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Remicade/Imuran vs colon removal

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Posted 12/11/2013 9:00 PM (GMT 0)

Hi, my most recent colonoscopy showed inflammation throughout my colon.  The nurse said that it looks like 5-ASA meds are not working anymore and that my GI wants to discuss starting Remicade and Imuran when I see him for my appointment next week.  I've been reading about the potential side effects of both medications, including the cancer risk, and quite honestly it scares me. However, I'm not sure what my other options are.  I'd like to stay on 5-ASA but if they are not working, they are not working.  Are there other medications that that I can try besides Remicade and Imuran or would the only other option be colon removal?  (Is Remicade considered to be a last resort drug?) 

      

 Any advice/information/shared experiences are appreciated!

Posted 12/11/2013 9:12 PM (GMT 0)
You're only on 10 mg of prednisone? And you've never taken more than that?

Are you currently using any rectal meds? Have you used any since starting this flare?

Is Apriso you current oral med?

Honestly, I'd get on mesalamine enemas (if you aren't currently), contemplate switching to a different oral mesalamine (as Apriso is a pretty low dose of mesalamine compared to Lialda and Asacol HD), and talk to your doctor about upping your pred to 40 mg before I'd use Remicade or Imuran.

My thought is that if you can get the flare under control with oral + rectal mesalamine and a higher dose of pred, there's a chance you'll be able to maintain remission on oral + rectal meslamine.
Posted 12/11/2013 9:31 PM (GMT 0)
Thanks Fruitgirl, this is helpful!  Yes, right after the colonoscopy on 12/6 I started the 10mg of pred and it's reduced my BM's from 10/day to 1-2/day, though they are not formed.  This is the first time I've ever had to take pred.  It really has brought relief, and it's only day 5.

I never took rectal meds until this flare.  I am currently using colocort enema in the pm and cortifoam in the am.  Both reduced the urgency/frequency when I stared them but it wasn't quite enough to get me out of the flare so the doc had me try Rawasa but I had a bad reaction to it, dramatic increase in frequency and urgency. 

Apriso is my current oral med.

I will look into Lialda and Asacol HD, and also the different types of rectal mesalamine, maybe I can try something other than Rawasa.  I'm really want to avoid Remicade and Imuran for now, especially since I've had very good luck maintaining remission with 5-ASA's.     

 

Posted 12/11/2013 10:57 PM (GMT 0)
I have been on Imuran for 4 years at 150 mg a day usually at night because they make me pretty nauseous. Now I have been tapering down to 50mg a day and no bad UC symptoms. I am so very scared of the cancers you can get from the Imuran ( blood, skin and breast cancer are in my immediate family.) that's the reason for the decrease. Also I HATE getting every cold, flu or sickness that is going around because Imuran decreases your immunity. So I would recommend it if you don't have a cancer in your family and get the flu shots.
When first introduced to Imuran I was scared to hell. I wanted surgery until I saw what it was like to have a J- pouch or an ileostomy for someone my age. So I made the choice to take the drugs and then go from there. Now research the drugs first and then go pro and cons and talk to your family and see what they have to say and then decide.
I wish you lots of luck and hope you feel better soon!
Posted 12/12/2013 12:04 AM (GMT 0)

UC since 98 said...
(Is Remicade considered to be a drug of last resort

No, there are many other medications to try but usually Cyclosporine is the drug of last resort..... If you want to skip all the medications then surgery is a good choice because about 30% of UC patients will need surgery in their lifetime.

I had surgery 2 months ago (after trying almost every medication available) and I feel better than I have in years, I wish that I had surgery years ago. It is major surgery so most people like trying every available medication first so it is a very personal decision.
Posted 12/12/2013 12:09 AM (GMT 0)
UC,

Yes, you could try LDN, low dose naltrexone.
It put me in remission.

If you need info on it, go to UC Resources page, and check out the last post.
If you still have questions, feel free to email me and I"ll help you out.
Posted 12/12/2013 2:07 AM (GMT 0)
It sounds as if you're probably intolerant to the sulfur preservative in Rowasa, since you can tolerate Apriso and other mesalamine-based oral meds. There is sulfite-free Rowasa...perhaps ask your GI about that.

I really think it's far too early to consider stronger meds and surgery.
Posted 12/12/2013 2:19 AM (GMT 0)
I would try the meds first (if you are willing). Remicade was my last resort drug.......that one and cyclosporine which I DONT recommend.

