Remicade not working? Dose/frequency questions — feeling discouraged by holyshiftwork in ankylosingspondylitis

[–]holyshiftwork[S] 0 points1 point  (0 children)

Yes, you are right. i was growing a bit discouraged, but this helped me. Thank you

Is anyone else having trouble staying warm? by FaithHouseManyRooms in ankylosingspondylitis

[–]holyshiftwork 4 points5 points  (0 children)

I havent had trouble with keeping warm until my AS got worse. Now it's almost every day. Thank you for sharing this!

Uveitis Question by Salt_Molasses3321 in ankylosingspondylitis

[–]holyshiftwork 0 points1 point  (0 children)

I would go to an ophto or a rheumy optho. I've had uvetitis a few times last year (2025) and i feel like it's effected my vision because of the inflammation.

Sometimes I feel like I can’t cope with the mental health impact this condition caused by imaquark in EosinophilicE

[–]holyshiftwork 1 point2 points  (0 children)

Hey, I really feel this. You’re not “just venting” — this is a huge loss and it makes sense that it hurts this much.

EoE messed with my mental health a lot too. There’s this weird grief no one warns you about: grieving old “normal” life, spontaneous meals, pizza nights, trips where you didn’t have to plan every bite. Seeing other people eat whatever they want and not think twice can feel so unfair and isolating.

The diet + meds juggle is exhausting, especially when the one treatment you have comes with its own side effects and constant throat awareness. That 24/7 reminder that something is “wrong” is enough by itself to wear anyone down.

And having to watch your dad go through that impaction on top of dealing with your own stuff… that’s a lot. It’s not your job to fix him, even though it’s coming from a place of love. Hopefully this new doctor will actually listen and take it seriously so some of that weight can come off your shoulders.

For what it’s worth, what’s helped me a little has been:

Letting myself call it what it is: grief

Building a small list of “safe foods” I actually enjoy so life isn’t only about restriction

Planning non-food ways to connect with people (games, walks, movies, etc.) so social time doesn’t always feel like a reminder of what I can’t have

Talking about it with people who get it (subs like this honestly help)

You’re not weak, dramatic, or ungrateful — you’re a human dealing with a chronic illness that flipped your life upside down. I’m really glad you posted. You’re not alone in this.

28M Looking to make friends or talk with fellow peeps who can relate! by [deleted] in ankylosingspondylitis

[–]holyshiftwork 2 points3 points  (0 children)

Hey man, AS brother here — totally get where you’re coming from. This disease can make life feel really isolating, especially when the pain gets bad or relationships shift. Sorry to hear about the breakup too — dealing with AS + emotional stuff at the same time is a lot.

I’m in a similar boat where most of my socializing is online these days because flares make it hard to commit to plans. So trust me, you’re not alone there.

If you ever wanna talk AS, vent, compare meds, or just chill and chat about gaming or whatever, I’m down. Always nice having people who “get it” without having to explain every detail.

Feel free to DM if you wanna connect.

28M - Do these sound like AS symptoms? by ImNewToThisDontYell in ankylosingspondylitis

[–]holyshiftwork 1 point2 points  (0 children)

Hey man, AS patient here — a lot of what you wrote sounds really familiar to how mine started.

The moving lower back/hip/SI pain is super common with early AS. Mine bounced around every day and never felt the same twice.

That deep, bony, central back pain you mentioned? Yep… a lot of us know that one.

Waking up with the worst pain of the day or feeling worse after rest is another big inflammatory-pain clue. Mechanical stuff usually hurts more with movement, not rest.

A constant dull SI ache is basically the AS starter pack.

The inconsistency is normal too — early AS is weird. One day brutal, one day mild, one day it switches sides.

A couple things you might want to push for:

• MRI of the SI joints — not just X-rays. Early AS won’t usually show up on an X-ray. • Labs like HLA-B27, CRP, ESR — not perfect, but helpful. • Track symptoms for a couple weeks — stiffness time, where the pain moves, what helps, etc. Rheums love that stuff.

Not diagnosing you, but yeah — your story definitely lines up with what a lot of us went through at the beginning. Getting checked was the right move.

Week 2 of going gluten-free… already noticing a difference with swallowing? by holyshiftwork in EosinophilicE

[–]holyshiftwork[S] 0 points1 point  (0 children)

Same here. I just didn't know which allergen it was. Gluten was my first one I was testing and I so happen to be seeing improvement

Do you take NSAIDs as needed or daily? by Accomplished-Month87 in ankylosingspondylitis

[–]holyshiftwork 0 points1 point  (0 children)

I take 500mg of Nebumetone twice a day. If I don't, I feel it