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Imuran or Remicade

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Ulcerative Colitis
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Posted 9/26/2010 11:02 AM (GMT 0)

Went to my GI doc last week and he wants to put me on Remicade or Imuran for maintenance.  I'm currently taking 15 mg of Prednisone and he thinks I'll go back into a flare if I drop below 15mg.  I am allergic to mesalamine and sulfa so I guess this is my only option for maintenance?  It seems a bit extreme to me.  I have UC - only in the rectum.  I've read lots of stories on this forum and I'm leaning towards Remicade only because the Imuran seems to make others more fatigued.  I'd really like to take nothing, but once again, reading through the forum here, that doesn't sound like a smart option.  Any thoughts?

Posted 9/26/2010 11:42 AM (GMT 0)
I agree with you there - unfortunately, taking nothing doesn't sound like an option, at least at this point - there are people who have managed their UC with diet and supplements, but they are few and dedicated.
There are good and bad stories about both meds on here, and I'd remind you that the folks for whom either is working perfectly are most likely out living life rather than seeking help on a forum!
Check out Malvakian and MyUC's posts for good words about Imuran... there have been some recent excelent reviews of Remicade, too, and hopefully those folks will chime in.

We all come to various medication decisions along the way.... always difficult. Good luck!
Posted 9/27/2010 11:51 AM (GMT 0)
I take Imuran for my UC.  My colitis was widespread before but now my entire colon has healed.  My understanding is that most docs and most patients would consider Imuran before Remicade for many reasons.  Imuran has been used for decades for UC whereas the studies for Remicade with UC has been less than 10 years.   Imuran comes in a pill form that I take in the evening.  Remicade, you have to go to an infusion center.  The costs for Imuran are very minimal because it's been around a long time whereas Remicade even with good insurance can cost a pretty penny.  Also there is the cost of sitting there for 3 hours and transport time although many people here like the time to themselves. 

I don't love Imuran over Remicade.  I would rather not take either one.  If Imuran fails me I would then try Remicade.  Also I don't have any side effects that I am aware of from the Imuran, it's put the smack down on my UC.

MyUC

Posted 9/27/2010 1:18 PM (GMT 0)
If I had to choose one of the 2, I'd take the Imuran to start with. Imuran is just a pill to take once a day. You don't have to go into the dr's office to get an infusion, don't have to take any time off off work, just one pill a day. All medications have a different effect on everyone else, so Imuran may make others feel weak, whereas to others it may not give a side effect. It didn't to me. I was on Imuran and Humira for 1 1/2 years together, then went off the Imuran and have been on the Humira since I first started. Remicade is considered one of the last steps before surgery, so I'd really think about taking the Imuran before the Remicade. I agree with MyUc about the cost of it, Imuran is way cheaper than Remicade, everyone has different insurance and my insurance paid for all of it, but..... still. Imuran can be a lifesaver and save you some money.
Posted 9/27/2010 7:23 PM (GMT 0)
I'm very happy with Remicade.  It's been my miracle drug.  I'm off everything but Lialda (down to 1xday), and I'm hoping to get off that soon too.  I literally haven't felt this good in YEARS.

Oddly enough, I find that I really enjoy the infusions - it's a chance to sit and chat with other people with IBD, chill out and do nothing for 3 hours every 6 weeks.  With a 6 month old baby, that relaxing time isn't easy to come by!  :)

Posted 9/27/2010 7:47 PM (GMT 0)
I was so glad to see this post today as I literally just sat down at my computer after an sigmoid scope from the doc an hour ago.

In front of me, I have a bottle of prednisone and and new bottle of Imuran. My UC is in a bad flare and Im now having to look at other options for meds. Ive taken prednisone, but now this is the second time this year and my doc wants me to try this.

Good feedback is nice to read about it.
Posted 9/27/2010 8:24 PM (GMT 0)
Hi  ,,my son who is 43 has been using Remicade going on 2 years now....It has been a miracle for him and he doesn't take anything else but a

multivitamin.  He has a carpet cleaning business that keeps him quite physically busy and he feels normal again.

I am wondering how long has Remicade been used and when might it ever go generic.

Posted 9/27/2010 9:57 PM (GMT 0)
Thanks for the feedback everyone. I was a bit freaked out by both of these drugs, but I have definitely calmed down a bit now. I was just looking at my colonoscopy summary from last month and I misspoke. It appears that my sigmoid colon is now affected to 25 cm. Nice they told me. (insert sarcasm) They told me in the hospital essentially nothing had changed since February when it was isolated to my rectum at 6-8cm. One more thing to add to the growing things I don't like about my current GI docs and why I don't trust their opinion on what drugs I should be taking.