I had j pouch surgery three years ago and honestly I wish I did it sooner. But you never know if a drug helps you unless you try. Inflammation throughout the entire colon is tough. Good luck.
Posted 12/12/2013 2:45 AM (GMT 0)

ByeByeUC said...
I would try the meds first (if you are willing). Remicade was my last resort drug.......that one and cyclosporine which I DONT recommend.

I used Cyclosporine twice, I liked it and never really had any bad side-effects. I had to go in the hospital for if each time but my GI gradually increased my dosage daily while I was in the hospital so maybe that is why I did not have any side effects, each hospital stay was over 20+ days and 3-6 months on cyclosporine after I was released.

I agree with you that Surgery was a better decision for me and I wish I chose it sooner.
Posted 12/12/2013 2:38 PM (GMT 0)
I read your post and would like to share my experience with you. This time last year, I was a complete mess. Last December I was on 60 mg of Prednisone, which finally stopped my bleeding. Obviously, there were terrible side effects, but it worked. My doc put me on 175 mg of Imuran. It took a few months, but things got much better and I weaned off the prednisone by March. I started suppositories nightly, which also greatly helped.

My last scope showed my proctitis totally healed. I still had a little inflammation in the sigmoid. So, my doc put me back on Lialda (2 pills). I am happy to say I am in remission! No more blood, no urgency, and formed stool!!! I have my life back.

I was so afraid of the Imuran, but that, combined with rectal meds (which I now take every 3rd night) have really worked. It takes a lot of patience. In my case, I finally found a GI ( my 3rd one) who listened to me and worked with me. Wishing you the best! turn
Posted 12/12/2013 2:47 PM (GMT 0)
"In my case, I finally found a GI ( my 3rd one) who listened to me and worked with me."

imo, those are two of the most desirable traits in any doc - I don't care if he has pics of Boy George on his wall, picks his nose, and drives a dodge pick up, as long as he listens, he's ok in my book !

Post Edited (soystud) : 12/12/2013 10:07:13 AM (GMT-7)

Posted 12/12/2013 6:22 PM (GMT 0)

ks1905 said...

ByeByeUC said...
I would try the meds first (if you are willing). Remicade was my last resort drug.......that one and cyclosporine which I DONT recommend.

I used Cyclosporine twice, I liked it and never really had any bad side-effects. I had to go in the hospital for if each time but my GI gradually increased my dosage daily while I was in the hospital so maybe that is why I did not have any side effects, each hospital stay was over 20+ days and 3-6 months on cyclosporine after I was released.

I agree with you that Surgery was a better decision for me and I wish I chose it sooner.

omg cyclosporine was evil to me. That's good that you tolerated it. I never had a drug give me so many nasty side effects as that one.
Posted 12/12/2013 6:54 PM (GMT 0)
I was very scared of the cancer risks of Remicade (and 6MP, which is similar to Imuran), but I was so sick that it was either take the teensy cancer risk (and it really is teensy) or be too sick to work. I am infinitely glad that I took the risk; it hasn't been scary at all, and besides the fact that a 4-5 day cold now incapacitates me for a week (UGH), I'm very happy with the decision.
Posted 12/13/2013 2:26 AM (GMT 0)
Acupuncture offers great support for the body and has no negative side effects. Many people will get acupuncture done while undergoing western treatments because they say it makes many symptoms absent.
Posted 12/13/2013 2:29 AM (GMT 0)
watchreber,

LDN, low dose naltrexone also has almost no side effects, is NOT Big Pharma, and has great success rate; it's put me in remission.
Posted 12/13/2013 1:40 PM (GMT 0)
Thank you so much for all of your wonderful feedback! I'm going to go into my doc appt with an open mind and hear what he has to say, especially after reading positive feedback, but I also have a pretty good idea now of what I'd like to try.

