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Posted 10/31/2012 10:29 PM (GMT 0)
Ok, my gi doc's nurse called me yesterday and said they want to put me on Imuran. I haven't even been diagnosed with UC for a month yet and haven't finished my first predinsone taper yet. I know my inflamation was pretty severe, but my bms range from 4 to 7 times a day with little or no blood. I feel like he might be jumping the gun after looking at all the side effects of this med. I'm really nervous about going here so early on. I am significantly underweight and don't want to compromise my immune system any more than it already is (I know the predinsone is alreay doing that), but they are talking about Imuran long term as a maintenance drug.I also have had some liver issues this year so.... Also he is keeping me on Asacol too. Is that typical? Am I just unecessarily worrying here or do I have a legitamate concern that he may be jumping to this a little early? I guess I should mention I don't trust him a whole lot but am stuck in a town with 4 gi docs that all work together and won't step on each others toes by taking each others patients so I'm stuck. I usually consult my surgeon (who I trust implicitly), but he admits to not being real familiar with the different drugs used for UC.
Posted 10/31/2012 10:52 PM (GMT 0)
What are your expectations? Were you thinking that the prednisone was going to put you into remission and then you could taper off? Were you ok with taking prednisone forever? Did you have something else in mind? I am also having formed stools and no blood and going about 6 times per day. I am only on Asacol for prescription, never took any pred or anything else. I am doing several alternative, natural things. I don't want pred, imuran or biologics. Having said that, the doctor knows that pred will never put you into a pred free remission without doing a maintainence therapy of some kind. It is actually fairly common to use pred short term to put you into remission while also doing imuran and asacol (or other things). Imuran can take several weeks to a few months to start working so you want to start it while on the pred so that by the time you taper completely off, the imuran has begun working. You need to read up on this disease thuroughly and decide for yourself what you want to do. As I said I don't want to do pred, imuran, or biologics but your doctor is actually doing a smart thing, assuming you are ok with being on Imuran. You need to study up on other options so you can decide if you are ok with that or would like to do something different.
Posted 10/31/2012 11:29 PM (GMT 0)
garlouisville- I'm personally not crazy about any of the meds. Was not for going on the predinsone but everyone seemed to say it was necessary so I took the plunge. I actually will be done with my taper in 7 days so, no I didn't expect to be on it long term. I figured that was what the asacol was for. I would like to be able to do this naturally or as much as possible unfortunately my health circumstances don't give me a lot of wiggle room to try different things until something works. I've been trying to do research on this disease since I found out about it. A lotof times I just feel more confused frustrated and a little scared. For me it seems like the more knowledge the less piower LOL. I know everyone is different. I guess I just wish I had a doctor that was willing to discuss things with me not just throw me on something and say take this. But wishing doesn't change circumstances.....  Thanks for your input =)
Posted 10/31/2012 11:36 PM (GMT 0)
This is what I think these people would suggest you do:

smilewinkgrin

Insofla : Get a script for LDN

Quincy : Get rectal meds

Stereofidelic: Change your diet Gluten Free/ Dairy Free

Me: Get on Remicade

BeatUC : Get on Imuran

ByeByeUC : Surgery (if stuff don't work)
Posted 10/31/2012 11:42 PM (GMT 0)
Maybe it is your relationship with the doctor that needs working on. Does he know how you feel and that you would like to discuss things? Most doctors have patients that have little knowledge and just want the doctor to tell them what to do so it is up to you to make the doctor understand that you would like to be part of the decision making process and discuss things. If your doctor won't do that then it is time to get another doctor. If you don't want to do Imuran then you shouldn't. I'm certainly not there yet. I would rather go 6 times per day then take the chances on some of these meds but I am doing better than most. If it wasn't for the frequency I would be a totally normal person.
Posted 10/31/2012 11:45 PM (GMT 0)
Introducing Imuran while being on prednisone is actually really common since prednisone provides quick relief while Imuran can take up to three months to be in full effect. I'm not sure about still being on Asacol though, seems a bit redundant to be on it if you are going to be on Imuran since Imuran is usually indicated for people that didn't get better with mesalamine. If I were in your situation, I would use rectal steroids and mesalamine while tapering off prednisone. Then again, your signature states you depend on a feeding tube, so maybe you need the big guns to stop your UC flare.
Posted 11/1/2012 1:17 AM (GMT 0)
I am not sure how long you've been on prednisone but usually the doctor wouldn't say to try imuran unless you were having trouble tapering off with mesalamine medication. I tried everything to get off pred without starting 6mp. I as using rectal meds, both steroid and mesalamine 2x a day, I tried antibiotics, I changed diet... Nothing worked and eventually I went on 6mp. While I don't like being on this stuff, I have been able to live normally and i've been in remission longer than I was while taking Asacol for maintenance. I am hoping I get a long-term remission with 6mp. Some people have long-term remission with Asacol and I think that's a better solution if it works for you but it seems like our UC sometimes becomes unresponsive to mesalamine and if that's your case, imuran may not be a bad option.
Posted 11/1/2012 3:12 AM (GMT 0)
I plan on talking with the doctor again to see if we can discuss what options are available. I just have problems with the fact he is one of those type doctors that says do what I prescribe or don't, I really don't care but is not open to other ideas. This is the same man that told me after I hadn't used the bathroom for a month (had a bowel obstruction), if you take enough laxatives, you'll go. Not got a lot of confidence in the man. But, as I said before, because I am in a town with only 4 gi docs that all work together, none of the others will take me since I started out as his patient. Gotta love small towns. Have played around with the idea of seeking someone in one of the bigger cities. Not sure yet.
Posted 11/1/2012 3:22 AM (GMT 0)
tmckinz - Are your symptoms starting to come back while backing off of Prednisone? It sounds like you are already on Asacol or Lialda. If you've only had UC a month, it seems like you the doc hasn't given the Asacol/Lialda a chance to maintain remission. If you taper of pred, use Lialda or whatever, THEN flare again, then I can see the doc upping to Imuran. The Prednisone is supposed to make you better (remission) then the Asacol/Lialda/Colazol/Asipro/etc. are supposed to keep you well. Personally, the Imuran just seems a bit early to me.

