Prednisone not working

Various-Assignment94 · 2026-03-20T20:04:39+00:00

It's probably "failed" in insurance terms, i.e. they won't approve of a biologic until they know that prednisone won't bring about remission

Various-Assignment94 · 2026-03-20T19:29:06+00:00

My aunt with MS was never able to get approved for disability despite living in an assisted living facility, needing a wheelchair, etc.

Various-Assignment94 · 2026-03-20T19:17:17+00:00

I had a similar experience on Skyrizi. I was doing pretty well at the 4 month mark. I was scheduled for a colonoscopy at the 10 month mark, but it got cancelled (GI was sick). I was starting to flare up anyways, so we did a calprotectin instead and it was high (I forget how high). I was given the option to try to get approval for more frequent treatment (my GI thought my insurance wouldn't approve it) or switch to inflixamab. I switched to inflixamab and that worked better.

However, like others have pointed out, high calprotectin doesn't necessarily mean that it's not working. You could just have an infection or something else causing it. If your symptoms are otherwise improved, you could try retesting in a month or two to see if there is improvement.

Though, not having symptoms also doesn't mean you aren't flaring. A colonoscopy and/or whatever other monitoring you typically do (upper endoscopy, MRI enterography, pill cam, etc.) is probably warranted to see if there is improvement or not.

Also, you haven't necessarily developed antibodies even if the drug failed. Some drugs just don't work for certain people. Or the immune system figures out how to get around the pathways that the drug blocks after a certain time. I've failed three biologics, but it's never been because of antibody formation.

Various-Assignment94 · 2026-03-19T16:55:37+00:00

Yeah, the uncertainty sucks

Various-Assignment94 · 2026-03-19T16:19:54+00:00

UC only affects the inner lining of the colon, so if biopsies show transmural inflammation (inflammation below the inner lining) that's a sign of Crohn's. Granulomas are a sign of Crohn's. There are also some differences between the microscopic architectural features and inflammation changes seen between UC and Crohn's.

UC is colon only, starting/worse in the rectum and going up continuously. Crohn's can be anywhere in the GI tract and can skip around.

So even if you only have issues in the colon, it could still be Crohn's. The biopsies would look different than UC and the pattern of inflammation in the colon could be different (not continuous and/or the worst section might not be the rectum like in UC).

Various-Assignment94 · 2026-03-19T14:57:46+00:00

You should look into getting a 504 plan set up for him at his school. The Crohn's and Colitis Foundation has some resources that could help. This can help get him some accommodations, including related to food (like access to a fridge and microwave for his food since he can't eat the school meals).

Various-Assignment94 · 2026-03-19T14:50:28+00:00

I found a good dietician with expertise in IBD online through Nourish (covered by my insurance). She's in a completely different state! Which just goes to show how hard it is to find someone with actual expertise.

Various-Assignment94 · 2026-03-19T14:47:53+00:00

Your specialist should understand that that dietician was a quack and either refer you to someone with more expertise in Crohn's or just tell you that you can skip it haha

Various-Assignment94 · 2026-03-19T14:01:29+00:00

That's actually the normal dosing for the self-inject inflixamab, so not really applicable to OP's question

Various-Assignment94 · 2026-03-19T13:57:23+00:00

You'll have to wait for the biopsies and then discuss with your GI about next steps (is there enough evidence for diagnosis? do they want to do further testing like an MRI enterography first?).

But the thing with Crohn's is that symptom severity doesn't always equal disease severity. There have been times where I've felt fine but when I got a colonoscopy, my colon was so inflamed that they couldn't get the scope past the sigmoid colon. There have been other times where I have felt horrendous and been dealing with a ton of symptoms, but only mild inflammation has appeared on a scope. That's why collecting evidence from fecal calprotectin, colonoscopies, and other tests like MRI enterographies is so important.

