HealingWell
Search Close Search
☰

What's after Remicade

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/11/2012 10:42 AM (GMT 0)
tried all the ASA's, Rectal Meds, and now on second dose of remicade and nothing so far...whats the next step...not sure if i am ready for surgery...
Posted 11/11/2012 10:47 AM (GMT 0)
have you tried steroids or immunosuppressants?
Posted 11/11/2012 11:00 AM (GMT 0)
steriods not immunosuppressants
Posted 11/11/2012 11:03 AM (GMT 0)
I would think you could try some immunosuppressants such as Imuran or 6mp. If they don't have any success, you can try Humira.
Posted 11/11/2012 12:47 PM (GMT 0)
How long did they say it could take for remicade to work?
Posted 11/11/2012 1:37 PM (GMT 0)
Remicade is different for everyone but 3-4 infusions which is about 2 months. And yes next step is prednisone with imuran from the looks if things.
Posted 11/11/2012 1:41 PM (GMT 0)
Don't put the horse before the cart just yet! :) Give it more time. For some it can take several infusions before they can tell if its going to work or not. I noticed a difference after my 3rd but it wasn't until my 4th that I started feeling the change.
Posted 11/11/2012 1:48 PM (GMT 0)
What are your symptoms right now? It seems like they would have tried Imuran before Remicade.
Posted 11/11/2012 2:58 PM (GMT 0)

garylouisville said...
What are your symptoms right now? It seems like they would have tried Imuran before Remicade.

Good catch. Seems fishy to me. Sounds like a certain GI gets benefits for prescribing Remicade.

Thought I was told Imuran takes 3 months to fully start working. Still I would have expected the prednisone and Imuran or some other combo.
Posted 11/11/2012 3:42 PM (GMT 0)
If you can hang on there is a drug in trial now that is suppose to be great especially for people who failed Remicade. vedolizumab. 45% remission rate for those failing other biologic treatments. Google it, there is a ton of info. Looks good to me,and targets gut inflammaiton, so less side effects.
Posted 11/11/2012 4:50 PM (GMT 0)
Diet, Worm therapy, Fecal transplant, Humira, 6mp/imuran, Methotrexate, LDN, Clinical trails...

It really depends what you're willing to try. There are lot of options. If you look at the resources thread, there is a post in there that explains a lot of the medical options & the alternative treatments. It may be useful to you.
Posted 11/11/2012 5:11 PM (GMT 0)
Give Remicade a good shot if you can. I'm about 9 months into it (I think 7 infusions), and my life isn't perfect... but the Remicade has helped. I have not seen blood in months.

I cannot eat whatever I want at all though, and I still have urgency sometimes. But, after a couple months my doctor did a scope and determined that the Remicade was doing it's job as far as ulceration/inflammation was concerned. He thought I might have IBS issues as well.

At one of the first few infusions my infusion nurse told me sometimes it takes a half a year before things get significantly better. It depends on the amount of active disease at the time you began treatment, to some degree. If you were very sick, it's going to take longer to heal.
Posted 11/11/2012 6:49 PM (GMT 0)

turnpkegates said...
tried all the ASA's, Rectal Meds, and now on second dose of remicade and nothing so far...whats the next step...not sure if i am ready for surgery...

You have to give the Remicade at least 5 doses to work. If nothing happens after that then chances are it isn't going to work. Remicade was my final straw....when that failed I had surgery and I wish I had done the surgery sooner rather than wasting my time and enduring more suffering. Good luck.
Posted 11/11/2012 8:14 PM (GMT 0)
     I felt terrific after my first dose of Remicade, same after the second dose, BUT...I was still on prednisone.  By the time I was ready for my 3rd dose I was off the prednisone.  Two days following my 3rd dose all my symptoms returned....bleeding, urgency but with nausea (which was something new for me), cramping.  My surgeon said I had built up antibodies to the Remicade that fast!  I gave Humira a shot for three months, but still no change in my condition.

     If you are still hesitant about having surgery then give Remicade a few more tries.  I was shocked my GI took me off it so soon since he was pushing it for two years before I finally gave in.  I am surprised your GI doctor didn't place you on 6MP or Imuran before Remicade...or did he?  Maybe I have you confused with someone else..lol.

