Imuran or Remicade? or neither?

hi,

i'm so sorry you are suffering.  i can relate to the "living like an elderly woman" thing - i think that to myself often these days!  it is a tough call as to what to do.  UC struck me while i was in college and i understand what you are going through.  i was able to get by w/asacol and rowasa enemas (and prednisone for big flares)...for awhile.  when this last flare hit, i went on prednisone and it didn't seem as effective.  i am still struggling to get off of it and get this flare cleared up.  however, like you, i didn't want to try remicade or immuran.  but i eventually caved in to taking the immuran because the pred just wasn't cutting it like it used to, and i really don't want surgery.  i guess what i'm wondering is: is the prednisone helping you at all?  if not, immuran or remicade are the next drugs to try according to the docs.  my impression (and i am not a doctor!) is that the immuran is the lesser of the 2 evils.  however it does take some time for it to build up in your system (months sometimes).  i am not sure if it is doing anything for me to be honest w/you, but there are people on this forum for which it has helped a lot and they seem to live normal lives.  MYUC is one person on this forum - maybe he will respond to this post, because he's had great success w/immuran.  i guess it's trial and error - everyone's different.  like you, i am an outdoorsy person too.  immuran has made me more sensitive to heat/sunlight.  so i try to do things outdoors later in the afternoon.  but everyone is different - perhaps it wouldn't affect you the same way it does me!  i have heard that one should wear sunscreen while on it.  have you tried many alternative treatments, such as probiotics?  they have helped me some - i take 3 pills daily of the renew life ultimate flora critical care 50 billion...if you are just starting, i would only start w/one pill, then work your way up to 2, etc.  what about diet change/food journal?  some people cut out certain foods and have had success.  what about steroid enemas?  some people have had success w/those.  i wish i could give you some concrete advice, but i think what works for one person doesn't always work for another.  please don't despair - i totally know how you feel, and it's very frustrating.  you are not alone.  and remember, it's your body - don't let the GI's push you around.  on the same note, don't let yourself get so low you get in trouble of having to go to the hospital!  don't let uc keep you from your dreams either...i live in the country and have horses and dogs (always my big dream!) and while i can't always do everything i want/the way i want (like before uc), i try to focus on what i CAN do and take it a day at a time.  good luck, and i hope you can get a good remission going for you!

I honestly don't know which of the two I'd choose, but I'd definitely either do Remi or Imuran before letting UC control my life for that long. If you are really that scared about those meds, you could always consider surgery, and just be done with it.

Imuran has many positives when compared to remicade. It has been used for a very long time and is actually pretty safe for most people if it doesn't initially cause you problems when you first start taking it. Any competent doctor will monitor you closely to make sure it is not causing any serious problems like liver issues or pancreatitis.

The other thing about Imuran is that it has the potential to work for a long time. Unlike remicade, your body doesn't develop antibodies to it, so it can work indefinitely for some people.

Unfortunately for me I am allergic to Imuran. I'm stuck with remicade as my only option at this point.

Oh - I need to modify my sig. because thanks to Imuran I have been able to stop taking Apriso! :)

Kate22: I do take prednisone, I've been wavering between 10mg to 2mg for almost 2 years now, currently taking 10 and that is as high as I can and will go. the highest I've been on was 60mg and that made me turn loony :) I will probably take the imuran just to try and stop the madness. You know how sometimes you try and try all these different things out there natural or not, just hoping and being positive that one will help? well I think I've tried for a long time now and I am just too tired to keep trying. good luck to you too and Thanks for your words of encouragement.

Thank you everyone for the support and answers. I am so happy to have found this community and hear that there are so many others with questions and problems like me. Although I wouldn't wish this disease on my worst enemy, it is nice to know that I am not the only one.

I will talk more with my new GI about both the drugs on the 21st... but all of the knowledge here is way more than any doc can have! one thing I do know is that I will try to hold off on surgery as long as possible. Hope for the best and thanks again.

I'm on azathioprine (imuran but mines a different brand name) and it working really well for me, ( I feel like touching wood every time I say that!) It may be a big time drug, but I very much prefer it to prednisone which in addition to turning me into a babbling idiot on occassion, has its own, fairly serious, long term consequences. And as my GI was very very firm about - untreated or badly controlled UC has its own long term cancer consequences.
I'm a birder and have always spent lots of time outdoors in the sun Yup - suncreen is a must, but here in NZ thats the rule for everyone anyway, now I just make sure I have long sleeves on most of the time, and I don't miss the sunburns I used to occasionally get.

ryverwise:

MyUC here.  I flared on and off badly for years trying to use Asacol and prednisone as needed.  Eventually they stopped working for me.  I have been Imuran now for about two years and it has put me into a solid remission.  No side effects and my blood work has been just about spotless since I have been on it.  My last colonscopy showed a 95% healed colon with just two small patches of UC.  My GI doc has since put me on Canasa as well.  All l can say is that is has worked very well for me and I no longer am ruled by my UC.  I have a solid bowel movement once every 1-2 days, that's it.  It has given me my life back and I so happy for that.  I was hesitant too when starting it but my colitis wouldn't stop and the ASA's stopped working.  I would definitely consider using it.

MyUC

Glad to hear some positive feedback on imuran, when I was first told about it by my GI I went home and online to askapatient.com and looked at what "real people" had to say about the drug, BAD IDEA. First of all I didn't know anything about it other than he said I would do great on it, well, I was horrified and called my GI the next day and said no way, not ever am I taking that. I didn't read one good thing on there and cried half the night, I don't usually cry but I felt so hopeless.

