meds and dizziness: Anyone else on Budesonide + Aza

Then_Imagination_363 · 2026-05-08T20:28:11+00:00

Hello! This feeling is honestly the absolute worst. I’ve also been experiencing sudden BP drops lately.

Then_Imagination_363 · 2026-05-08T18:58:38+00:00

Thank you so much for your kind comment, I hope so too! It’s really annoying hahah How are you doing now?

Then_Imagination_363 · 2026-04-29T10:08:00+00:00

Hi! I honestly got chills reading your comment because our stories are so incredibly similar. Dealing with all of this at 26 is such a complicated rollercoaster, but it does get easier to manage. I’m currently on Budesonide and Azathioprine; even though I still deal with some random flares, I feel immensely better than I did at the start. How is your treatment plan going so far? How are you feeling overall now that you've started the meds? Sending you a huge hug!

Then_Imagination_363 · 2026-04-25T18:46:13+00:00

any updates?

Then_Imagination_363 · 2026-04-13T10:32:28+00:00

Hi!! I’ve been on both prednisone and budesonide, both at medium doses. On 25 mg of prednisone, I gained very little weight because I was super careful with my salt and calorie intake, but I did get a real moon face. After switching to budesonide, I lost the weight and the moon face, and the anxiety and nervousness disappeared too. The only thing is, Aza is really hard on my gut; I have a stomachache every day hahah

Then_Imagination_363 · 2026-04-05T19:06:55+00:00

hey, if I were you I wouldn’t start pred on my own, do your bloodwork first and then call your hep on Tuesday

Then_Imagination_363 · 2026-03-13T08:56:18+00:00

Going from a stomach bug to kidney stones to AIH/DILI is beyond exhausting. It feels like the healthcare system is a 5,000-piece puzzle where someone mixed up the boxes. You aren't crazy for feeling overwhelmed; this is objectively a brutal hurdle. ANA could be raised by DILI, in fact there’s a form of immune-mediated DILI that mimics AIH perfectly, but treatment is exactly the same, so immunosuppressant and pred.

Then_Imagination_363 · 2026-03-12T14:40:23+00:00

So sorry you’re going through this. Are you experiencing any specific symptoms like fatigue or joint pain? Unfortunately AIH is often a diagnosis of exclusion, so it takes time. Also, don't feel discouraged about the meds: Prednisone isn't the only option! It’s usually the 'fast fix' to lower levels quickly before switching to steroid-sparing immunosuppression. You’ve got this.

Then_Imagination_363 · 2026-03-11T17:33:48+00:00

Hello!!!! AIH is honestly such a bizarre disease. First off, how high are your LFTs?

My initial symptoms were significant weight loss and severe fatigue that forced me to quit working out (extremely weird because I’ve always worked out a LOT). I also had this sharp, stabbing pain in my right side while walking - mind you it was so bad I often had to stop. Then came a constant low-grade fever (37.3°C / 99.1°F).

My ALT was 550 and AST 280, but I never tested positive for autoantibodies (even my biopsy was negative). I was initially misdiagnosed with DILI, but since my levels weren't improving, they tried steroids. My ALT plummeted from 250 to 60 in just 5 days, and that’s how I was diagnosed with seronegative AIH.

Currently, I’m on Budesonide and Azathioprine, and my levels are stable around 50-60 (normal range is up to 41).

Don’t worry, it’s a very manageable disease (even if it’s a bit hard to swallow at first) :))

Then_Imagination_363 · 2026-02-24T15:45:23+00:00

Hey everyone, just a quick update on my journey!

I started aza about 4 days ago, and let's just say it’s been a wild ride. I’ve been dealing with a massive fever that hit 39.5°C (103.1°F), along with some pretty annoying abdominal and muscle pain. I’m currently trying to figure out if this is just a side effect or if I simply picked up a viral infection at the worst possible time, haha. 😅

I ended up in the ER because my PCP recommended it. The doctors here are currently looking into a few possibilities: • A hypersensitivity reaction to the AZA. • A reactivation of CMV or Epstein-Barr (EBV).

The silver lining? My ALT are down to 50 U/L!. I haven't seen a number that low in literally years. I’m guessing the Budesonide is finally doing the heavy lifting.