And as for your concern about being on multiple meds....at one point I was simultaneously on: Prednisone, Remicade, Lialda, Imuran, and hydrcort enemas. But I had very bad UC.
Posted 11/1/2012 3:38 AM (GMT 0)
Somedude, you forgot some...

Old Mike: research it

BabeintheWoods: start a food journal

imagardner:

soystud
Posted 11/1/2012 3:42 AM (GMT 0)
Me: lower fructose

Bananagirl: go Paleo

Ummm.... Who else?

We have great a group of advice!
Posted 11/1/2012 3:46 AM (GMT 0)
Tmckinz- it look me a whole year to accept the fact I needed to try Imuran. I was tired of trying diets and other meds doing nothing. I was shocked when my doctor suggested it after being diagnosed 5 months prior....I'm still not accepting it! I wish I wasn't on 6MP!
Posted 11/1/2012 4:04 AM (GMT 0)
ActiveUCer.... My frequency has kind of remained pretty constant even while on the pred, but its not as bad as some have it here. My bleeding actually stopped before I began the pred. Since tapering, I see some mucous with a little blood maybe once a day but it seems to get lighter the longer I am on the tapered does (ex. will see it more darkly the first day of 5 that I go down but usually by day 3 I am having almost none usually) Its hard for me to know how much of the frequency is due to the UC and how much is due to the fact that my cecum was removed this summer due to a bowel obstruction though. All of this kind of happened at the same time so its the whole what causes what thing. All I know is the pain that I was in is less and ever since I went NPO for the sigmoidoscopy, I at least don't gush blood. Just a little with the occassional mucous so far.

Madpotter...Its nice to know I'm not the only one =)

Posted 11/1/2012 2:09 PM (GMT 0)
     I didn't read all the responces so forgive me if this is redundant.  Asacol is your maintenance drug and your doctor will most likely keep you on that forever.  Mine was Colazal, which really didn't keep me in remission, but I do believe it kept my ulcerations confined to the rectal area.  In the entire twelve years I suffered with UP, my ulcerations never traveled further into my colon.

     I was diagnosed in 1998 and started with Asacol and prednisone.  I had a two year remission but then flared and my GI doctor switched me from Asacol to the Colazal again along with prednisone.  Another two year remission.  In 2002, during my third bad flare was when my doctor placed me on 6MP.  I always had to take the Colazal and some form of rectal med, be it Rowasa or Cort enema or Canasa.   I took the 6MP for seven years.  It did NOT keep me in remission.  However everyone is different.  Best of luck to you.

Posted 11/2/2012 1:42 PM (GMT 0)
Usually your GI would want you to go on the 5 ASA meds first to see if they will work after you taper off the pred. If they don't work then your GI would usually put you back on the pred and start you on the Imuran or 6MP and hope that that works in about 3 months.

If I had it to do all over again, I would have preferred to taper off the pred and start Imuran right away and not allow my colon to become anymore damaged than what is was when I was diagnosed.

Instead we went the 5 ASA med route which eventually lead to more flares and more pred use and more damage to the colon.

I've been major flare free since Imuran kicked in and wish I would have started it right off the bat, would have saved a lot of pain and would have got my life back quicker.
Posted 11/2/2012 1:55 PM (GMT 0)
I agree with JHarvey. I messed around with mesalamines and diet for a year and at one point I had severe inflammation and possibility of dysplasia. That was really upsetting. I eventually agreed with my doctor and went the Imuran/6MP route. BTW, I don't think my doctor believes in prednisone. He's never prescribed it. He pretty much thinks its temporary and causes unnecessary side effects. On my first doctor visit he suggested SCD diet and Imuran to get things under control. I was still in denial and shock I think. Do what you feel comfortable doing....if you are not there yet (mentally) tell your doctor you are not ready and do some research and try other things.
Posted 11/2/2012 11:56 PM (GMT 0)
Thanks for all the input. I'm going to talk the doctor about all of our options I think, and then decide what I feel comfortable with.
Posted 11/3/2012 7:06 AM (GMT 0)
It wont hurt trying Imuran at least for one year. See if it clears things up. This disease is ridiculous by the fact that we have to try so many different things to see what works best for us. Your doctor will check your blood levels often while on Imuran and if it starts to effect you in any harmful way, ie: your liver, they will immediately take you off of Imuran and those side effects should subside. I'd rather want my colon healed then one day getting colon cancer because I neglected to heal my colon. Just a thought.
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