Trippling up Humira but I'm under 18 :(

[Keepingfaith]

I went to my GI appointment friday & he said that since starting the Sulfasalazine instead of the Apriso, my gut has gotten out of hand...again.
The last appointment we talked about bumping my Humira up to once a week so I can get more relief from it & after some arguing with the insurance, they allowed the dose to be bumped up. The only issue now? I only get 3-4 days of relief & then I'm in the bed, balled up in pain again :thumbdown:

My GI said that he wants me to talk with my Rhuematologist about upping my dose to two Humira injections a week. He said Rhuematologists have more experiance with upping the dose that high. The Humira company says they've never heard of someone as young as me being on a dose that high. They offered me some advice about getting in a clinical trial if my insurance & Rhuemie doesn't approve. The only issue? I AM 15! I'll be 16 next month but geez! I can't wait that long! My GI & I agreed that Humira is the only drug so far, that has given me symptom relief & improved my flare. :sign0085:

My GI also wants me to maybe add Apriso with the Sulfasalzine but he's never had a patient do that either....Our plan is, if this gets approved, to use that dose to achieve remission then ween off back to once a week. Anyone have experiance with bumping up the dose to biweekly Humira/2 injections a week?

 

[handle]

Hi Kf,
Gosh the illness can be aggressive in young people. I suspect it's part of having an active youthful immune system. I've not heard of tripling the humira dose but it doesn't sound unreasonable the way your doc is planning to use it.
One thing I noticed is that you aren't on 6-mp or Aza. They are commonly used to assist the humira, and have been shown to be very useful.
They also usually like to try a few weeks of liquid nutrition in young people.
You age is a concern, but a short run with the extra dose might do the trick - here's hoping!
all the best.

 

[rygon]

Well thats quite a few meds you are on Well if hes happy then i'd go for it, best to feel better now. Have you talked about plans if humira doesnt work?

As handle said it may be worth looking at the diet side and seeing if that helps you at all

 

[Keepingfaith]

I'm looking into diet also if the upped dose doesn't get approved by my Rhuematologist! My GI & Rhuematologist agreed they NEVER want me to get on Imuran/methotrexate. I have a history of gallstones(I got my GB removed in 8th grade) & they said Imuran, 6MP, & methotrexate have been proven to cause stones to form in different organs. Although the risk is small, with me having a history of gallstones, DIL from Remicade, & vision loss from Prednisone, they don't want to take the risk. I guess because I always seem to get the "rare" side effects .

My GI hasn't really talked to me about what to do if Humira doesn't work. He & I don't want to go there. It's the ony drug that's given me relief of symptoms. My Rhuematologist did mention Cimizia as the last step. I don't really qualify for surgery because my disease is active in my mouth, stomach, TI, Colon & rectum.