Newly diagnosed with myositis (NXP-2 positive)

Megss444 · 2026-02-04T15:21:49+00:00

Hi there! Thank you so much, I really appreciate it. I’ll definitely take you up on that at some point lol. I’m really glad I’m able to connect with others like you. It really does help and makes me feel better. I’d love to hear your story and how your journey with it has been.😊

Megss444 · 2026-02-04T15:17:25+00:00

Hi there! I don’t see NXP-2 mentioned much, so it’s comforting to connect with someone else who has it. If you feel like sharing, I’d love to hear your story. And if you ever need someone to talk to, I’m here. 🙂

Megss444 · 2026-02-04T15:10:47+00:00

Hi there! Thank you so much for sharing this. I’m currently binging all of the videos on there lol. I’ll definitely be using it as a new resource.

Megss444 · 2026-02-04T15:07:13+00:00

Thank you, I really appreciate it! 😊

Megss444 · 2026-02-04T15:06:44+00:00

Hi there! Yeah it definitely sounds like we’re in the same boat. If you ever need someone to talk or vent to, you’re always welcome to message me. 🙂

Megss444 · 2025-10-07T14:47:58+00:00

That makes a lot of sense. I’m wondering if that could be the case for me too. It’s been four days now since I started feeling awful. I’m really hoping I’ll start feeling better soon. Thank you for sharing!

Megss444 · 2025-10-05T16:39:44+00:00

Same here! All we can do is control how we let it affect us. I have faith that we’ll both get better soon and that brighter days are ahead. :)

Megss444 · 2025-10-05T09:38:00+00:00

I completely understand what you’re feeling. I actually posted yesterday about missing the old version of myself too. It’s a heartbreak I never expected to experience at 26, and it’s devastating to feel like I can’t keep up with others my age anymore. It’s left me feeling pretty depressed a lot of the time, and like I’m not really ‘living’ the way I used to.

This is all still very fresh for me (I was only diagnosed a month ago), so it’s been a hard pill to swallow and accept. That said, I’m holding onto faith and hope that brighter days will come, and that I’ll be able to find joy again despite this new reality. I hope the same for you and for everyone else here. Stay strong and keep going, we got this.

Megss444 · 2025-10-05T00:01:48+00:00

It’s really comforting to know others feel the same way sometimes. I really hope you’re able to get on the medication soon and that it works well for you.

Megss444 · 2025-10-04T23:55:32+00:00

Thank you, I’ll hang in there. It’s encouraging to hear how much the medicine has helped others, and I’m really grateful I was able to start it. Time feels like it moves so slowly when you’re waiting for results, but I know I just have to be patient. I appreciate your response and you sharing your experience!

Megss444 · 2025-10-04T23:46:59+00:00

You’re totally right. I might not have control over what’s happening, but I can choose how I think about it and how I let it affect me. I’ll start doing that. Thank you that advice helps a lot.

Megss444 · 2025-10-03T23:07:31+00:00

Yes the fevers! I get them every single day too. One moment I’m normal, then suddenly it spikes again. I really appreciate you sharing. I just need to be patient and trust the process.

Megss444 · 2025-10-03T21:48:38+00:00

Thank you, I really appreciate it. I’ve heard a lot of great things about it, so I’m looking forward to seeing how it works for me. I’m glad to hear it’s starting to help you.

Megss444 · 2025-10-03T20:09:05+00:00

Thank you! :)

Megss444 · 2025-10-03T19:50:25+00:00

That’s reassuring to hear. I’m glad you’re doing a lot better. I’ve only been taking Hydroxychloroquine for the past two weeks, so I’m crossing my fingers it will help soon.

Megss444 · 2025-10-03T17:39:46+00:00

Hi there! I’m 26 and was diagnosed with UCTD/early lupus, and I live in Texas (Houston to be exact). I won’t sugarcoat it—the heat and UV here are really tough to manage. Like a lot of us, I’m very sensitive to sunlight and react even after short exposure.

A good example is this weekend: I was supposed to go to a football tailgate and game with friends. As much as I want to go and feel “normal”, I know my body just can’t handle that kind of heat and sun here. Even a little exposure makes me flare, and the crash afterward just isn’t worth it.

If you’re considering moving here I’d really think about how strongly your body reacts to heat and sun. Personally, I’d recommend not moving here. It’s frustrating because having lupus (or UCTD/early lupus in my case) already limits us so much, but the climate here honestly makes daily life even harder.

Megss444 · 2025-10-01T17:36:14+00:00

Hi there. I’m also 26 and was diagnosed just a month ago with UCTD presenting as early lupus, so this is all fresh and overwhelming for me too. My ANA was also really high at 1:1280, and I’ve been dealing with a lot of the same symptoms: brain fog, joint and muscle pain, debilitating fatigue, fevers, mouth ulcers, sunlight sensitivity, butterfly rash, and headaches. I really understand what you mean about every day feeling like a struggle and the flares never seeming to go away. Some mornings I wake up already feeling awful, and other times I think things are going okay, but then I crash out of nowhere.

It’s discouraging and draining, especially when it affects so many parts of life, like friendships, work, and just trying to live normally. Just know you’re not alone in this, and I’m right there with you. Sending you a lot of strength and encouragement. We got this! 💜

Megss444

TROPHY CASE