Posted 11/11/2012 9:28 PM (GMT 0)
Interesting, here where I live the GI's try Remicade or Humira as a last resort, not before trying immunosuppressants and steroids...those are typically tried first.
Posted 11/12/2012 7:52 AM (GMT 0)
Same here pb4. Apparently Remicade is my last hope before surgery. Although it again it may also be a GI preference issue. Btw here for me is Canada.

Also none of my GIs really mentioned diet too much either I had to figure that on my own.

Turnpkegates have you tried a UC like diet? It is unclear from your post it may just seem like youre expecting the meds to do all the work. Combos of the two are what keep me going.

Post Edited (Madcat25) : 11/12/2012 12:55:43 AM (GMT-7)

Posted 11/15/2012 9:34 PM (GMT 0)
i am feeling just as bad as ever...lots of urgency...less blood but still some...when would i start feeling better...took me so long to finally agree to take this and i thought it would really help...after 2nd infusion i still feel pretty crappy
Posted 11/16/2012 2:12 AM (GMT 0)
The third infusion may be the magic number for you. Its not uncommon for it to take a while to kick in. Try to stick it out. I went for 6 infusions before I threw in the towel. Good luck to you.
Posted 11/17/2012 6:59 PM (GMT 0)
I just had my 3rd infusion and my gi lowered my 6mp from 125mg to 75mg. some days are perfect, others are not so perfect but i've been lucky to not have any major symptoms for a while. I can leave the house every day lol.
Posted 11/18/2012 3:00 AM (GMT 0)
Regarding treatment protocol, my first GI gave me the option of either 6MP or Remicade after I failed prednisone, and summarized the major differences as oral vs infusions! So definitely not an unheard of progression of care.
Posted 11/18/2012 11:15 AM (GMT 0)
When I was diagnosed with pan colitis I was first put on prednisone 60 mg daily as well as mesalamine but I still had uncontrolled symptoms out the ying yang! Then azathioprine was added as the but it took months before I noticed any improvement. Remicade was added several months after azathioprine was introduced, but that was the only infusion of Remicade that I had ever received because eventually the azathioprine had started to work. I remember after that it took 6 months or so to taper off the prednisone. That was over a decade ago.

I also remember that a few years after being in remission, I decided to discontinue the azathioprine because I wasn't having any symptoms. I thought my UC went away all by itself, but that was a big mistake. I landed back in the hospital with left side colitis again. I started taking the azathioprine again and my UC has been controlled ever since.

I am very happy with what azathioprine and mesalamine has done for my UC, although I still have to deal some of the other problems common in UC including arthritis. It sucks getting old. Currently, my diet is not restricted in anyway, I can eat what ever I want without regard to Ulcerative Colitis. However, for the most part, I stay away from fast food restaurants only because it's too easy to gain weight if you eat that stuff. I eat lots of raw vegetables and fresh fruit every day. I can eat the spiciest Thai food and wash it all down with beans and raw broccoli without having any GI problems, however, my wife has a bigger problem than I do with that combination.

Immunosuppressants worked wonders for me, you might want to give them a try, I hope they work for you as well.

good luck
Posted 11/19/2012 5:46 AM (GMT 0)
I have swollen lymph nodes in my neck right now but i also have allergies and dripping in my throat...is this from allergies or remicade?
Posted 11/19/2012 6:37 AM (GMT 0)
That sounds like a get over to see a doctor issue. The Remicade lowered your ability to fight infections and you may have gotten something nasty. I am unaware of your allergy situation but it still be best to check for infections.
Posted 11/20/2012 6:08 PM (GMT 0)
Try Metagenics, UltraInflamX Plus 360ยบ. I take this, and Asacol (although I only take Asacol for lowering my prostate cancer risks). I did the steriods etc and this UltraInflamx works great. I have blood now and then in my stools but I live a normal life now and will never take a biologic drug -- the results versus side effects are not worth it (see FDA success rate vs placebo's -- barely better).

I see my specialist for a butt scope next week and he won't be happy I didn't bother taking his Imuran/6MP etc but I feel great and will put up with a little flare here and there. Sure he wants me to try and get a window of pure healing but I have had this 20 plus years now and so far so good (one bad year where I did the Pred, Imuran etc before I said screw it and went to the magic powders).

Can't wait for 2013/2014 for the new cures -- bring on the worms!
✚ New Topic ✚ Reply