of the steroid and the rash is back full blown. Does anyone have a suggestion for the rash? | F | 40 | 13 days | 9/19/2004 | 3 | Crohn's | I haven't gotten my period in 34 days. I have been taking Purinethol for only two weeks and I have taken two pregnancy tests that are both negative. | It has helped the crohn's a bit. | F | 40 | 15 days | 1/21/2003 | 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 | 2 | UC | Hot flashes, joint pain, sleepiness, feeling like I have the flu. | F | 40 | 5 days | 2/22/2005 | 1 | Ulcerative Colitis | Acute Pancreatitis 6 hours after taking one dose! | I've had Ulcerative Colitis for over ten years. I've never been able to control it using Asacol or Rowasa. Prednisone treatment would always get a flare-up under control but I would rebound worse each time. My GI suggested I try Azathioprine. After a few days on Azathioprine I woke up in the middle of the night with the worst flu-like symptoms I've ever experienced. Severed muscle and joint pain. I made it through the night and in the morning my Dr. told me I'd had an allergic reation to the medication. About a month later we decided to try Purinethol. I took one pill at 7pm. By 10pm I was having pretty bad stomach cramps. By 12:30am I was litteraly doubled over in pain. I drove myself to the hospital (really stupid). And was admitted with Severe Accute Pancreatitis. | M | 40 | 1 days | 8/9/2003 | 1 | crohn's disease | None, I have not taken the drug yet. | I was diagnosed with Crohn's Disease 5 months ago. However, I am sure I have had the disease for at least four years and maybe even as many as 12 years (despite my efforts to uncover the source of my severe discomfort, I was undiagnosed and may have been misdiagnosed as having endometriosis - none was ever found with laparoscopy. Based on what I am reading, I am very lucky that my disease is being controlled by 400 mg of Asacol (9 times per day). I hope that everyone on 6mp, especially those that are having severe side effects, are aware that there is genetic testing that can and should be done to determine your tolerance for the drug before it is prescribed. I have been tested and can tolerate the drug if needed. I hope this helps. Good health to all. | F | 40 | 0 days | 8/31/2004 | 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 | 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 |
| Key to
ratings: 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. |