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To go on Humira, or not to?

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Ulcerative Colitis
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Posted 3/24/2015 4:49 PM (GMT 0)
Hi everyone,

Need help deciding what my next treatment option should be.

I've been on lialda for quite a while, which helped but was definitely not controlling my symptoms sufficiently. I began a 50mg dose of imuran, which was working pretty well to control the remaining colitis symptoms, but it gave me pancreatitis and I am not supposed to take azathioprine ever again. 6 mp may be an option in the future, but it is likely it will be a last resort because of the possible pancreatitis side effect.

My insurance did not cover Humira, so my doctor enrolled me in their patient assistance foundation in which I am able to get Humira for free for a certain amount of time.

Being that I am unable to take imuran to delay the development of antibodies to Humira, I don't want to take Humira prematurely unless I feel I need it.

My symptoms are currently that I am going 2-3 times a day (been having several days where I only go once), the consistency is much thicker than its ever been since I was diagnosed. No fevers. No weakness. Feeling pretty normal, other than random pains here and there. I'm only taking 4.8 g of lialda, VSL#3, and vitamin A+D supplements every day.

While the lialda itself was helpful but not totally working, adding the VSL#3 and vitamins A+D back in (I am deficient in many nutrients now, according to my labs) seems to be really controlling my symptoms thus far.

My dilemma is that I am getting these shipments of Humira for free and I am unsure if I want to actually use them at this time, knowing that once I develop antibodies that I am unable to use Humira again.

I don't know what to tell my doctor, because he seemed pretty annoyed at me that I opted not to call Humira's program while I was on the imuran because I was doing well on it for a while. They did take a while to get me on the program as well, so I don't want to seem like i'm throwing away the opportunity...but I really don't want to take Humira unless I feel I need it. I received my first shipment last friday and have yet to use it because I actually want to see if my current regimen will keep me stable for a while.

Sorry for the lengthy post. Any thoughts on this? How should I approach this with my GI?
Posted 3/24/2015 5:29 PM (GMT 0)
I know you know yourself best but I would hope your doctor has your best interest at heart and that's why this line of treatment was recommended to you. Sometimes we have to put our fears aside and trust our doctors. Good luck with your decision.
Posted 3/24/2015 5:50 PM (GMT 0)
I do trust him, and i'll try to explain my concerns to him, but my biggest issue is that I want to delay surgery as long as I can and without imuran, I don't know if I will develop antibodies and will be unable to use humira again. I would willingly use it if there wasn't that risk of developing immunity to it, but I feel that with one chance to use it, I would want to use it when there is a real need to.

I do have some active inflammation, so maybe it would be wise to use it now.
Posted 3/24/2015 6:08 PM (GMT 0)
Antibody development is a lot less likely with humira than remicade. As himira is one hundred percent human sourced.
Posted 3/24/2015 7:07 PM (GMT 0)
use it -
Posted 3/24/2015 7:55 PM (GMT 0)
You're going mostly once/day and sometimes 2-3 times/day but they're not quite formed enough yet? Is that the gist of it? If so, why not try using fiber supplements daily (or eating more fiberous foods in your diet daily if you can handle eating them) to help form things up? You're frequency seems quite low for flaring, my CD is in remission due to Humira but I go way more than what you go in a day due to my IBS.
Posted 3/24/2015 7:58 PM (GMT 0)
From the way you've described your symptoms, I'd personally try to find other alternatives before going to biologics

Your GI has no right to be angry with you, your concerns are very valid, so don't worry about that side of it
Posted 3/24/2015 10:02 PM (GMT 0)
I wouldn't take Humira, I would look into laparoscopic j pouch surgery. But if you are only going 2-3/day with no blood, pain, urgency, diarrhea, constipation, tenesmus, nausea or night time BMs, etc, then I'd say try starting a strenuous exercise program and some medical marijuana :)

Post Edited (fightUC) : 3/24/2015 4:05:34 PM (GMT-6)

Posted 3/24/2015 10:06 PM (GMT 0)
I've been on remicade for a year and a half and (knock on wood) no antibodies. I've heard that how your body reacts initially shows your chance of antibody development. For example, I have never had any side effects on remicade, but some people have experienced headaches, nausea, skin rashes, etc and supposedly those are the people who tend to develop antibodies. I am also unable to take Imuran by the way.

I agree with iPoop though that it's less likely for people on Humira to develop antibodies.
Posted 3/25/2015 1:38 AM (GMT 0)
Ok something rarely mentioned these days but some used to use Cellcept as an alternative to AZA, also low dose AZA + allopurinol combo.

Also i would try rectals if i were you i.e 4gm mesalamine enemas, budesonide enemas..etc

other less sane but might be a viable option (depending on how bad your inflammation is) :

- Omega3,Aloe Vera, Boswellia supplements
- Nicotine
- LDN
- bupropion (anti-TNF)
Posted 3/25/2015 2:34 AM (GMT 0)
Your symptoms sound pretty good! Going once a day....OMG I wonder what that's like:)

Perhaps I'm missing something but what's the logic in prescribing a biologic and why now?
Posted 3/25/2015 6:03 AM (GMT 0)
Thank you all for you input, it definitely helps to know that I have much less of a chance of developing antibodies to Humira.

I think I will continue to take what i'm currently taking and see how I fare. I can more openly talk to the nurse practitioner in my GI's office than I can talk to my GI so i'll tell her about all this and see what she thinks.

For those asking why biologics were being considered: because in the months leading up to this, I was in a pretty bad, debilitating flare up and my GI thought I was already on Imuran due to miscommunication (i'd say it's my fault for not being clearer).

Now I seem to have mostly gone out of that flare, but I think my GI wants to suppress the inflammation as much as possible. I think i'm more willing to go along with that plan if it will help induce a really good remission since I know now that the chance of developing antibodies for humira is a lot lower. My GI did not tell me that, he said they give imuran to lower the chances of it happening, but did not inform me that it was a human derived protein with a much lower chance of that happenign.

Anyway, I appreciate the input greatly. Very glad there are lots of knowledgeable folks here.
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