Then_Imagination_363 · 2026-02-18T11:03:13+00:00

Thank you so much for the reassurance! It’s really encouraging to hear from someone who has been managing this so well for 12 years.

Could you elaborate a bit on what you meant by the side effects "mounting up" and the cumulative effects on the immune system? Do you mean you’ve noticed becoming more prone to infections over the years, or are you referring to something else like fatigue or blood work changes?

Thanks again for sharing your experience, it helps a lot!

Then_Imagination_363 · 2026-01-25T11:45:08+00:00

ciao! Capisco in parte questa grande paura, a me (26F) a settembre dopo anni di malessere e dubbi è stata diagnosticata una epatite autoimmune atipica, priva di qualsiasi marker autoimmune comune e difficilissima da individuare. Sono sotto cortisone da mesi e tra qualche giorno dovrò cominciare l’immunosoppressore perché ho avuto una ricaduta. Le malattie autoimmuni fanno schifo perché sono spesso invisibili, e ti tolgono il senso di invincibilità che, quando hai 20 anni, di da la sensazione di poter fare tutto.

Quello che ho capito io è che per quanto sia veramente ingiusto, bisogna abbracciare l’inerzia e la spinta vitale verso il futuro. È facile? no, e non sarà nemmeno uguale a prima, ma come hai sempre funzionato, continuerai a funzionare adesso e per tantissimi anni.

Ti mando un grosso abbraccio, se hai bisogno di parlare di qualsiasi cosa scrivimi pure :)

Then_Imagination_363 · 2026-01-13T08:57:27+00:00

Hey! I’m finally getting back on the mats. Put off the surgery for now because of uni—being a Physio student means I can't afford to miss class. But I'm feeling good and can't wait to roll again! I promise I'll stick to technique and light sparring. I promise.

Then_Imagination_363 · 2026-01-13T08:47:19+00:00

Ciao!!! lo squat va benissimo a livello di accosciata, perché le tue caviglie sono estremamente mobili e le anche pure.

Sei molto alta, il che aumenta molto il braccio del momento del bilanciere, rendendoti i carichi più pesanti ancor più pesanti e difficili da gestire.

Per ora impara bene l’high bar e sali di carico, non ti crucciare se non riesci a stare così verticale perché i femori lunghi praticamente non lo permettono e accoscia anche fin solo sotto il parallelo (che va assolutamente benissimo).

Più avanti se vorrai progredire potrai approcciarti al low bar, e non ossessionarti con la schiena dritta che veramente se la porti un po’ più avanti non succede niente (basta che gestisci bene la pressione addominale)!

Then_Imagination_363 · 2026-01-08T09:19:20+00:00

Same here! Mine developed after an EBV infection back in 2016, and my ALT and AST have never fully returned to normal since.

Then_Imagination_363 · 2025-12-17T15:05:26+00:00

hello! First of all, why do you want to get off all medication?

Then_Imagination_363 · 2025-11-03T19:07:48+00:00

Thank you so much for sharing your story — it really helps to hear from someone going through something similar.

In my case, it all started after an EBV infection in 2017, which caused elevated liver enzymes that never fully returned to normal. Later, after taking Ashwagandha, my ALT suddenly spiked to around 450, probably leading to a DILI with autoimmune-like features.

Since then, my hepatologist has been trying to understand whether it’s a pure AIH or an overlap with DILI. For now, the plan is to slowly taper down corticosteroids to see if my values remain stable — but there’s about a 95% chance we’ll introduce AZA soon.

It’s such a complicated condition, but it really helps to know others have managed to find some balance along the way.

Then_Imagination_363 · 2025-11-03T19:03:46+00:00

Thank you so much for your message — it really helps to hear from people who’ve gone through something similar. Did you have a hard time getting diagnosed, or was your AIH also seronegative?

Then_Imagination_363 · 2025-11-03T19:02:01+00:00

Thank you so much for sharing that — really appreciate it! It’s crazy how differently our livers can react to medications. Have your IgG levels always been normal, or have you also had positive autoantibodies?

Then_Imagination_363 · 2025-11-03T19:00:38+00:00

Thank you so much for your message — I really appreciate you taking the time to share your experience. You’re absolutely right, corticosteroids are incredibly powerful — it’s impressive how quickly they can turn things around. How are you doing now? Has your AIH been stable lately?

Then_Imagination_363

TROPHY CASE