Medicine or Not? I’m Wondering About Imuran…

Introduction:

I had 3 colonoscopies with 3 different doctors all under 1 year from 2007 to 2008. 2008 is when I got my uc diagnosis. It was mild and I was on lialda but I took myself off cuz I felt better. Now its moderate to severe.

My Ulcerative Colitis Experience:

I go see my nurse practioner tomorrow to discuss going on Imuran. I eventually want to help my ulcerative colitis through diet but I know that I must get into remission and the way to do that is with the meds. I have done the enemas and lialda in the past, which worked great and that got me into remission. But since I took myself off lialda in late 2010 I have gotten worse.

I’m in a flare that just won’t go away.

This flare started around late september/october 2011. I was having enough symptoms to go to the doctor and have another colonoscopy done. He put me on prednisone and mesalamine enemas, also a pill (but I can’t remember the name). Well the prednisone helped for the first week but I swear I feel worse now than I did. Then the doc put me back on lialda and I get to do a colorcort enema and suppository eveynight. Yay. Not! Nothing is helping and I’m now scared. They want me to try imuran and a part of me thinks that I should so that I can maybe go into remission. But the other part of me is scared of the side effects. Like the fact that its an immunosuppresssnt. Your immune system is not supposed to be suppressed. That will just let in all sorts of illnesses. So I am really torn. Any thoughts, ideas, and/or advice would be much appreciated. I never used to be so leary of medicine but I also have psoriasis on my hands and a few years back the dermatologist reccommened Raptiva which I did. It seemed to be working but 2 1/2 months in I received a letter saying the FDA pulled this stuff from the market because some people in Europe died from a fatal brain disease. Well all my faith in medicine went right out the window. I know that going off Raptiva could make my psoriasis worse which it did do. So to go on something that is neccessary is fine I just want to know what the side effects are not only while I’m on the meds but also if I go off of the meds too. I’m so sick and tired of being sick and tired. Also can’t stand the “looks” that the doctors give me. Oh yeah I almost forgot I heard of this powder supplement called Inflammacore that’s designed for people that suffer with uc. Has anyone heard of the stuff or possibly use it? A friend of mine told me I have to go gluten free too.
Is that something I should do? Will it help with uc? Thanks to everyone for helping me in this journey. I’m trying to not let it get me down but sometimes it just gets the best of me.

written by Tracy

submitted in the Colitis Venting Area

 

 




imuran

20 Responses to Medicine or Not? I’m Wondering About Imuran…

  1. Kelly February 6, 2012 at 8:55 am #

    I have been on Imuran for 2 1/2 years now. They started me on Imuran at the same time as a Prednisone treatment so they could get me out of a flare. I have also been on Asacol, Lialda, the ememas, and am now on Remicade and Imuran. Imuran seemed to help me for quite awhile. I was on Imuran for one year without any flares. I flared after a year of being on the Imuran and that is when my doctor started me on the Remicade/Imuran combo. I have been in remission now for 2 years without a flare. Unfortunately with our disease you can not go off the medication if your colitis is severe. You go off your maintenance medication, and you are going to be right back where you started, maybe even a few steps back, because now your body has built up a tolerance to whatever maintenance medication you were on at the time. Yes there are risks with any medication, however, there are risks with leaving your condition untreated. I have not had any side effects from the Imuran. I do have some with the Remicade, but the side effects from UC largely outnumber the risks of the medication. Good luck with whatever you choose. Let us know how you do.

  2. Jim
    Jim February 6, 2012 at 9:02 am #

    Hey Tracy. So you can check my story out: https://ihaveuc.com/attn-people-feeling-like-uc-haswill-consume-your-life/ but long story short after nothing worked for me i was forced to go on imuran. It was the only thing that allowed me to taper off the prednisone and go into remission. Recently i decided to stop taking it and went into a minor flare, so im now back on it and seeing success once again. The side effects are barely visible. I do notice more dead hairs in my hand than usual when im showering but its really not too much. I do get the sniffles every now and then too, but i stay as healthy as i can by running and making trips to the gym, along with a healthy diet (nothing specific, just fresh foods). My time on imuran has been brief (from august to november then from january to now) but it has been a good experience. The only warning i give is about getting on it. START OFF SMALL (half a pill) I tried to start on a pill a day and was up all night vomiting. Eventually i was able to get to 3 pills a day with no nausea at all but it takes some time. On another not so positive note, imuran is a somewhat dangerous drug (according to my new doctor). Im 23 and he says thats a little young to be on a 3 year plan of it so he wants me to eventually try to get on lialda which was not working for me when i was first diagnosed but this doctor believes when im in remmission it may have a different effect, any opinions on that? When i tried lialda during my first big flare this past summer it took me out for the whole day. I had a severe chest pain and sweats, it really fucked me up for the day so Im a little afraid to try it again. I was in a realllllly bad flare though so thats something to consider. Hope this helped/ id appreciate any advice.

