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Hopeful!

rachelravenrachelravenMember
So my dear little one reached clinical remission of her indeterminate colitis with her first two loads of Humira and oral methotrexate (MTX). She's 11, and was back in school the Monday after her 3 shots of Humira on the previous Friday! NEVER had I ever reached remission as quickly as she did, with my old therapies back in the 80's! (those being steroids and sulfasalazine)

We go to one shot every other week starting this Friday, and con't the MTX every Saturday (they tell me that for IBD, they are being way more aggressive these days, and want remission quickly on these little folks... plus, she's poised for puberty, and I want her to get there as normally as possible (I was puberty delayed as a kid, because of my UC). The MTX is because they are finding that immunomodulators given tandem with a biologic helps the body not to make antibodies against the biologic, thus having a longer run of good use with it.

I just want to say, while I'm still shaken over it all and adjusting, the KID is doing great! Her arthritis is under control, she can run and play and jump now (hallelujah!), and her first flare up of IBD was controlled within 10 days of it starting.

Fingers crossed my girlie won't ever have to have bad flares like I did, or big ginormous surgeries like her mama.
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Jan DollarJan DollarModerator, RN, retired
Fantastic news Rachel! I also wanted to mention that if she tires of the shots every other week or if she finds that they sting too much, she may want to consider Simponi. It has been approved for UC and I found it better for me, both in effectiveness and for my lifestyle. It does not sting during injection like the Humira did, and it is once a month instead of twice a month. This made much more convenient for travel purposes. I found that I had to take the Humira weekly (probably due to antibody formation, I suppose). Granted, I did not take methotrexate with the Humira, and still don't.

Anyway, I just wanted to let you know that Remicade is not the only choice if Humira does not work out in the long run.

Fingers crossed that this is a long lasting remission!

Jan Big Grin
Jan DollarJan DollarModerator, RN, retired
Rachel,

First, I didn't actually edit your post. I just accidentally touched the edit icon on your post while using my iPad. Sorry about that!

I started with Enbrel for my arthritis because it was the first biologic approved for spondylitis. It was not terribly effective for me. I started Humira as soon as it was approved, and it was MUCH more effective for my arthritis, plus it improved my pouch function.

Jan Smiler
rachelravenrachelravenMember
Her dad uses Enbrel for his psoriatic arthritis, and has had excellent results.

But yes, Humira is working great for her now. I could cry, because she was able to go snowboarding twice already, since all of this happened, and didn't come home or wake up the day after in arthritic pain, walking like a little old lady. She was pain free. And she's only going to the bathroom once a day, formed.

She has no involvement at this time but in her colon... it only showed up in the top layer of the colon... but she had "skip" lesions that usually indicates Crohn's... so, it's likely more a Crohn's colitis, overall. But they've written it as indeterminate and Crohn's on different reports.

I hope that treatments con't to improve for IBDers. Smiler

I'm ALSO hoping that maybe the new GI I see might consider Humira for ME, because of my perianal fistula.
Jan DollarJan DollarModerator, RN, retired
Yeah, the skip lesions would point more toward Crohn's colitis, which is still Crohn's.

A number of people here havel gotten good results using Humira or Remicade for perianal and fistulizing disease. I suppose you are wondering if YOU actually have/had Crohn's colitis... Particularly since there is a stronger hereditary association with Crohn's. I suppose it really doesn't matter much, since treatment is nearly the same. But, some docs are more willing to be more aggressive about Crohn's than UC.

Jan Smiler
rachelravenrachelravenMember
I am. I'm hopeful the new GI might consider it, because my surgeon just does NOT want to touch me in any sort of fistulectomy/surgical way... and that's exactly what her GI docs said. They will be more aggressive with Crohn's patients, because they know that UC patients have a surgical option.

I see them in two Mondays, so we'll see! lol Maybe we'll ALL be on a biologic?

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