I'm happy to say that the prednisone is working but I might call the nurse and up the dosage from 10 to 20 mg as it has helped with urgency/frequency/blood but it is still not formed.
Posted 12/13/2013 1:53 PM (GMT 0)

UC since 98 said...
...my GI wants to discuss starting Remicade and Imuran when I see him for my appointment next week. I've been reading about the potential side effects of both medications, including the cancer risk, and quite honestly it scares me

Remicade and Imuran are not something to be scared of. Yeah, remi and Imuran increases one's odds of getting lymphoma, but we are talking really statically small numbers here. You need to put the risk and benefits of treatment with remicade into perspective. The odds of remi helping are good 60%+ of people initially respond well to Remi. The odds of a healthy person on the street (no meds, no diseases) of getting lymphoma is 2 in 10,000 (or 0.02%). When you add Imuran to the mix at uc dosages the odds of lymphoma increase to 4 in 10,000 (0r 0.04%). Add in Imuran and remi in at uc dosages and your odds of lymphoma increase to 6 in 10,000 (or 0.06%). So yeah the odds increase slightly, but still small enough that I don't loose any sleep at night, worrying about it.

The stats above are from the "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases" document from the Crohn's and Colitis Foundation of America:
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 12/13/2013 1:59 PM (GMT 0)
Guys, let's actually pay attention to UC since 98's symptoms and what meds she has and has not tried. She's only on 10 mg of pred for one week, which has reduced the number of BMs from 10-ish per day to 1-2. Sure, they're not formed, but it doesn't sound as if blood and urgency are problems. Those symptoms definitely don't warrant Imuran or Remicade, which definitely have more serious side effects than mesalamine. I'm not saying people shouldn't use Imuran or Remicade -- I would, if my symptoms warranted it, but hers don't, IMO.

editing since I finally realized you're a she!
Posted 12/13/2013 2:04 PM (GMT 0)
Thanks iP! The problem was that when I initially started researching these drugs I found a forum for people that were on them and got lymphoma. Shouldn't have read it. But after hearing from members here and the statistics you posted I'm more openminded. Plus, I have a 10 month old crawling around- I need to get out of this flare! My son is spending way to much time playing in the bathroom! Lol!
Posted 12/13/2013 2:51 PM (GMT 0)
I always find it interesting how Big Pharma always gets bashed. Granted, they are right up their with lawyers, etc. They certainly deserve some of their bad publicity. But, as far as LDN goes (for one example), it is just the luck of the draw that they are not part of "Big Pharma". If things would have happened just a little bit differently several years ago, LDN would have been made by Big Pharma. Would it then be evil and shunned? Would LDN be nothing but a bunch of evil chemicals produced by a company who only cares about profits? Of course it would cost more than what it does now but would that have changed it's actual composition?

It's also fascinating how some of these supplemental and alternative websites, such as Dr. Mercola, bash "Big Pharma" big time when they themselves reside in multimillion dollar homes and use every trick in the book to increase their sales and profits. They literally make multimillions of dollars in profits while railing against the uncaring and evil "Big Pharma" who only cares about profits at the expense of it's cusomters. Talk about the pot calling the kettle black.
Posted 12/24/2013 12:07 AM (GMT 0)
Just a quck update in case anyone cares:)

Saw my GI today. Going to try Lialda and sulfite free Rowasa. If all goes well then I'll start to taper off the pred. Thanks again for your input everyone!
Posted 12/24/2013 11:20 AM (GMT 0)

UC since 98 said...
Just a quck update in case anyone cares:)

Saw my GI today. Going to try Lialda and sulfite free Rowasa. If all goes well then I'll start to taper off the pred. Thanks again for your input everyone!

best of luck with it!
Posted 12/24/2013 2:15 PM (GMT 0)
Remicade has been sparing my colon for almost 8 years now. Everything else failed, even steroids.
Posted 12/24/2013 3:09 PM (GMT 0)
imuran has been a lifesaver for me with zero side effects. remicade, I'd think twice about, it's very new and you can't get off it once on. id rather not be on meds at all, but its better that surgery or constant flares, best of luck.
Posted 1/1/2014 4:34 AM (GMT 0)
Well Lialda did nothing except make things worse. I started Imuran 2 days ago. Nothing to report but I know it takes awhile to build up in my system. Have not tried SF Rowasa yet because santa brought me a fissure for christmas and it has been too darn painful. Guess I wasn't on the nice list this year!

I'm currently having a love/hate relationship with pred. It is working and I'm grateful for that but the side effects suck. I have major insomnia and I look like I'm storing food for winter in my puffy cheeks. But as my GI said, your already married so who cares. My husband got a laugh out of that. Here's to hoping the Imuran works and I can start to taper.

Happy new year to all! May 2014 bring you much happiness and most of all, remission!

*Edited to include signature
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