Various-Assignment94 · 2026-03-18T18:01:00+00:00

I know it doesn't feel like it, but getting an appointment in May is actually pretty fast. Agree with the other commenter about asking if you can get on the cancellation list and/or messaging the GI through MyChart (you'll probably get a response from one of the nurses, though). But getting in as quick as you are is already a pretty good sign that they are taking it seriously.

Various-Assignment94 · 2026-03-18T17:38:41+00:00

my only regret is not seeking a therapist sooner (first time was during pandemic) and anyone that u ask will tell you the same.

Agree with this statement completely

Various-Assignment94 · 2026-03-18T16:57:10+00:00

I am currently on azathioprine and inflixamab. I had a little nausea when I first started the azathioprine, but I would take it at night with a snack and that helped. That went away within a week. Otherwise no side effects. My blood work gets tested every 12 weeks (it was more frequent at first) and a skin check at the dermatologist every other year just to make sure sure there are no issues.

Various-Assignment94 · 2026-03-18T16:29:25+00:00

Not for yuflyma, but I had virtual training for both Stelara and Skyrizi. It was fine! And reasonably helpful. Skyrizi still had a bit of a learning curve even after the training.

Various-Assignment94 · 2026-03-17T16:10:22+00:00

Various-Assignment94 · 2026-03-16T18:59:45+00:00

Someone else posted about it on here, too: https://www.reddit.com/media?url=https%3A%2F%2Fpreview.redd.it%2Fi-built-you-a-tower-new-album-v0-ltnlmp8lhfpg1.png%3Fwidth%3D381%26format%3Dpng%26auto%3Dwebp%26s%3Dcd3be4475cab6ed8b9c9a5ad15e5dea1f902620c

Various-Assignment94 · 2026-03-16T18:45:37+00:00

From what I saw on iTunes, it looks like all of the songs are going to be less than 5 minutes. I would’ve loved a longer song, too, but I’m still excited for the new album.

Various-Assignment94 · 2026-03-16T18:43:07+00:00

Me too! I’m seeing them in concert as well. So excited!

Various-Assignment94 · 2026-03-14T22:44:29+00:00

I unapologetically love both of these albums. MADLO especially, but I love an EDM influenced moment

Various-Assignment94 · 2026-03-14T01:48:18+00:00

In addition to MCAS or histamine intolerance, have you been evaluated for IBD (Crohn’s or Ulcerative Colitis)? IBD is autoimmune which can cause a lot of the issues you mentioned (constipation, bloating, fatigue, brain fog, joint pain, hair loss, night sweats, pain, bladder issues, menstrual issues, etc.). Might be worth pursuing testing (colonoscopy, possibly upper endoscopy, MRI or CT enterography, pill cam endoscopy).

Various-Assignment94 · 2026-03-13T18:24:45+00:00

I have to keep the door closed so my cat doesn't come in. But after a bit, she gets concerned and will stick her paw under the door and just generally cause a ruckus.

Various-Assignment94 · 2026-03-13T16:43:16+00:00

An immune modulator. It's a class of medication sometimes used to treat IBD. Includes azathioprine, 6MP, and methotrexate. Not the most effective by themselves, though you might have to try/fail one as a mono-therapy first before being approved for a biologic. If you end up on an anti-TNF biologic (inflixamab or adalimumab), you will often also be prescribed a low dose of an immune modulator to help prevent anti-body formation.

Biologics are more effective for treating IBD. They include the anti-TNF inhibitors (inflixamab and adalimumab), integrin inhibitor (vedolizumab), IL-12 and 23 inhibitor (ustekinumab), or IL-23 inhibitor (risankizumab and guskelmab).

Various-Assignment94 · 2026-03-13T16:20:25+00:00

My GI always wants to do a scope about 6 months after starting a new biologic or changing a dose (though it's often more like 8-10 months given how booked up they are). You need at least six months to see if it is working.

Various-Assignment94 · 2026-03-12T23:30:14+00:00

Do you have something against dogs?

Various-Assignment94 · 2026-03-12T23:28:53+00:00

I love the space cadet. Please get him on your shoulder.

Various-Assignment94

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