Humira failing.. Any suggestions?

[lotte26]

Hello!
I'm charlotte, I've had crohns since I was 13 (21 now).
I've been on lots of different treatments, all of them seemed to work for a while then I seem to grow immune to them or something. Ive been on azathioprine, pentasa, methotrexate and am currently on humira. Several years ago i developed several fistulas and have had a few surgeries for them. I've been on humira for the past year and at first it was a miracle drug for about 5 months, I was on fortnightly dosage of 40mg. Then the symptoms started breaking thru again, I convinced my doctor to put me on a higher dose, and weekly humira seemed to do the trick. About 3 months ago the dr wanted me to go back to fortnightly so I unwillingly did. Then my symptoms popped up worse again and I went back to weekly. Since then the weekly doses just haven't been working that well. I usually get really painful at night. I recently went to my surgeon in chch to get a colonoscopy and to check out my fistula. It was weird as I came to the dr told me my crohns was still active and barely being controlled and showed me some pix of it in my large intestine ( I never had it in my large intestine so bad before) and he said he couldn't get thru to the small intestine because it was too small and swollen. Anyway I am so confused right now as I am not sure what to do, my awesome doctors live in the south island but I am currently in the nth island and have had two gastro's so far and the first one was horrendous and insulting .. Just a horrible person and my current one is un organized, old and fuddy duddy, rings me up and gets angry at me (long story but he is the idiot I promise), and is rude.. Plus he has never actually done anything for me except prescribe me my humira on another drs suggestion. Anyway I am looking for a new dr in welly but it's a lot harder than I thought. Anyway I am not sure what to do. I have some LDN that I got before the humira I was on that for about a month but I was going thru a terrible flare up so I don't think it helped at that time. Can you go on humira and ldn at the same time or do they react with eaCh other?

 

[lotte26]

Actually.. Are there any other drugs you can go on after humira? I'm so damn confused as to what to do

 

[beth]

Well, there are other biologics; cimzia, infliximab/etc. Or other classes like azathioprine/6mp, methotrexate which are well worth trying and I'd be surprised if your consultant had not tried these first.

 

[David in Seattle]

Charlotte - Sorry you're going through such a bad time. Humira and Naltrexone are entirely different types of drugs. One (Humira) works by slightly suppressing the immune system to reduce inflammation, while Naltrexone is an opiod antagonist, and works to block the action of opium-like compounds in the central nervous system (this is why it's used for treating overdoses of heroin and other opiods). I would be very surprised of there were any kind of interaction between the 2 drugs, especially at the dosage generally used for LDN. You probably know LDN is considered "experimental", so getting a doctor to go alone with the 2 may be a challenge. But, if your doc already gave you LDN once, it's sure worth a try!

Cimzia, a newer Humira-like drug, may be an alternative to Humira, but I don't know if it's available in New Zealand. BTW, how often do you take the Humira?

I hope you feel better soon :thumleft:

 

[My Butt Hurts]

Hi Charlotte!
The same thing happened with my with the Humira. It worked amazingly well, but then quit after 4 1/2 months. My insurance refused weekly shots though. I have now been on Remicade (infliximab) for 2 years and am in a fantastic remission. Maybe you could try Remi?
People mentioned to me that it wouldn't work because it is so similar to Humira, but it sure is working! Remicade has also kept my fistula from acting up this entire time. I am dreading once it wears off, but I am wishing for a few more good years and then hopefully there will be something new by then.
Good luck with your decision.
MBH

 

[aliciars]

My doc keeps talking about pairing humira with Imuran. I think that's the next route we are taking. So maybe that's an option, since the Humira was working, maybe it just needs a helper now??? I have no idea, I'm just letting you know what my doc and I have been talking about trying for me.

Hope you find some relief.

 

[tpd320]

I was on Humira for about a year. First, one dose every two weeks then one dose every week. Just didn't work for me. Doc put me on Remicade/Imuran. Have been in remission since. Had the colon checked back in Oct. No signs of crohns that she could find. Hope this stuff keeps on working...

 

[hopeful]

I had severe deterioration induced by Humira - it was supposed to close fistulas, it made mine worse than they ever were.

In any event, there are other drugs. Some fantastic rapid responses have been observed in several studies with intravenous immunoglobulin. Only problem is insurance unlikely to pay for it and it is EXPENSIVE - like several thousand dollars per series of treatments. Some patients need to repeat it (at a lower dose) every month.

About the LDN - you can ask that question on the website ldnscience.org - it may have already been asked on the Q & A page there, i didn't check.

Blessings

hopeful

 

[Nytefyre]

Humira quit working for me. I was on Ustekinumab, a trial drug also used to treat psoriasis. Next up for me will be Cimzia, after I clear up the C Diff. Maybe Cimzia?

 

[stefan]

Charlotte, has your GI discussed the possibility of using combination therapy, eg Humira in conjunction with either azathioprine or methotrexate?

The benefit of this is that there's evidence that the effect of a TNF inhibitor (eg Humira) combined with one of these immunosuppressants is considerably greater than the sum of the parts.

I'm on Humira + methotrexate and doing great, though Remicade + methotrexate simply didn't cut it after the first few infusions, and neither Remicade nor Humira have increased doses covered on the Australia PBS

You might be able to get in on a Cimzia or Vedolizumab trial if you're lucky, there are quite a few in progress around the world, including here in Australia. I know a few people here on the Vedo trial that have responded very well when Remicade and Humira failed.

Best of luck,
Stefan