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opinions on remicade

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Ulcerative Colitis
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Posted 7/27/2008 4:55 PM (GMT 0)

Hi everyone.  I tried a new GI doc because I had not been thrilled with how my current doc kept trying me on 5-asa meds that didn't work.  I've been on azathioprine and off and back on low dose prednisone for awhile now.  So, I had a visit with a new highly recommended GI doc this past friday, and..let's just say he was not happy with how i've been treated over the past 4 years. He immediately set me up for a colonoscopy for this coming wednesday.  He said that if the 5-asa and azathioprine is not working, then remicade may be my last option before surgery.  I wanted to get some opinions on remicade.  I guess i'll find out more when the results of my colonsocopy come back on the current severity of my disease, but i hear remicde is a life savor for some, and others refuse to use it.  I have a feeling since other meds are not working, and i can't depend on prednisone....that remicade is my last option.  I'm not sure i'm ready for surgery, but the fact that i've never gotten this under control is starting to wear on me.  So, let me know what you all think of remicade and what or maybe what not...to expect.  Thanks for any responses.

Jon

Posted 7/27/2008 6:12 PM (GMT 0)
I started on remicade back in Nov.  during my 1st hospitalization with my UC>   I had  been on very high steroids for weeks,  and was getting absolutely no relief in the worst flare I'd ever had.    After several days of being in the hospital,  my GI finally had a defeated look on his face and mentioned the S word....SURGERY.  He said that some people are ready for it and some are totally against it, and no one can tell you when its best,  only you know.   But he did talk with me about it and gave the speel.    I listened with an open mind,  but he did mention as a last effort we could try remicade.     I was open to this as well....So the next day they gave me my first infusion...and I was out of the hospital the next day.    I did so well,  that I considered myself in complete remission.     I even caught a few stomach flu bugs from my kids,  and where it used to always put me in a flare,  this time I recovered just like they did..within 24 to 48 hours.     The only issue I ever had was during my monthly menstrual cycle,  I'd get a some loose stools, and GI upset,  but would get better as the period ended.    Until this last month about July 1st!!!   It just progressed into a full flare,   and my next infusion isn't until the 31st.    So,  I have had to go on the prednisone taper...symptoms seem to be improved,  i just hope it continues.    I have heard of people that are getting remicade, having it lose its effectiveness.    I just hope and pray thats not the case for me........Remicade can be very helpful,  but I would suggest knowing the ins and outs of it before taking it.  There are serious potential side effects (just like all those meds we have to take).  But knowledge is your best tool for making a good well informed decision regarding whether to take it or not.   good luck on your journey to remission!!  
Posted 7/27/2008 6:17 PM (GMT 0)

Sorry to hear that you are not finding relief.  I know how you feel...many of us do.  I tried Remicade as a last resort about two years ago.  I have had really good results.  I felt better after my second infusion.  When I started Remicade I had a lot of reservations.  I worry a lot about the long term effects, and I would like to quit using it.  Many people think I am nuts for wanting to discontinue this since it does seem to be working, but I just do not like being on medication at all.

I saw a doctor last Friday who practices functional medicine.  Next month I will start the elimination diet along with some supplements which include heavy doses of fish oil and probiotics.  The hope is that we will find something in my system that is messing with my immune system and correct it.  If I can get to a point where I am feeling really good we will stop remicade.  It may be a long shot, but I feel it is worth a try.  I am a 34 mother of 3 young children.  I want to be here for them.  I don't want to end up with another problem down the road caused by Remicade.

This is my hang up.  Not everyone feels this way.  If you think that the benefits of Remicade outweigh the risk I would encourage you to try it.  If not, keep searching for something else you can try.  Good luck!!!

murf

Posted 7/27/2008 7:57 PM (GMT 0)
My feeling about it was that Remicade just hasn't been on the market long enough for me to feel comfortable with it. Although a lot of people have taken it (for UC, RA, and some other things), the longest anyone has used it is about fifteen years (including the trials). And it is one of the first of a family of drugs, so unlike other drugs in "families," we can't extrapolate much from the data on other similar drugs that might help figure out what its long-term effects might be. I was also concerned that even if Remicade turned out to be okay, starting to use it would be putting me on a path of "next big thing" drugs with even less history of use.

If I had Crohn's, I'd use it in a heartbeat, because surgery wouldn't have been such a clearly beneficial option. But around the time I would have had to choose, I was diagnosed with dysplasia and had surgery. I'm glad not to be sitting around wondering whether one or two doses of Remicade taken as a last-ditch effort in this last year might still have side effects years from now.