    • Bev February 6, 2012 at 5:04 pm #

      Hey Jim…

      That reaction you had to lialda almost sounds like a bit of an allergic reaction. I`m no professional, but I take 12 asacol (same drug as lialda) pills per day (i`m in a six month and counting flare at the moment), and I do not have that reaction to it, flaring, or in remission. As to whether it may act different in remission…I think if you can`t tolerate it, you can`t tolerate it.

      You can read my comments about what I think about remicade and imuran and the like further up this same page.

      Cheers, and good luck to you,
      Bev:)

      • mitchell November 17, 2016 at 3:32 pm #

        i was recently put on asacol and started experiencing severe chest pains. turns out a rare side affect of asacol is inflammation of the pancreas and after a trip to the hospital turned out i had pancreatitis on top of UC. 5 days in hospital and now on prednisolone which is working. from 40mg now down to 20mg with about 4 weeks until i am off.

  3. OrdinaryWorldWhereRU February 6, 2012 at 4:28 pm #

    Like Kelly, I am on Remicade. My doctor and I discussed it and the damage that my disease was doing was far worse than potential side effects. He said no more prednisone. I was also a pretty severe case. I haven’t experienced any side effects yet with Remicade. My disease is much better and I seem to be continually, slowly improving. If an immune system goes haywire, then the general statement that you shouldn’t shut it off may not necessarily apply which might be something to consider. Like when Type I diabetics have insulin problems because their bodies go haywire in that regard. Plus, these biologics are targeted drugs which don’t shut the entire thing off, but are selective in what they target. Prednisone will shut the whole thing down though. I hope this helps ease your mind as you think about this. I had a ‘talk’ with myself that if I had cancer, I wouldn’t hesitate to treat it with what they need to so why should I with this chronic, incurable disease? Take good care of yourself.

    • Bev February 7, 2012 at 9:52 am #

      Although I say I’d never take remicade…good point OrdinaryWorldWhereRU…good point…

  4. Bev February 6, 2012 at 5:00 pm #

    Hi Tracy,

    It sounds like you are in the exact same boat that I am in at the moment. 12 asacol tablets per day, along with the enemas every day put me into remission three times in the last 15 years. This last flare, and subsequent colonoscopy, however, revealed that I now have pancolitis, which just means total colon ulcerative coloitis. I went up to the highest dose of asacol, 12 per day again,(same drug as lialda), as well as the enemas everyday again, and I cannot get in into remission this time. Of course, now, my gastro wants me to try prednisone (which I don’t tolerate well at all), remicade, and imuran.

    What you say is precisely why I will not take remicade or imuran. They suppress the immune system! How on earth can that not do us more harm? I just can’t do it. I would rather bleed than hurt my already compromised immune system. This cannot be the answer. Needless to say, my doctors think me a very difficult patient, indeed. The ‘looks’ you are getting from your doctor, well, I understand what you are saying! I swear that this wonderful website makes me stronger and stronger, knowing that I DO NOT have to take these drugs, even though a health professional is recommending that I do! It is my body, after all, and it’s the only one I have and ever will have. Once permanent damage is done to our bodies, there is no turning back. I already know that from taking ACCUTANE four different times for acne 15 years ago…and now my colon is destroyed. Go figure. And my doctors want me to ingest even more dangerous drugs to bring about remission? I don’t even think so!

    I read the comments from Jim and Kelly, and truthfully, I haven’t heard that many good stories about remicade and imuran. Sure, they can bring about remission, but then, all of a sudden, the colitis is back again, and those drugs either don’t work anymore, or you have to take higher doses of them to get them to work. Does this seem reasonable to you?

    I have been taking the highest dose of asacol-12 pills (lialda) again, which I put myself on, as I have a long standing prescription for them, and a strong probiotic every day. Things have settled down again in the fequency and blood department and I know it isn’t remission, but, it’s better than the alternative. I have also asked to be referred to a specialist who will actually do the fecal bacteriotherapy (feces enemas) procedure, which I believe is a cure, but nobody will come right out and say it. My gastro reluctantly referred me when I asked her to, so I am awaiting a phone call right now. If that doesn’t work, but I think it will, I will actually consider getting my colon removed, as I am still relatively healthy, and don’t want to have to have it done if I get really sick. I actually would prefer the surgery to all of these ‘death drugs’ as I call them. Remicade, imuran, humira, etc…

    Now, we are all different, and I know I might sound a bit loony…or a lot loony, but I do not wish to harm myself anymore. I want to try everything natural, and if nothing natural works, I will opt for the total colon removal and just be done with all of this. Imagine a life like it was before we got this disease…no medication every day of our lives…no pain…no worries about going to the stupid bathroom…aaahhh….unfortuately, I always wake up after this dream…

    Cheers, and best of luck in whatever you choose. Remember, we are all different, and we all have a choice! It`s difficult to stand my ground because it`s not in my nature, but I have been trying!