That was almost a year ago, with one hospitalization, one blood transfusion, 10 iron infusions, and 100,000,000 trips to the bathroom later, I'm considering the risk. and glad to hear some positives from people taking it. I appreciate all the feedback and will update after my appointment on Tuesday and let everyone know whether I have bought a giant bottle of sunscreen or not. What are Pentasa, and VSL3? I feel like I've been left in the dark by my doctors with some of the meds I've heard of on here.

@MyUC: 95%!! that is amazing and makes me very happy to hear. congrats to you! You are living the dream with 1 BM every other day :) what is canasa though?

@Thoreau: good luck to you too, I read your post on the remicade and we are definitely on the same wave length. Your post actually made me tear up a little because I felt it. I know everything you are going through and what everyone else on here is going through too. Especially the traveling and being uncomfortable around people you don't know, social situations in general. I have been depressed also which causes me to stress out and then in turn leads to flares. So, yeah, I guess we just have to find good GI docs and try it? and try it before our colons can't wait anymore and surgery comes knocking at the door, the back door :) Thanks for the encouragement.

sorry, healingWell blanked out the last letters of Ashke- n-a-z-i for some reason, but thats what the spelling is if anyone is interested in doing research on it.

ryverwise:

Good to hear that our replies are helping you make a decision for yourself.  To answer your question Canasa is a rectal suppository that is made up of 5 ASA, about 1000 mg of it.  I have a very small patch of inflammation in my rectum.  My GI doc said that because of it's location, just into the rectum that Canasa is the right med because it directly hits the patch that needs to be healed.  Hope that helps.  Anymore more questions?  Please post away!

Happy holidays! 

MyUC

@baconeggsyum: I would love to try taking all those things but with basically no income I don't think I could afford them long enough to see results. I have seen natropaths in the past but usually ended up in the ER anyway. Plus at this point in my flare I don't know if anything besides the biologic drugs will help. Unfortunately. Did you try this during a flare? thanks for the suggestions.

updating from last time I posted I am not any better, I saw my GI today and he is checking to see if my insurance will cover remicade. :(

I'm still feeling pretty scared about taking it, since its sort of your last resort back up drug.

But here is what we talked about; I have seen over eight GI's since got this disease and tried many things, natural and not, have been told about surgery and all the great drugs but have always tried really hard to avoid the biologics. But now the last two GI's I have seen, who I have loved, they are one of a kind doctors, have both said I have really severe UC and my colon at some point, if I continue this way, won't be able to be saved. Which I've been told before but this time I really believe them. They even wanted to send me to the UW for treatment just so I could hear it from a big shot, I didn't want to drive all the way to seattle to hear it again. :)

I also talked to my GI about pregnancy and remicade, which I still don't understand, and if anyone can explain it to me better I would greatly appreciate it. could I stop taking it and be okay to have a child or would it ruin my chances of having a healthy baby forever?

we talked about getting off remicade and he made it sound like I wouldn't be able to, like its a life long commitment and that only a few of his patients have gone off of it, but only after YEARS of use. That worries me. I don't want to take it forever and would only like to ideally take it for a maximum of three years.
I refuse to take anymore prednisone and the wait for imuran to work would take to long in the condition I am in. I agree with him, my hematocrit is 26. So this is why he recommends the remicade.

Anyway, now I am at a loss of what to do and I think the doctors are getting tired of me. I was sort of excited after reading all the posts on here about imuran and was ready to take it. I could still take it but..... ???

Does anyone have anything very positive to say about remicade? or negative is good to know also! :)

Any thoughts or help with this would really make me feel a little better. thanks

I have no advice to give you (I'd love some too in fact), I can only share my own story. I just discovered this site and I feel like I need to start reading and typing! I have been dying to talk to people that I can (possibly?) relate to in terms of health.

I am a 25 year old female who was diagnosed with severe UC last November. I was on steroids for nearly 6 months and on the maximum dose of Lialda (4 pills) and 100 mgs of Azathioprine. Every time I tried to ween off the steroids I got extremely sick so I was advised to begin Remicade infusions in March of 2010. I had to have frequent infusions for a while because it tooks an inordinate amount of time for my body to get any positive effect from the treatment. I am now for the most part in remission but freaked out by all this medication that I'm taking. I've always been very natural and weary of modern medicine (even though it saved my life just last year) and aside from all the prednisone and pain killers I was taking last year at this time, I'm still currently on a daily regime of the 4 Lialda pills, 100 mg Azathioprine and 600 or 800 mgs of Remicade (I can't remember at the moment) every 8 weeks. I also take dicyclomene and zofran on occasion. I am for the most part in remission and begging my Doctor to get me off the Remicade. She wants me to have 2 more infusions and then she said very hesitantly that she'd be willing to work with me on getting off of it completely.

I'm worried that I'm being too irrational; I don't want to get really sick again but at the same time, I didn't deal with my symptoms for a really long time in the beginning. I was traveling and should have gone to the hospital weeks before I finally did. I feel like my body has to be given a chance. Maybe the Lialda and the Azathioprine will be enough? That is my hope anyway. Then at least I could travel again. The infusions make me feel very stuck. I can't really leave the country when I'm dependant on a ridiculously expensive drug that makes me profoundly nauseous.

Basically, I'm still torn about the Remicade. Yes it has worked wonders for me but I'm dying to get off of it. My friends and family (and Doctor) act like I'm some hippie because I'm genuinely concerned about possible adverse effects of the Remicade (and all the other meds in fact). I am not sure that I made the right decision to go on it in the first place and I hope to maintain my good health without it. I don't want to live my life like an elderly woman either :) but I also don't want to develop some rare cancer 5 or 10 years from now and become some freak case study...

Anyway, if you've already had the infusion I sincerely hope it helps you feel better. It took me a while to respond to it but after about 5 infusions, I felt normal again--could actually EAT. I hope you get the same results from it! Hang in there :)