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Diagnosed with UC 15 years ago........about to take Remicade for the first time. Do I need to?

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Ulcerative Colitis
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Posted 4/27/2011 12:28 PM (GMT -8)
I have had a semi-regular flare up cycle for much of the past 15 years.  All with maitenance drugs (Asacol) and then steriods during the flare-up (Prednisone).  The most recent flare-up has not responded well to steroids and won't go away!

My doc is recommending Remicade and I trust him, but it seems like quite a commitment.  He indicates that I might be on it for years.  It is just frustrating because I had been symptom free from 2008-2010 and never considered myself a "severe" case.  And I was hoping to to try for a baby in 2011/2012.

Any advice on treatment going forward?  Is it Remicade or bust?

Posted 4/27/2011 12:31 PM (GMT -8)
did you try rectal meds too? if not i would try those first.....then move on to the remicade if the steroids aren't working...I know some people have had success with imuran too...but that just takes long to get rolling
Posted 4/27/2011 12:35 PM (GMT -8)
Yeah. I used Rawassa for a while with the Prednisone. I had over 8 weeks of relative normalcy before the flare-up caming roaring back. I could go back to the Prednisone/Rawassa combo, but the side effects there (including trying to get pregnant) seem worse.
Posted 4/29/2011 10:48 PM (GMT -8)
I am in the same boat I'm going to start Remicaid soon myself. I am on
HYDROCORTISONE ENEMA now to start out. Talk to your doctor in regards to those first if that would put your mind at ease. I know the remicaid seems to be such a commitment I agree. I'm not looking forward to it in that way but I do want something that will help me stay out out of flair for even 2 weeks at this point.
Good luck :-)
Posted 4/30/2011 5:09 AM (GMT -8)
I would try rowasa enema or Cortenema. I would try at all costs to stay away from the very potent meds. Alot of us have had very good luck with rectal meds.

good luck
Posted 4/30/2011 8:33 AM (GMT -8)
I had not considered Cortenema and my doctor has never brought it up. It seems like a nice alternative to committing to a year of Remicade.

I am back on 40 mg of Prednisone for now, and the flare-up is under control. I did a TB/Blood test yesterday to get ready for the Remicade, but I think I will have to discuss further with my doc.

Thank you so much! This forum is a great resource for me. I wish I'd found it earlier.
Posted 5/2/2011 8:05 AM (GMT -8)
Remicade isnt going to make your UC go away, you will still have it, just controlled. I dont think you try it for a year and then go off of it. You stay on it until it doesn't work anymore or until they find something better!! AND I am pretty sure you can be on Remicade and get pregnant. I know women who have had multiple children while being on Remicade. I have found Remicade to be life-saving. I think steriods are much much worse both long term and short term. Good luck!
Posted 5/2/2011 12:27 PM (GMT -8)
I agree, you misunderstand if you think it's a treatment for a year. It's forever, at least until something better comes along. It is not a cure, only surgery is a cure. I am very satisfied with Remicade, I also used to flare pretty regularly and never was in complete remission.

I am hoping Humira is approved for UC so I can just give myself shots. My insurance denied it.
Posted 5/2/2011 12:42 PM (GMT -8)
I guess the "forever" part is what I find intimitating.  With long asymptomatic stretches (2+ years at a time) over the past decade, I just wonder if I need to take this next step when low dosage maintenance drugs got the job done for so long.  Do you think my disease has evolved.......meaning that my past history has no bearing on the future prognosis?

Maybe I'm in denial.  I guess I'm just trying to weigh the trade-offs of going to Remicade.  My flare ups are certainly painful and exhausting, but even at their peak I'm able to go to work, travel, socialize, etc.  I feel fortunate in that regard.  Commiting to the bi-weekly or bi-monthly infusions indefinitly is a major step.

Posted 5/2/2011 12:51 PM (GMT -8)
Everyone is different and you can't really predict what will happen next...
I was never totally asymptomatic so I was eager to try it.

It is a major commitment, but I actually look forward to seeing my new friends, the infusionist and the pharmacist!
(It's more frequent only for the first few times, then every 8 weeks after that).
Posted 5/2/2011 1:55 PM (GMT -8)
what about 6mp or Imuran? Definitely try rectal meds!
Posted 5/7/2011 7:44 AM (GMT -8)
Update:

I am scheduled to start first Remicade infusion in a week. 40 mg of Prednisone put the flare-up into remission quickly. I have felt pretty good the past week. Because my UC effects my entire colon, doctor thought the rectal steroids would not add much value.

I am mentally ready for the Remicade step, but I did have one last strategy I wanted to get feedback on:

Since I have only been taking 4 Asacol for maintenance the last few years, why not ramp that up to 9 or 12 while tapering off the Prednisone. Maybe it works to keep me in remission? And if doesn't, I commit fully to the Remicade.