    Bev:)

  5. Maggie February 6, 2012 at 5:07 pm #

    It’s amazing how differently drugs effect us all differently. I got very sick on azathiaprine and will never take it again. Entocort cleared up my last terrible flare after 2 weeks but when I got better I had to go off it because it was making me very jittery. I too have psosrisis and have not had a flare of that in several years until recently and only using lotion on it now. Tha meds effect us all differently, but, yes, it’s best to get off gluten. Wheat has been altered and some of us simply can’t handle how man has fucked up a perfectly good grain to make it “better.” I discovered I am gluten intolerant and have consumed it in many types of products for years only to realize how badly I was poisoning myself and the damage it did to my body i.e. colitis, psoriasis, psoriatic arthritis, chronic fatigue. It’s a drag to be off it but the rewards are better. Good luck with your meds and diet.

  6. garry February 6, 2012 at 5:24 pm #

    i was on imuran (6mp) twice and it seemed to do me no good. this was the drug that that was supposed take effect 4 to 6 months after first taking it and required frequent blood tests to make sure it wasn’t causing liver damage. i never saw any improvement. diet and controlling harmful stress are the only things that seem to work for me.
    best of luck.
    g

  7. dave evans February 6, 2012 at 5:36 pm #

    Imuran did not work for me either and have now been on remicaide for almost 3 years and not having any problems with it and along with no flour sugar carbonation etc no flares—remicaide may help your psoriasis as well as it could be related to your UC–good luck

  8. JeannieBeannie February 6, 2012 at 6:21 pm #

    Hi there Tracy! I am in the medical field and was diagnosed with UC just over 2 years ago. As with any medication, it is not a good idea to start or stop any medication with out consulting your doctor. And again, with any medication, there will be a chance of side effects. But the good out weighs the bad. The risk of something terrible happening is always less than the benefit. I have been on Imuran for about 4 months now. I have not had a single problem. I did come down with bronchitis, as I do almost every year, but that probably has more to do with the three snot-nosed kids I have. I work in a doctor’s office, I received a flu-shot, and I have been healthy. Any medication can effect everybody differently. What works for one person, may not work for another. But ut can’t hurt to try it. I was nervous. My next step will be Remicade. I am now off my Prednisone and symptom free. I wish you luck and good health. Please have trust in your doctor, they know best.

  9. Greg February 6, 2012 at 7:14 pm #

    I’m in the same situation. In a flare since October. Doc says I am steroid dependent so no more prednisone. So she (the GI doc) says I am a good candidate for imuran. I told her I am going to try to get out of this flare with diet and VSL3. She rolled her eyes and said ok. Im also taking salofalk. She said if I do imuran and want to discontinue, I have to do about a year of it first. I did some research on it and it increases your cancer rate. Scary what you need for blood tests for the first while! I saw someone on a UC site say “great I’m out of a flare and now I have cancer” jokingly as they also declined imuran. I just bought a yougurt maker and the SCD diet book and am also trying some fecal transfer on my own. A month ago I was doing 30 BMs a day and now I am down to about 10. Before I got UC about 3 years ago I did 2 BMs a day maximum. I’d like to find some instructions on Fecal Transfer as I’m not really sure what I am doing. Like how much to transfer etc. I’m pretty sure I have screwed up flora in my gut as just before I got UC I was on I powerful antibiotic for quite a while. The UC came on like overnight. My 2 cents…

  10. Desperate Husband February 6, 2012 at 11:02 pm #

    Tracy, I don’t know how much help I can be, but here’s me. I don’t take any meds, and never have. Of course, I’m in permaflare mode. Unfortunately, my life position sort of forces me into seeking alternative medicine rather than prescription. I’ve followed SCD, use Vitamin E enemas, and am currently waiting for my Boswellia to show up in the mail so I can try that. Research these 3 things on pubmed and you’ll find published medical studies on all of them. Well, on vitamine e and boswellia at least.

    Back in the summer, I was in major flare mode with significant blood and mucus. Since starting the above protocol, I drastically reduced the blood mucus–drastically. Although they are not gone yet totally, they are at the point where I’m not freaking out thinking I’m bleeding to death. Crossing fingers that boswellia is as good as people say. Med studies showed it to be more effective than prescription meds.

