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No help from Remicade or Humira-what now??

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Posted 12/17/2007 3:02 PM (GMT 0)
mad  I used Remicade a year ago to control the intestinal inflammation but it didn't work and I ended up in ER with partial obstruction...same scenario with the Humira I'm currently on. Neither of them helps to control my inflammation, the only thing that controls it is Entocort. My GI doesn't want me taking that long term though but I don't know what other choice I have. Nothing else works for me. Anyone relate??
Posted 12/17/2007 3:29 PM (GMT 0)
Have you tried anything like 6mp? There is a new med out that is like Remicade and Humira. It's called Orencia. The commercials say that "this may be for you" if meds like remicade and humira haven't worked. Maybe your GI can put you on that?
Posted 12/18/2007 4:22 AM (GMT 0)
it may sound hokey, but have you really tried screwing with your diet? it helped me and it helps many others too. i dont use remicade any more since i dont feel i need it. read up on the maker's diet and the specific carbohydrate diet. they are intimidating but if you follow what they say you will see results, to varying degrees of course. this other dude, kasper87 i believe is his call sign on this site, has developed a diet of his own that works great for him. give him a shout out and ask for the skinny on it. you have to eat anyway, right?
Posted 12/18/2007 1:17 PM (GMT 0)
Thanks for the replies, they are both very helpful!
Posted 12/19/2007 1:13 PM (GMT 0)
You may want to look into Biogens Tysabri...i understand that they are bringing it back out for Crohn's studies.  be sure to read up on it before using...there were some issues the first time through, but it has been approved to come back on the market.  It had great results the first time out.

Posted 12/27/2007 3:46 PM (GMT 0)
To hspenser:

I was wondering why you stopped the naltrexone.

Did it work?

I can't find your comments on this on the site here!

Thanks a lot!

-Greg B

Post Edited (GregB777) : 12/27/2007 7:31:02 PM (GMT-7)

Posted 12/27/2007 4:11 PM (GMT 0)

GregB,

I stopped the naltrexone because I hit a plateau with the curative results.  It cut my average daily bathroom trips from 15 or 20 down to 5 or 6.  I stopped bleeding daily but still showed signs of clots at least once a week.  The big “D” tightened up and I started a solid output…all very positive results….but that is where it stopped.  My blood work still showed major deficiencies in key areas (thus even though things had solidified my absorption was still low) I did continue to lose weight, but at a little slower pace.  I still had major cramps and pains with each trip to the bathroom....and that has not stopped even now with Humira.

I have been out of remission with my crohns for over two years now, and I am getting dangerously close to being in crisis on my weight.  I am 6’1” and some days go as low as 170.  For me 170 is terrible…hips show, collar bones and sunken cheeks make me look like I belong in one of those fright movies.  The arthritis is worse now than two years ago. The Humira has done a good job of stopping my weight decline and I hope to level out at 180.  It has also helped my absorption….I am no longer in the anemic zone.

  I think I am one of those exceptions for medicine….so far the only thing that has worked for me is Tysabri.

 

I do not knock Naltrexone….it just didn’t do enough for me….

Posted 12/27/2007 4:23 PM (GMT 0)
For those who've run out of medication options, you might want to ask your doctor about trying total enteral nutrition (special liquid diet in replacement of normal food for several weeks to induce remission). This is a dietary treatment that has actually been validated in clinical trials (as effective as steroids in children, not as effective as steroids in adults, but can still be highly effective in 50% or more of those were willing to comply with it). It has an anti-inflammatory effect like steroids, but without the side effects. It is also highly effective in reversing weight loss. Just an idea to consider, because it isn't mentioned too often in the US.
Posted 12/28/2007 2:28 AM (GMT 0)
Thanks hspenser, for the info.
Posted 12/28/2007 3:06 AM (GMT 0)
What works for me is Lialda two tabs once a day. I used to take Asacol 4 tabs 3 times a day. With Lialda no flare ups.
Posted 12/28/2007 11:04 AM (GMT 0)
I am in the same boat as you mcleaver. I am starting to bleed pretty badly but am trying to give the humira more time to work. I was thinking about enrolling in a clinical trial if the humira doesn't work, but i'm not sure. Clinical trials sound kind of scary, and there is a chance of getting the placebo rather than the treatment. Anyway, i hope it works out for you.
Posted 12/29/2007 4:47 AM (GMT 0)

Hi jellybean -

My 12 year old son is now participating in his second clincial trial in 2 years, this time of Humira for kids.

Many clinical trials now do not use placebos when testing new meds for serious illnesses like Crohn's and AIDS. Instead they may pit two different meds against each other or two different doses of the same med. Not always of course so it is important to be clear about this when considering whether to participate in a trial.

It's also important to be clear about what the protocol is if you fail to respond to the med: how long it takes before they decide you have failed, whether they will increase the frequency or dose at that point, etc.

I would second the recommendation that anyone who has failed remicade and humira strongly consider elemental nutrition as a treatment option. It can be combined with other meds and, while expensive, can be done with OTC products now like ensure and boost so you do not have to have a doctor's prescription. In children improvement in symptoms is usually seen in as little as 2 weeks if a strict regimen is followed. This means no solid food at all - only water and the formula. Some doctors allow a small amount of chewing gum, one 8 oz serving of clear soda and a few pieces of hard candy but if you are in serious trouble with extensive bleeding and weight loss then the strict regimen is most likely the one to be recommended. It should not be undertaken without medical supervision, especially if you are severely underweight/malnourished. A few children are able to attain and maintain remission on partial elemental feeding but they have usually started on complete elemental and then gradually added foods back in, avoiding foods that appeared to make symptoms worse.

My son has done 2 rounds of elemental feeding in the past 2 years via NG tube. Both times his CD improved but he got sick again as soon as he started solid food so we have ended up on both 6-MP and Humira.

Patricia


Post Edited (rlsnights) : 12/28/2007 10:00:46 PM (GMT-7)

Posted 12/31/2007 2:18 PM (GMT 0)
confused
Well, I saw my GI on Friday and talked to him about my obvious Entocort dependency...I don't know if all Dr's are like mine but after talking to him for about 5 minutes he said "what do you want to do?"...I may as well write my own treatment plan cuz he just scratches his head and does what I tell him to do, in this case "we" decided I would continue Humira treatment and 6mg Entocort daily, since that combination seemed to be working well for me. I also told him that I thought it was time for another colonoscopy...he checked my record and saw that I hadn't had one since March 2006. Why is it that I had to tell him what I wanted/needed??? Isn't it the Dr's responsability to make sure I get a regular colonoscopy performed? My GI pretty much follows whatever treatment plan I tell him I want...how wierd is that?? I like him, he's a very nice GI but I have been seeing him as a regular patient for about 3 years now and he still has to go over my chart every single appt. to "refresh his memory"...he never even remembers what my condition is...he asks me at every appt. I know he sees a lot of patients but come on...
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