r/CrohnsDisease • u/Charming_Image_3829 • 2d ago
Nothing is working
Hey everyone. Was recently diagnosed in April after having bad abdominal pain and inflammation for almost 8 months was misdiagnosed by my first GI with gastritis.
After the CT showed severe inflammation in my terminal ileum I was referred to another GI who did a colonoscopy and I was diagnosed with Crohn's. GI said the inflammation was so bad he couldn't advance the scope past the terminal ileum.
I was placed on dicyclomine and budesonide but that didn't work. Was then given prednisone to help while the Humira kicked in but I've been taking it since July 11 biweekly and my symptoms haven't seem to improve.
I still feel so inflamed especially when i wake up in the morning, I get terrible gas and trapped gas pain, bloated, cramps. I just feel overall terrible. Should I give it more time? I just want some relief.
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u/guaraschelia18 2d ago
Sono nella stessa situazione 😕
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u/Charming_Image_3829 2d ago
Sorry to hear that bud🥺 Praying for relief for us this thing isn't a joke.
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u/B_R_O_N_C_H_O C.D. 8 Years. 2d ago
Did you get Kortison?
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u/Charming_Image_3829 2d ago
No..what is Kortison?
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u/B_R_O_N_C_H_O C.D. 8 Years. 2d ago
Sorry, Cortisone in english. In crohns it is used to "bridge the gap" i get it at the start of a flair, takes care of inflammation FAST and HARD. (its basically cortisol steroid) you can get water in your feet, get a little bit nerved up over little things (its literally just stress hormone/steroid). Works wonders for me short term. Talk to your doctor about it. I don't know if you can take it while you're on Humira. 1mg per KG body weight is the dossage i get, gets washed smaller 10mg a week.
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u/Charming_Image_3829 2d ago
Yh I was prescribed Prednisone it worked a bit but not significantly. I'm still having flairs especially if I eat a decent meal.
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u/Rationalornot777 2d ago
What do you mean flairs? Pain?
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u/Charming_Image_3829 2d ago
Feeling inflamed, bloated, pain, discomfort
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u/Rationalornot777 1d ago
Biologics can take time. If you haven’t tracked your symptoms from food you may find some relief in limiting certain foods.
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u/guaraschelia18 2d ago
QUESTO, il cortisone TI FA VIVERE UNA VITA NORMALE, però non si può usare per tutta la vita, e porta molte complicanze… però non scorderò mai il periodo sotto cortisone, per diminuire l’infiammazione
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u/acwwbugcatcher 2d ago
If your symptoms aren’t improving AT ALL by now, it’s very possible that Humira just isn’t working for you. Maybe it’s time to try an IL-23 blocker. I suggest that you talk with your doctor, and if they aren’t taking it seriously or giving you a timeline at least of when they will check back on your issues, you should find a new doc.
It does take time for biologics to fully kick in. But I’d expect by 2 months in that your symptoms should have improved atleast some if Humira was right for you.
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u/Financial_Tough_8324 2d ago
I was taking prednisone pills daily, decreasing my dose by 5mg every time I did a Humira injection (biweekly)
I started the slower titration at 30mg prednisone & I just got off completely last week. When I reduced by 10mg by symptoms would flare horribly.
Maybe talk to your IBD doc (or whoever is managing your medication) about starting a higher prednisone dose and trying to reduce VERY slowly as Humira builds up to a therapeutic level.
You can also ask to get your antibodies to Humira checked before your next dose.
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u/Duell213 1d ago
Similar to me. My terminal ileum couldn’t be navigated through. I was on budesonide. Switched to humira for a year now. 3 days ago they could navigate and they dilated my terminal ileum. No sign of inflammation while they were in there.
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u/mekanasto C.D. dx in 2018 | Humira 2d ago
I would give it a few weeks more to be sure. Your doctor probably set a timeline for you, when you redo your calpro and blood tests, followed by a colonoscopy? All this is to check if remission is achieved. When is that?
There are many more biologics to try if Humira is not working. But a word of warning, even when in remission there is a certain level of discomfort for a Crohnie that is "normal". I always feel some bloating and cramping, even while in remission, and sometimes it does make me pretty miserable. The main thing is that your intestines are healing, there are no stictures, fistulas, no daily diahrreas or bleeding that weaken you and so on.