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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Prescribed Humira Too Soon?


06-04-2015, 01:32 AM   #1
bkpop
 
Join Date: Aug 2014
Location: Portland, Oregon
Prescribed Humira Too Soon?

A little TMI to start off this post... My crohn's symptoms have, luckily, never been that bad -- I did have bleeding and a little stomach pain that went away after I weaned off of prednisone (tomorrow I'll talk to my Dr. about the possibility of being steroid-resistant since my symptoms were significantly worse while on them, then stopped a few weeks after); I know I currently have inflammation, but it is "just:" mucus, small amounts of loose stool, small/skinny solids, sometimes an in-the-moment cramping/rush when passing some solids (but no pain after), and that's basically it. *Knock on wood* I would say I've never yet had a "flare" the way others have described (intense pain, stomach cramps, inability to eat/drink, ER visits, etc.).

I was initially prescribed Delzicol almost a year ago, and nothing really changed. Besides prednisone (twice), Delzicol, and now Humira I have not been on anything else. I feel like other people say that being prescribed a biologic is a "last resort" to get their condition under control when a line of milder medications didn't work. Now I'm left wondering if my Dr. jumped the gun when my symptoms are not "that bad" and something else may have worked. I worry that if the Humira doesn't stop my current mild symptoms and/or I eventually become resistant to it, and steroids don't work for me, then what am I left with - surgery as my only option?

My Dr. didn't really give me any other choices. Essentially he drew a medication pyramid with Delzicol on the bottom, Humira on the top, and then described some "medium" drug in the middle that is suspected to cause cancer at higher rates than other meds. He then said: "we can choose this [cancer-linked] medication or we can choose the Humira, so what do you want to do?" It makes me nervous feeling like we jumped from mild medication to strong medication when my symptoms really have not become more severe.
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I recognize that I have 2 problems in dealing with having crohn's: first, thinking about food and this disease all the time plus researching various medications has become stressful to me; and we all know stress is bad for an IBD patient. So I waver between being uninformed and being stressed out with information overload. And then, when I'm in the Dr.'s office I somehow lose the ability to think critically, ask questions, and not rely on the Dr.'s last word simply because he's the authority. I just say "okay" and then have a little freak out about it later. Afterwards I wish I had at least said/asked: "I know there are not just these 3 medications out there - why Humira now, why not anything else?" [I hate to think that he's getting some kind of a kick-back for prescribing just these drugs over others, regardless of individual situations.]

On the flip-side, I read a report somewhere that claimed if patients get on Humira early in their treatment, then they might change the lifetime course of their disease for the better.

Did anyone else get prescribed Humira with relatively mild symptoms?
06-04-2015, 10:52 AM   #2
InkyStinky
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Hi there!

Sounds like your GI was talking about immunosuppresants as the "medium" drugs. They do have a risk of cancer (higher in some demographics - older people and teen/young adult males, I think?) but for most folks it's very slight. Though you might fall into a higher risk category. Did your GI mention you being at a higher risk?

Anyway, in recent years there is much more awareness among GIs that IBD inflammation is very damaging, so lots of GIs will take a "Top Down" approach - starting with Biologics (or combo: biologic + immunosuppressant).

So if you have inflammation going on (showed via labs, scopes, etc), regardless of your symptoms the best thing is to get the inflammation under control.

Does your GI have any sort of online chart/messaging system? I love being able to message my GI's office with all the things I forgot to ask at my appt!

If you are looking for good information that is "non-alarmist", check out CCFA's webcasts. I've found them to be very helpful:
http://www.ccfa.org/resources/webcasts.html
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Sabrina
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

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-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
06-08-2015, 05:47 PM   #3
DougUte
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Hi bkpop.

There is no such thing as TMI on this forum when it comes to symptoms of these diseases.

Like Inky said, many GI's are now taking the top down approach to treatment in order to avoid inflammation of the GI tract. That may be what your GI is thinking. I would ask your GI about their approach to the disease when you get a chance.
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Due to the insurance company, Humira ended on January 31, 2017.
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