Is that wishful thinking? If the 40 mg of Prednisone only gave me 6 weeks of relief last time, is upping the Asacol dosage ineffective at this point?
Posted 5/8/2011 5:37 AM (GMT -8)
I've been on Remicade since Aug 2010. At times it seems to help and at other times just blunts a medium flare down to a small one for me. Everyone is different when it comes to drug reactions and results. A few times I've felt absolutely great for about 4 weeks after an infusion and then I slowly creep back into a tiny flare. I do think it has helped my pancolitis as my upper reaches have now healed and are in remission and my only problem area's are my left and lower colon. I chose remicade because the only way I was getting a "Full" remission was with heavy doses of prednisone (80mg and up) and the side effects were just horrible. My GI Dr. said I could continue prednisone (I was like NO WAY!), have my colon removed (Again NO), or try remicade; so I went with the remicade. Sometimes I guess you have to go with the lesser of the evils. As I have gone through this I have done a ton of research like probably everyone else on here. My GI Dr. never mentioned the use of alternative tactics like high quality probiotics (VSL#3), changes in diet, or adding different supplements and natural occurring herbs and such into a daily diet. It was all drugs or surgery. I look at my remicade right now as a very good wall of sandbags during a flood, it's holding for now but for how long? I think there are a lot of other "non GI Dr. recommended" things that work and it's a matter of researching them and seeing if they might work for you.

If you do start the remicade here's a few things that helped me out: Depending on your insurance do look into the remistart program, it can save you some out of pocket money if you have to fork some over. Also bring something to do during your infusion; books, mags, iPod. If your infusion center has a WAP (wireless access point) bring a laptop if you have one and you can browse the net or connect to your job if they do VPN (virtual private network) so your 2 to 4 hours is not a total loss. Good luck with this and remember, we're all in the same boat together!

Be well, E...
Posted 5/8/2011 5:48 AM (GMT -8)
Ellen83,

Tough place to be, and the doctor isn't making it any easier for you.

In my experience doctors are very quick at putting you on all kinds of heavy duty meds, telling you diet has no effect, and supplements don't work.

Not True!! Many meds give you side effects than worth while, including if you are intolerant of mesalamine meds - more stomach pains and diarrhea. Has your doc told you about the possible side effect of blood cancer as a result of Remicade? .

I balked at Remicade - too many side efffects.

Have you considered:

SCD diet, but also: add L-Glutamine powder (15 grams) - I take mine with my protein shakes - L Glutamine is known for colonic repair. Also you could take 3 x per day: Slippery Elm Bark Powder - it is nature's mesalamine equivalent - it will coat your whole digestive tract.

And lastly, you could give some thought to trying Transdermal LDN, safe, cheap, no side effects - you can google Dr. Jill Smith studies on Crohns Patients going into Remission with LDN. You have everything to gain and nothing to lose. But don't expect your doctor to be on board, because he won't be. I've posted a link here to an earlier post on it, if you want more info: https://www.healingwell.com/community/default.aspx?f=38&m=2079694

Good luck to you, and keep us posted :)

Posted 3/3/2012 9:24 AM (GMT -8)
Thank you to everyone for their thoughts on this. I just had my 15th colonoscopy. While I was still waking up the doc was talking to me, all I heard was remicade, resection, and cancer. So needless to say I am anxiously waiting for pathology to come back and have the talk with the doc. Remicade has been mentioned to me before and because of the "long term" plan with this I have put it off. The only time I have a problem now is when I am bad with my diet, like buffalo chicken. The next day I am haunted by my choice.
Posted 3/3/2012 10:56 AM (GMT -8)
I'd try Imuran before Remicade. Imuran has been a godsend to me, I had very severe seasonal flares for over 5 years before getting on Imuran. I ended up in the hospital, pic line, transfusions, etc.
After imuran the flares come bi-yearly now and are much less serious and short in duration.
Also Imuran's safety profile is very good it's been around for decades. I believe once you're on Remicade, you can't stop taking it, with imuran you can stop any time.
It's not perfect, but in my opinion, imuran is a wonder drug.
Best of luck!
Posted 3/3/2012 11:06 AM (GMT -8)
I would try imuran first as well for the reasons that beatuc mentioned. It does take a bit of time to work from what I understand, but it doesn't require infusions. I would do the Cortenemas in the meantime. You will have to do frequent blood tests at first though w/ Imuran. We have had alot of members have good success w/ it and you can always pull Remicade out of your bag of tricks for later (gives you somewhere to go)

Good luck w/ whatever you decide.
B

PS Even though your inflammation is throughout, rectal meds will still be very helpful. I never understand why some Dr's are so hesitant to use them, they are a great tool.
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