    -DH

  11. Desperate Husband February 6, 2012 at 11:06 pm #

    Also check into ashwaganda and its studies. :)

  12. Laura from Toronto
    Laura February 7, 2012 at 7:22 am #

    Hi Tracy,
    I have never been on Imuran, but I have been on two other immunosuppressants. Remicade and Humira. Although I wouldn’t ‘recommend’ them to anyone, sometimes the choice is taken out of your hands. It seems as though right now you still have a choice. The Remicade worked for me at first but then stopped, I did not have the best experience with it. I was able to talk to many people in the clinic where I received my infusions, and most of them were having great success with the drug and were in remission and living a normal life. I was so apprehensive about it at first. I mean you read over the side effects and it’s so crazy, what I can tell you is once your doing it, it doesn’t seem that bad. It’s weird I know, but after the first couple times you don’t worry about it as much. Perhaps it was because every 4 weeks I saw the same people and met different (everyone was on their own infusion cycle) and everyone was pretty happy about the drug. Some even stated it saved their life. For me, I had all sorts of infusion reactions and still took it until it didn’t work for the uc anymore. I guess remembering how ill I was, and how poor my quality of life was, it was worth it. Don’t get me wrong though…I still hate the drugs and am now on the scd diet which seems to be working really well and hope to be drug free sooner rather than later. The Humira on the other hand, I don’t think I like. ( I am still taking it ). Since being on it, I have had the flu (which I never get!), which turned into a cold that lasted 6 weeks to full on Shingles which I currently have. ( Yes, they are extremely PAINFUL!) ( I never had any infections or viruses while on Remicade, which I think was strange ). I see my GI tomorrow and am not giving myself anymore injections until the Shingles clear. And then if the diet still seems to be working I am going to just stop.
    My advise to you is listen to your body, uc can do so much damage and if your flare continues all sorts of other issues will manifest. Joint pain (which most of us have), eye inflammation, and so many others. Having us is enough to deal with, take care of yourself and good luck!
    Laura

  13. iluvmybike February 7, 2012 at 7:31 am #

    i was in a flare that landed me in the hospital for 3 days last may. the first night there they put me on imuran as well as a higher dose of pred. i thank my stars everyday because i’ve been well since. there are side effects like mild nausea in the mornings and slightly swollen ankles, and i can’t determine if my mild mood swings are the meds. or just my natural ‘zest’ per se:) anyhow, i am happy with my imuran experience so far- i have my life back. much luck to you on your journey!

  14. Bev February 7, 2012 at 10:05 am #

    I think it is so difficult to have this particular disease. There are so many different symptoms, so many different degrees of illness, and so many different treatment options.

    Does anybody feel as crazy as I do? I just don’t know what to do at any given time. I know that I always have to stay on maintenance drugs, that’s a given.

    I just wish, like evryone else, that there was a definitive answer…

  15. Rachel June 2, 2014 at 2:25 am #

    Imuran is the next option for me having exhausted three types of 5 ASA and pred and none are working anymore. I am having a mild flare where I’m having 3 BM per day, left sided pain and sometimes bloody mucus and sometimes not. The flare is going in to its third month now and I am so fed up with it. Doc said next step is imuran but like you all I have my reservations about it. I mean is my uc that bad to warrant using such a strong drug? Not sure I should hold out for the flare to run its course whilst I’m taking rectal meds and asacol or should I just try out the imuran and hope for the best??

  16. Steve October 8, 2014 at 5:13 pm #

    Hey everyone I have colitis since iam 18 now 29 I had a very hard life Iam in a flair right now as I was doing good for one year on imuran 100 mg a day and asacol now got me on predisone I hate that drug makes me see things and get really depressed and feels like Iam not in this world I would love for some one to send me a msg and we can have a good chat

  17. kareena August 9, 2015 at 2:25 pm #

    I was about 8 years old when i first began my treatment in a hospital, i used to have swollen glands most of the times and they turned out pretty bad. My doctor later said my disease was something called sjogren syndrome, she put me on plaquenil first then after a few months i was told i should consume imuran also. Everything was fine at first then one day i was gone to school i wore a legging (instead of high knee socks) as it was winter, while i was walking home with my mother i noticed my legs were aching but i paid no attention to it. So i got home and changed and bam thats when i noticed my legs (below knees to ankle) were completely red! At first my parents didn’t really pay attention because they thought it was a minor thing but after so many years of it coming and not leaving at all we finally found out it was a disease called vasculitis to be specific “golfers vasculitis” it comes due to heat. Everything i’ve tried to keep the Vasculitis away failed. Advice on how i can treat it? I’m now 13 years old.

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