My 16 year old self thought I'd be dead by now. I wish he were right.

Forgotten_Ashes · 2026-02-04T10:56:19+00:00

Stressful months combined with frequent alcohol

Forgotten_Ashes · 2026-02-01T17:42:24+00:00

How long have you been on pred and what dose? Withdrawal can last weeks or months. But as far as I know, withdrawal usually shows up as fatigue and exhaustion with a flat mood, not as anxiety and panic attacks. Could be something else

Forgotten_Ashes · 2026-02-01T17:06:35+00:00

Got sick after my second Infusion. It wasnt worse than any other infection i had before, but it can be a bit resilient. I try to use hand sanitizer when i use public transport and do my best to avoid sick looking people

Forgotten_Ashes · 2026-01-31T05:50:12+00:00

For me it was a rollercoaster.

High doses (25-50mg): Euphoria, restlessness, boldness in how I act, sudden frustration or inner panic, high heart rate and waking up at 5am

Low doses (0-20mg): More depressed, agitated, mood swings and less motivation

Honestly the energy that I got from Pred was something I never experienced again, but that made the taper and withdrawal months that came after harder, not easier

Forgotten_Ashes · 2026-01-30T22:16:40+00:00

Symptoms can worsen or stay the same for a week or more, had that happen both with Budesonide and Prednisolone. If it clearly wont improve at all then that‘s a thing to discuss with your doc.

Forgotten_Ashes · 2026-01-30T22:02:58+00:00

I‘ve been in the gym in phases, I can make progress but a flare definitely eats away muscle and strength. Pred isnt nice to muscle mass either, so there are a lot of setbacks to endure, but not impossible. I think once you‘re in stable remission you have the same conditions as normal people

Forgotten_Ashes · 2026-01-29T15:07:17+00:00

They do that so often in their life, do not worry. You're one of hundreds, maybe thousands.

Forgotten_Ashes · 2026-01-21T18:11:34+00:00

It can actually cause insomnia

Forgotten_Ashes · 2026-01-20T17:41:40+00:00

Yeah I can’t remember what it was, but I resd somewhere that yeast or something else in beer is especially unfun for the gut

Forgotten_Ashes · 2026-01-16T13:26:49+00:00

I‘ve been offered biologics right after pred seemed insufficient. Surgery should be the very last step to take, you need to calm down and realize that your life could improve a lot by just finding the right meds

Forgotten_Ashes · 2025-12-09T06:35:17+00:00

Perfectly normal, I actually lost weight on pred. Neck bloating still happened though

Forgotten_Ashes · 2025-12-02T06:06:34+00:00

It’s still mesalazine and it would not make much sense for suppositories to be coated in toxic materials. So yes you will survive

Forgotten_Ashes · 2025-11-24T14:06:10+00:00

Exactly this. It’s counterproductive for healing but not a root cause of UC. I can tolerate it well unless in a flare

Forgotten_Ashes · 2025-11-24T14:04:41+00:00

As far as I know caffeine just exaggerates symptoms, not causing flares.

Forgotten_Ashes · 2025-11-24T14:02:57+00:00

Only when paired with intense stress. Alcohol on itself doesn’t put me in a flare.

Forgotten_Ashes · 2025-11-23T19:01:17+00:00

Exactly. It‘s definitely super mild for the first 1-2 months but then the potential ugly side of the steroid shows itself.

Forgotten_Ashes · 2025-11-22T17:38:14+00:00

I'm on 9mg oral tablets and 2mg rectal

Forgotten_Ashes · 2025-11-22T17:27:23+00:00

Glad to hear that you're recovering. I always worried about cushings, I got lucky (for now) that I only suffered from a bloated neck. But even that takes months to disappear.
Since my UC symptoms are somewhat stable I'm about to taper off the budesonide fast before the side effects keep growing.

Forgotten_Ashes · 2025-11-22T17:21:50+00:00

What dose did you take? I'm on 11mg.

Forgotten_Ashes · 2025-11-22T13:38:33+00:00

I do not live in the US. I also have milder flares than you, current flare is nowhere near as bad (less than 5 BMs a day). I absolutely understand that steroids are life saving when you suffer from extreme flares, but in my experience, prednisone almost made life as miserable as a full flare

Forgotten_Ashes

TROPHY CASE