I guess the main drawback I have on the Imuran is the fatigue. I'm just getting my iron levels back up and working out is a huge part of my life. I wasn't able to exercise all summer and it feels so good to have the energy to do it again. I have read that it makes a difference if you take it at night, rather than during the day, so I'll give it a shot. I feel like if Imuran doesn't work well for me and my lifestyle, then I'll go the Remicade route. I haven't heard any horrible stories about Remicade side effects from anyone taking it but the infusion part will be a challenge - not to mention that I'm not sure I can sit still that long. ;-) Has anyone on either of these drugs noticed a huge change in how their immune system reacts? Do you get sick more often?

Onebumgut, let me know how you make out with the Imuran. It's going to be about a month before I make my decision because I have a spot that showed up on a chest xray. Nobody thinks it is anything to be concerned about, but because of the immune system supression, I have to see a Pulmonary doc before they'll start me on new drugs to get me off the Prednisone.
Posted 9/27/2010 10:04 PM (GMT 0)
I've worked in child care while on both Humira and Imuran and I wasn't sick once and I was on Imuran for 1 1/2 years. I was 100% functionable while taking these drugs.
Posted 9/28/2010 2:45 AM (GMT 0)
I would probably try the imuran first because if that doesn't work you have remicade or humira next. I had fatigue with the imuran(I'm allergic) and I have extreme fatigue with the remicade. Remicade has helpped my symptoms but hasn't healed my colon, so I have to go off of it. Next I guess(I haven't made up my mind) is humira. I started from the bottom(medication wise) and worked my way up.  The imuran is worth a shot if it doesn't work than try remicade. Though alot of people have had success on both. Good luck.
Posted 9/28/2010 4:38 AM (GMT 0)
My situation is exactly like OP (in terms of UC) and I am on Imuran for more than 3 years. Don't quite experience fatigue, go for imuran before you go for remicade or humira.
Posted 9/28/2010 8:38 PM (GMT 0)
I'm on both Imuran and Remicade. Definitely go with the Imuran first since Remicade should be considered your final option. Imuran is also less invasive since it's only pills.

I never had any fatigue when I was taking only Imuran. I actually don't have any side effects for either drug though, and my remission right now is amazing.
Posted 9/29/2010 1:45 AM (GMT 0)
myuc:
You say that Imuran put the smackdown on your UC. Can you elaborate, and tell me what days are like for you?
Posted 9/29/2010 1:58 AM (GMT 0)
daughter has been on both. the Imuran made her toxicity levels go way up and the test through Prometheus Labs in Los Angeles indicated that her body wasn't responding as it should. We then moved on to Remicade, which was a miracle after the first dose. She is no longer able to take the Remicade due to a septic joint (Remicade lowers the immune system and you may become susceptible to such infection). She also had a severe allergic reaction to it during an infusion and the respiratory doctor said no more. Not trying to scare you, just be careful. Remicade was wonderful for those first 6 wks. It made our daughter a new child for that short time. make sure you take benadryl and tylenol both well in advance (like an hour) before each infusion. I recommend having the infusions in a hospital or infusion center where a doctor is available. we were lucky to have a doctor on site, as some of the clinics don't have them on site. it sounds odd, but i'd totally recommend the Remicade.
Posted 9/29/2010 2:51 AM (GMT 0)
FutureMD:

Yes I did indeed use the phrase "smackdown" when referring to how Imuran beat up my colitis.  Almost all of my days now are completely normal.  I go #2 once a day with no blood, no mucus, no urgency, etc...  I don't even think about my colitis anymore other than I am taking a medication daily to keep in check.  I don't deny myself the many things I used to due the previous fear of having to go to the bathroom. 

As an example this last weekend I drove two friends of mine to meet another friend in Rhode Island.  It was a 2-3 hour drive.  We went ocean fishing at midnight and ate a variety of stuff our meals.  I mean we ate anything and everything.  The four of us finished at least 2 cases of Octoberfest beer.    The colitis was a non issue.  I would never have been this cavilier in the past when flaring.

I believe the Imuran put the smackdown on my colitis and made it tap out!  It's like my pre-UC days.

Hope that answers your question.

MyUC

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