If you haven't already seen the blog about the surgery maintained by former UC patient Mark and his wife Megan, definitely check it out. It is a very accurate representation of the process:

http://ucstory.wordpress.com/

Good luck with it, either way!
Posted 7/27/2008 9:40 PM (GMT 0)
I'm not sure how to feel about Remicade. I've had 3 infusions so far and only after the 3rd one did I see huge improvements. The thing that scares me the most, as Charlotte mentioned, is the fact that we just don't know a lot about Remi. And the stuff that we do know, like lymphoma or drug-induced lupus (even in a small minority of people), scares me. Also, our body can build antibodies to a drug like Remi, so you never know how long it'll work. I am only using Remicade to help me become stronger and control my symptoms until I schedule surgery.

However, there have been many people how have used Remi for a couple of years and have done great with it. I've barely had blood and only couple stools per day since my 3rd infusion last week. Even if you do decide to use Remicade, you can still go talk to a surgeon about options--just because you talk to a surgeon doesn't mean you actually have to have surgery.

I agree--Mark and Megan's blog is something to check out. I found this link especially helpful: http://www2.healthtalk.com/go/colitis/webcasts/colitis-and-surgery-why-you-shouldn-t-wait-too-long
Posted 7/28/2008 1:26 PM (GMT 0)
Here's my take; I've been on Remi for three years and have done well and consider myself to be in Remi remission. I hardly even remember that I have UC because I'm so active. I'm just enjoying each day that I have. Heck, two months ago I was in a car accident that could have easily taken my life, so every day is a gift to me. If the time comes that the Remi isn't effective anymore, then I will consider surgery. But that's my story, and everyone has a different route they will take to remission or better yet; surgery for a cure.

Posted 7/28/2008 3:41 PM (GMT 0)
Hi. Thanks for all the responses. Let me know if anyone has more opinions. I will def. have a long talk with my doc. At this point..i'd almost rather just do the surgery and be rid of this whole thing. I've read up more on this j-pouch thing. I just don't want to be stuck with "the bag" for the rest of my life. As long as I can be guaranteed the pouch(even if i have to wear the bag for a few months), i'd jump at the surgery. I need to read up more on it. So, I have a lot to talk with my doc. about, and I should find out a lot more(for better or worse) once my colonoscopy is completed this wednesday. Thanks again for the responses and support.

Jon
Posted 7/28/2008 4:07 PM (GMT 0)
I had jpouch surgery 7 years ago, before Remicade was a treatment option. My drug choices ran out at 6mp. Had Remicade been available I would have taken it. I would have taken anything back then to gain remission. Now in hindsight I am grateful Remicade was not an option. As others have mentioned there is just too much that is not known about its long term effects. I was already worried about the long term side effects of prednisone. If I had RA or Crohn's I would do it as those diseases don't have a surgical fix. I am now healthy, take no medications and no longer have to worry when my next flare will strike.

Sue
Posted 7/28/2008 4:48 PM (GMT 0)

Jon,

I have had 3 infusions of Remicade and wasn't sure if it was working until I completely tapered off of the prednisone.  Unfortunately, when I did, it showed that the remicade wasn't a fix for me.  It was an absolute non-event getting the infusions and after seeing how beneficial they were to everone in the remicade office, I asked myself the question, "Why didn't I try this sooner and what was my major resistance????"  I think you really need to ask yourself the question," What is my quality of life like right now?"  If this treatment can give you a fabulous quality of life and give you your freedom and confidence back, isn't it worth it?  Surgery is a major step and this treatment allows you to keep your body intact.  There are risks to everything we do in life...medications are no exceptions...though if we put as much weight in the risks of doing everyday activities as we do the medications we take, just think how paralized and joyless life would be!  The benefit in my mind sooooooooo greatly outweighs the risk that it is so worth it and I would do anything to be one of the ones this drug works for.  Be thankful if it works for you, because it gives your mind the freedom to think about the joyful things you have in your life, rather than your disease.  Also, I agree with comedydork as stated above....definately check out Mark's blog of his surgery.  I was much more willing to have surgery until I actually saw him go through it.  It seems it all worked out well for him in the end, but for me, I'm not ready to trade in the problems of Ulcerative Colitis for ones that I don't yet know and can't emotionally or psychologically wrap my head around.  I'm so thankful that Mark was so frank and straight forward in his blog.  Good luch with whatever choice you make and I empathize with the situation you're faced with when your medications don't help you.  Stay positive.

Posted 7/28/2008 5:29 PM (GMT 0)
working wonders for me, there have been points in the past 5 months where I have actually forgotten I even have UC,
Posted 7/28/2008 5:35 PM (GMT 0)
I will have my TB today and will hopefully know in a week if my insurance will cover it. I feel alot better about it after talking to my mom who has rheumatoid arthritis and has taken similar medication for a long time. She has not had any problems and is very positive about it. My doctor says there is only a 60% chance it will work. I told my mom that and she said good odds! Which is funny because I heard that and I thought - this isn't going to work for me. I guess I am a glass half empty type of person:)
Posted 7/28/2008 11:46 PM (GMT 0)
Keeping my diseased colon isn't worth the risk of side effects.
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