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Should I call GI about starting humira/remicade?

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Ulcerative Colitis
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Posted 6/27/2013 6:09 PM (GMT 0)
I've been experiencing a moderate flare (with pain, tiny bit of blood as only symptoms) for about a year. My most recent scope showed a healthy rectum and sigmoid, but severe UC in 30cm of descending colon.

During this year-long flare I've tried 6mp (currently on 100mg), apriso, colozal, nightly mes. enemas, and uceris.

I am so sick of waking up and having no idea whether I'm going to experience a full day of discomfort, or have a good day, or what.

I know alternative therapies are often advocated on the forum. I currently take a priobiotic, fish oil, and l-glutamine. But I also feel like before trying SCD or something, I have to finally get this flare under control.

So, should I call GI about starting humira/remicade?

Thanks!
Posted 6/27/2013 6:23 PM (GMT 0)
Have you tried steroids yet?

Humira and Remicade are hard core. A friend of mine is on Humira for her crohns and it is working. I tried Remicade during a really bad flare, it did put me in remission but also caused kidney failure. If you are considering these, definitely talk to your doc. They have helped a lot of people.
Posted 6/27/2013 6:24 PM (GMT 0)
That is a personal decision...some people really like the biologicals and others don't even want to consider them.

I had a very good 4+ yr remission on Remicade but it stopped working last year and I recently switched to Humira but that has not worked at all for me even with double doses. Everyone is different and what works for me may not work for you.

I am in the process of switching to Simponi.

Most people will discontinue 6mp when they start using a biological due to some risk factors being elevated if you are on both meds.

I hate to even suggest this but have you tried Prednisone? it might be very effective in treating your effected descending colon
Posted 6/27/2013 6:30 PM (GMT 0)
i think it might be worth it to try prednisone and/or a steroid enema like cortifoam before going to the biologics.
Posted 6/27/2013 6:32 PM (GMT 0)
Chicago,

How about trying LDN, low dose naltrexone?

It put me in  remission, is cheap, has almost no side effects.

What do you think?

Posted 6/27/2013 6:40 PM (GMT 0)
Thanks for the replies.

I tried prednisone about a year ago when my inflammation was confined to my rectum and sigmoid colon. It had an immediate effect, but quickly lost its effectiveness despite staying at 40mg. Steroid enemas don't help, nor did uceris. So I don't have any confidence in steroids.

InSoFla, obviously, cheap, safe, quick remission sounds amazing! However, there are so many anedoctal accounts on this forum of different supplements working for different people. I don't believe LDN has been studied on UC, and it seems to me that more people receive no effect from it on this forum than not. Not that it wouldn't help me - just, I can't keep trying everything suggesting on this forum forever. I think I have to take control of this flare! I just graduated from college. I'm depressed, afraid to look for employment, and very very frusterated with my body.
Posted 6/27/2013 6:45 PM (GMT 0)
I've been on Humira since January and have seen no help from it. Steroids had the same effect for me as you explained. In only 7 months on Prednisone (worked the first 2 - never full blood free remission, though) now considered steroid dependent biologics haven't helped & only leave me scared to death of cancer or pneumonia......

UC is horrid.
Posted 6/27/2013 6:45 PM (GMT 0)
I've been on Humira since January and have seen no help from it. Steroids had the same effect for me as you explained. In only 7 months on Prednisone (worked the first 2 - never full blood free remission, though) now considered steroid dependent biologics haven't helped & only leave me scared to death of cancer or pneumonia......

UC is horrid.
Posted 6/27/2013 10:19 PM (GMT 0)
Any other thoughts, please?
Posted 6/27/2013 10:51 PM (GMT 0)
If your GI is okay with going on either of them, then I'd say give it a shot.

I don't know which one is easier or will be more effective for you but Humira is definitely on the convenient side because you can carry it around and it's DIY at home.

Maybe make some dietary changes if you think it would help according to your past reactions to food. Paleo/SCD are great and personally, I'm doing SCD.

I'm getting my Humira in mail next week on Tuesday and will be injecting myself with starting package(4 shots) to calm my flare.
Posted 6/27/2013 10:55 PM (GMT 0)
I say go ahead and see if you can get yourself on something that may finally work for you, as in remicade. It sounds like you are at the might where taking the leap to a "biologic" might be the right way to go for you. I can say it put me into remission fairly quickly when nothing else helped before that. Just make sure you know as much as you can about what you are taking before you do, knowledge is power. Good luck chi.
Posted 6/27/2013 11:18 PM (GMT 0)
Recently started Remicade (april) working wonders so far for me....
My biggest hesitation on starting it was in my mind it is kind of the last resort /option medically before surgery... (hoping i'm wrong on this... ) So I was in no RUSH to get there.
But I had no choice medically I was in very bad shape. Mesalamine not working, steroids not working... colon in too bad a shape to try and wait months to see if imuran or 6mp would help. So Remicade it was. And luckily i'm responding well to it.

My big thing would be to suggest you start looking into how you will pay for it. It can be a process to get it approved by your insurance company and or local (state, province, etc... ) drug plans..

It is a ridiculously expensive drug....
Posted 6/28/2013 3:17 AM (GMT 0)
If you are having a conversation with your GI about different medications then you might want to ask about Cyclosporine, it is probably the fastest and most effective medicine in treating a flare. I think its effectiveness in bringing on remission is around 70% within a few weeks.

I've taken it twice to deal with severe flares, it is usually given with 6mp until the 6mp builds up in your body and you can discontinue the cyclosporine.

My GI says it's like the nuclear bomb of UC medications. It takes lots of monitoring and sometimes it is given in a hospital settings for a few weeks.
Posted 6/28/2013 1:38 PM (GMT 0)
I dunno. That seems like a very dangerous drug.
Posted 6/28/2013 3:28 PM (GMT 0)
It's not taken in the same dose as the transplant patients, I think it's about a half dose and you go for weekly blood work and it is closely monitored. My GI says its very safe and effective if used correctly. Most GIs don't use it because they are not familiar with it, they will send patients to IBD specialists who are familiar with Cyclosporine.

It's been around much longer then the Biologicals and there is lots of clinical data on it. Remember that its lower doses and only taken for a few months, not for a lifetime like the transplant patients.
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