Concerns about Humira

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Joined
Sep 20, 2012
Messages
1
Location
Wichita,
Good Morning!

My name is Kelli and I was diagnosed with Crohns in 2006. I recently started Humira, as my condition is pretty severe. I am having my second surgery for fistulas tomorrow. Monday marks the 4th injection. I know that the medicine takes awhile to begin working. However, I am been a little mess ever since I began taking it. Here's the problem: I took Remicade for about a year in 2006. I went off of it and a couple years later, began taking it again. During the 3rd infusion, I had an allergic reaction and went into anaphylactic shock. Obviously, I discontinued my treatment with Remicade, and all other medicines on that day. Now, fast forward to the present, and my doctors feel that because I am experiencing fistulas, Humira is warranted. I don't like the medicine. I haven't had any side effects. However, I am terrified all the time that I will have an adverse reaction. I have shared my concerns with my gastro and his nurses. They all tell me that that there is no research indicating a cross allergic reaction with both Remicade and Humira. Basically, the answer I am getting is, "We don't know."

I am a 32 year old single mother. And I want to feel good about my treatment. I am still very much on the fence about this med. On the first day of my injection, I had pretty much talked myself out of this choice of treatment. My doctor's nurse literally cornered me and said, "This disease is going to kill you. So you either take a leap of faith with Humira, or you continue to be sick and eventually, it will get the best of you." I feel like I have no other option and I hate this situation.

I guess my goal in posting this is to really reach out and find anyone who might have experienced what I have in relation to the allergic reaction with Remicade. I am aware of the biological differences between the meds, and the way the are administered. I know that with Humira the chances of a reaction are less likely. It still doesn't make me feel reassured!!

Thank you for listening to my rant!

Best,

Kelli
 
Hello Kelli and welcome to the forum.

I am sorry you are in this tricky situation, I can understand your concerns and it is a shame that your GI team cannot be more supportive of where you are coming from :( I have not been on this med myself so could not advise about it but we do have a sub forum dedicated to this if you would like to have a chat with the folks here: http://www.crohnsforum.com/forumdisplay.php?f=59.

Also do check out our abscesses and fistula's sub forum just in case there are alternative treatments here that you can discuss with your doc: http://www.crohnsforum.com/forumdisplay.php?f=76. One thing I would say is they are still taking such a poor attitude towards how you feel then perhaps a new doc/nurse is in order.

AB
xx
 
Kelli, I just had a conversation with my GI this week re: Humira. I too have been on Remicade in the past but it just stopped working for me. I am having a flare now and we are not sure that the steroids, cipro and methotrexate is going to do the trick so we discussed Humira and the differences in that and Remicade. He believes that with methotrexate "on board" there are less problems with antibodies in regards to the Humira. I don't know if that is something you can ask your GI about. Hey, anything is worth a try!
 
Hi Kelli and welcome to the community! I can understand your concern about Humira, that must be scary. :(

Angrybird covered the directions to other areas of the forum so I thought I'd bring up a couple ideas/thoughts:

1. Do you think you'd feel better if you were given an epi-pen to carry around in case of a reaction?

2. Fistulizing disease is indeed pretty serious as you mention. Would you like some thoughts on ways you might attack it from all angles in addition to the Humira?

We're here for you :)
 

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