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Posted 10/19/2011 4:13 PM (GMT -5)
Hi all! I have been on humira 7 weeks.

I have had some improvement. And some days better than others. Still on my best days I am going 5 times. I usually only have urgency in the mornings. Still dealing w/ light bleeding and lots of gas.

I saw the PA at my GIs last week. She said I should have seen a drastic improvement at this point. So she has me now doing weekly shots.

I am still doing Cortifoam 2-3 times a week.

The humira shots are not bad at all. I have the pens. It hurts for literally 2 seconds and then it is over. I occasionally get a site reaction but 2 benadryl stop the itching.

The only side effects so far (knock on wood) are extreme fatigue. The PA said it was a combo of the humira and active disease.

I go back the second week of November to meet w/ both the PA and GI. I'm trying to stay positive. Some days it is hard!

Thanks for listening!
Posted 10/19/2011 8:42 PM (GMT -5)
Hi pink1,

How's your b12 lvl from your recent blood work? When I used to be on Humira, my GI wanted me to take B12 shots but mine was in the normal reference range so I never took one.

Maybe the fatigue is the disease + Humira + low B12?

The shots stung so badly for me lol. I used to be more scared of getting the Humira shots more than riding the King Da Ka at Six Flags.

Wish you best of luck.
Posted 10/19/2011 11:25 PM (GMT -5)
I've been on humira since February now and after a rough few months ( you can read about it in one of my posts) I am feeling pretty well. Still on a limited diet but that's expected. I take the syringes so I can put it in myself at my own pace. I talked to my GI about getting weekly shots and he said "not without an act of congress". How did you manage to get that from your GI?
Posted 10/21/2011 1:26 PM (GMT -5)
jleath13,
My doctor doesn't want me to do the weekly Humira shots either. I've asked him twice, and he said "absolutely not." I am trying to taper off prednisone and I seem to be re-flaring, so I'd like to do Humira once a week, just until I get off prednisone. I'm thinking about making an appointment and insisting on trying it once a week, but I have a hard time doing things like that.

Has your doctor told you why he doesn't want you to do it once a week? My doctor is concerned about an increase risk of infection because I contracted a parasite while on Humira (I have pointed out to him, however, that I believe that was an anomaly, as I was in the wilds of Alaska and drank some clearly unsafe spring water).

From reading the chrohn's forum, it seems like a lot of people are taking it weekly, and the Humira brochure even indicates that you might have to take it weekly.

Have you thought about being more insistent?
Bridget
Posted 10/21/2011 2:16 PM (GMT -5)
I did a ton of research and lots of people do weekly for various conditions. The pa said my risk of side effects would not increase going to a weekly dosing.
Posted 10/21/2011 2:21 PM (GMT -5)
Pink1,
That is my feeling also, but my GI, who otherwise I like very much, is pretty resistant. Do you happen to have links to any studies, etc. that I could show him?
Thanks,
Bridget
Posted 10/21/2011 4:06 PM (GMT -5)
pink, I wish you were having better luck with Humira. 5x a day isn't terrible but I guess it's not considered "normal". Hopefully you can get some relief soon. I am exhausted too. I think it's just a result of inflammation - sounds like that's what the PA thinks too. I wish there were a magic energy pill we could take.
Posted 10/21/2011 4:33 PM (GMT -5)
Aw thanks! I'm trying to stay positive. It is just so hard! My hubby, parents and friends say to me daily "it is going to work!"

Yesterday I only went twice and it was formed no blood. Great day! Today though I had a bad morning of 5 times in a row. Ugh this disease is so frustrating!

If you find those magic energy pills will you send me a case ;)
Posted 10/21/2011 5:15 PM (GMT -5)
Are you sure the fatigue is from the humira and not the azathioprine? The reason I couldn't take aza was because of nausea and fatigue, so my doctor switched up and put me on humira. I wouldn't be able to take both at the same time, but I imagine the side effects are tough to deal with.

I can't tell if the humira is working for me or not as well. I've been on it for 4 months and I haven't seen any noticeable improvement from when I first started it.
Posted 10/21/2011 5:37 PM (GMT -5)
I've been on the aza for 6 years. But you are right it could be a combo of the two together.

Sorry the humira is not working for you.
Posted 10/21/2011 7:28 PM (GMT -5)
Bhb,

I am doing well on the bi weekly shots right now. But earlier I was struggling earlier and asked him about it. He just said with the insurance company it would be impossible to get it approved.
Posted 10/21/2011 9:08 PM (GMT -5)
Jleath,
Thanks for your response--I hadn't even considered whether my insurance would object to weekly injections. I guess I'll have to check on that if I can get my doc to agree.
I'm glad you are doing well on the every other week injections!
I hope you have continued success with the Humira.
bridget
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