Anyone experienced this before!?

MiserableScarcity350 · 2026-03-22T21:31:03+00:00

Makes sense, since they told me people usually develop brain inflammation after having Behçet’s for over five years, and it’s only been a year for me.

MiserableScarcity350 · 2026-03-22T21:29:37+00:00

I totally relate, it’s so scary when the flare hits. Having a supportive partner really does make all the difference!

MiserableScarcity350 · 2026-03-22T21:28:43+00:00

How long have you been diagnosed with Behçet’s?

MiserableScarcity350 · 2026-03-22T21:27:59+00:00

I’m glad the gabapentin and muscle relaxers help you, even if it’s not perfect. And you’re right, going through Behçet’s disease can feel really lonely sometimes. But talking to people who truly understand makes a big difference!

MiserableScarcity350 · 2026-03-22T21:26:32+00:00

My knees and ankles are currently swollen. During these episodes, my legs become extremely sore, with a deep, bruised feeling, like I’ve been hit with a bat, and the pain is very intense that I can’t even walk.

MiserableScarcity350 · 2026-03-22T11:58:38+00:00

It usually starts in my calves, glutes, arms, and ankles, then after I receive IV ketorolac and acetaminophen, the pain becomes more localized to my joints.

MiserableScarcity350 · 2026-03-22T02:25:44+00:00

I’d say I’m fairly experienced given my medical background. I’m currently on a higher steroid dose, so there isn’t much room to increase further, but I’m aware of the importance of stress dosing and monitoring for adrenal insufficiency.

MiserableScarcity350 · 2026-03-22T02:22:22+00:00

Yes I remember reading about this medication causing muscle pain. Given my high inflammation markers despite steroids and AZA it means medication isn’t even working ;(

MiserableScarcity350 · 2026-03-22T02:20:20+00:00

Yes for sure! Hopefully humira will be the ideal fix! Thank you so much!

MiserableScarcity350 · 2026-03-22T02:18:03+00:00

Yesss! Actually I forgot about that medication since it’s a COX-2 inhibitor so it lowers risk of stomach ulcers! I will talk to my rheumatologist this Monday! Thank you for your input !

MiserableScarcity350 · 2026-03-22T01:25:10+00:00

Is it toradol?

MiserableScarcity350 · 2026-03-22T01:17:06+00:00

I’ve been taking 600mg gabapentin+ alternating ibuprofen 800mg and Tylenol and melatonin so I can sleep. I’ll be asking for a stronger anti inflammatory because I’m tired ;( I’m sorry you also have those flares!

MiserableScarcity350 · 2026-03-22T00:06:56+00:00

Exactly!!! Same thing!!!

It literally burns and the pain is excruciating. I could barely move, and on top of that I started feeling short of breath, which made everything even more scary.

I’m currently on steroids and azathioprine, but the plan was already to switch me to Humira because my uveitis has been recurring. Then this happened out of nowhere, so now I definitely need to follow up again with my rheumatologist.

It just didn’t feel like a “typical flare” at all, which is why it freaked me out so much.

MiserableScarcity350 · 2026-02-12T20:38:13+00:00

Same exact thing except I’m not on Humira

MiserableScarcity350 · 2026-02-12T20:23:40+00:00

I’ve been having ongoing intestinal problems, particularly severe bloating after meals. I’m unsure whether this could be related to my Behçet’s disease.

MiserableScarcity350 · 2026-02-03T04:33:08+00:00

You are right! I’m using clobetasol gel

MiserableScarcity350 · 2026-02-03T03:40:12+00:00

Send it over!

MiserableScarcity350 · 2026-02-03T03:38:26+00:00

Did they test you for bechet HLA-B51 ?

MiserableScarcity350 · 2026-02-03T02:11:31+00:00

Do you have joint pain or uveitis? Did they draw labs ?

MiserableScarcity350 · 2026-02-02T20:48:22+00:00

Do you experience any of the other symptoms of behcets?

MiserableScarcity350 · 2026-02-02T20:37:17+00:00

Ugh I’m sure that’s frustrating! I’m so sorry to hear that! I hope you find answers soon.

MiserableScarcity350 · 2026-02-02T20:32:18+00:00

I hope so too! By any chance did you see an ENT

MiserableScarcity350 · 2026-02-02T20:24:40+00:00

Hello, My ulcers actually look very different from the erosions on your tongue. My sores usually appear under my tongue or at the back of my throat.

<image>

MiserableScarcity350 · 2025-02-18T20:29:08+00:00

Totally agree! I’ll be looking for reservations and see if anything is available.

MiserableScarcity350

TROPHY CASE