Humira working or not?

[Ronald]

Hello!

I started Humira back in September and after the 2 loading doses, I felt great and for a couple of months after that continued. I managed to get off pred with minimal symptoms. In December symptoms started to return, mainly fatigue and loose BMs and losing blood now and then.

It could quite possibly be down the stresses of Christmas, the food and drink - but you'd think if I was in remission or anywhere close that that wouldn't affect me so much, right?

I see my GI in March, so I plan to bring this all up then. I'm wondering if maybe weekly Humira could work better for me and perhaps a higher dose of 6MP to help it along. My IBD nurse NEVER gets in touch with me if I call, so I won't bother trying again.

Could I be building antibodies against it? It seemed to work initially. I think I might TRY make a call tomorrow, I start work on Monday, so I'd like to get back into a steady 'remission' like state.

Lewis

 

[DavidL118]

I've been one Humira for a few years. My doctor put me on it when it was still very new for Crohn's treatment. This was around 2007. So far this has been the most stable my condition has been. Before humira, I had abscesses and fistulas and when I was much younger, I was underweight. Since I've been on Humira, I have not had any of that happen again. The reason I bring this up is because I've had a lot of experience with Humira. It really has changed my life for the better, at least for the past 7 years or so.

As far as your questions, I used to be on an 80mg once every two week schedule, but usually towards the end of the 2nd week I'd start feeling run down and have more painful BMs. After I took my shot, I'd feel better. My dr changed my injection schedule to 40mg once a week to kind of spread it out more after I told him this. This seemed to help. Perhaps ask your doctor if tweaking your shot schedule will help.

I will say though, even on Humira I still have loose BMs and fatigue. But both are not nearly as bad as I was before Humira. Fatigue wise I still get through my day on about 6-8hrs of sleep and I may have 2-3 BMs a day. But both are more dependent on how much energy I exert and what I eat.

As far as the stress of the holidays, I think it's possible. I mean, the stress form the holidays affects the health of non IBD people as well. I know that even on Humira, the more stress I have, the more it exacerbates my symptoms, particularly stomach pain and fatigue.

 

[Pilgrim]

We're new to Humira, but it's working well so far.

What I'm wondering though, is that wouldn't loose BM's, fatigue, a little blood - even if it's better than what you dealt with before - wouldn't it indicate inflammation? And in that case could you still call it remission?

I would try tweaking the dose, and also pull your diet back into whatever usually works well for you.

We combine the Humira with a 50% enteral nutrition. I wonder if using enteral nutrition would work for you just to get you back to where you were with the Humira?

 

[Polaris]

I would ask your doctor if you can have the antibody blood test done. Here is the info (if you don't already know about it ):
http://www.anserifx.com/about.aspx

I was on Humira for over a year, but my symptoms started coming back after about 9 months. I finally learned about the test last month, and unfortunately came back that I have built up antibodies. I would see if it's an option for your case.. I definitely went way too long thinking it was stress or other things, not realizing the med just wasn't working anymore.

 

[Gerry96GT]

Worked for me best when I started humira but it seemed it worked not as good as time went on. I ended up stopping humira because I kept getting sinus infections (which I still do). I stopped it for 2 months. And just last week started loading dose again which made me feel better right away. Maybe cycling it did the trick for me. Mind you I was not bleeding. If your bleeding and your app isn't till March then I'd call your GI for a sooner app asap. What's your hemoglobin at now?

 

[Ronald]

Thanks for the replies! Having a blood test tomorrow. The BMs I'm having are more solid now (you really wanted to know that I'm sure!) but I'm still feeling really fatigued.

Obviously I appreciate my symptoms aren't as bad a they were BUT this must indicate that I have active inflammation, which isn't good at any level of severity. If you're not in complete remission then damage is being done and you are at risk of further complications.

Lewis