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Should I hold on a bit longer?

LuckyD

LuckyD

So I have been on humira for 14.5 weeks now and I feel awful at the moment. The best I felt was shortly after the loading doses and then slowly got worse. I was given a prednisone taper last month (20mg to 2.5mg), tapering every 10 days 5mg. I had some relief, not perfect, but once I got down to 5mg my symptoms came back with a vengeance.

I was switched to weekly injections 3 weeks ago, this Friday is my 4th consecutive week. At what point should I move on? I feel so tired of waiting and I'm just so exhausted all the time now. I also lost the few pounds I managed to gain in the past few months.

I have no antibodies to humira so far. Should I hold on a bit longer? My GI refuses to give me more prednisone, instead he has me on Apriso and mesalamine suppositories. He wants to give it another month. I have UC.
 
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BilboTheApe

I was on humira for about 3 months without it seeming to do very much, so a roughly similar time frame to you. My humira levels in my blood were also quite high without antibodies as well.

It was only after I did a round of EEN that it started to work. Have you thought about doing EEN or have you already tried it in the past? It isn't easy but it got me into remission and potentially saved me from getting surgery. Bowel rest seems to really work sometimes.

I have also heard it can take 6 months for anti-tnf drugs like Humira to start working? So maybe you just need more time?

Nevertheless, sorry you are feeling so lousy LuckyD, I've had a few difficult days recently myself so I can empathise.
 
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crohnsinct

Well-known member
My daughter was in the same predicament at diagnosis. She was on Remicade and every time we tried to taper the steroids she would flare back up again. I think bilbotheape has a great suggestion. My daughter did that and it worked. Our theory (us and the GI at the time) was that the bowel was too diseased for Remicade to be able to heal it and maintain it. So she did 8 weeks of EEN which heals the mucosa (steroids don't). Then we handed Remicade a healed bowel and took it over from there. She was in remission for 3 years on Remicade after that. She is actually about to start EEN again as her current therapy is only sort of working so we are going to try to heal her up with EEN and see if maybe Entyvio and Humor will be able to maintain things for awhile.
 
LuckyD

LuckyD

Thank you both for your suggestion. I will bring this up to my GI. He definitely wants to give the weekly humira another month before we try other options.

Crohnsinct best wishes to your daughter.
 
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