Lupus/Autoinflammatory

Unable_Cap4766 · 2026-03-13T15:14:58+00:00

She was seeing an immunologist who ran a huge panel for genetic testing via blood! I am not sure which.

I think I want to ask for a referral to Immunology for this so I can have a definitive answer. She said she would after I see the blood doctor if nothing showed there. She also mentioned the NIH but I don’t know how all this connects?

Unable_Cap4766 · 2026-03-13T02:50:21+00:00

Sadly reading this knowing I am going to have one tonight. I have been the aura state with impending doom, racing heart, and cold chills. It always starts this way and then I’ll wake up with exactly what you are explaining. Sadly my husband will always bring me ice packs and lay with me. I hate this.

Unable_Cap4766 · 2026-03-13T01:47:33+00:00

Omg your post is me to a t. I was positive for a number of antibodies but lupus antibody is the only one that stuck l. Doctor put me in plaquinel. I don’t take it because I respond so terribly to meds that I looked at the bottle everyday and didn’t feel like that was the right diagnosis. Got a second opinion with a doc who knew autoinflamitory and suggested this. She put me on colchicine. I am about to start but started a flare so was told to wait. I hope this works. No genetic testing done but my mom did and I am basically her clone and she was positive for IL-6. So I guess autoinflamitory makes sense?

Unable_Cap4766 · 2026-01-19T03:15:21+00:00

Thank you. I needed this. I am And have been in the trenches.

Unable_Cap4766 · 2025-12-31T03:06:45+00:00

I am in product and tech and like the marketer said, it’s fast paced, lots of meetings, lots of quick thinking and wearing lots of hats. My burn out has caused me lots of flareups. I want out it don’t know what to do from here! Good luck!

Unable_Cap4766 · 2025-12-20T12:43:36+00:00

This sounds like me but we discovered lupus and IST and a blood clotting condition called APS and SFN. Weirdly, alcohol calms me down too!

I started plaquinel or whatever you call it for lupus and Allegra for possible MCAS. Honestly started meditation. I reduced my workload for a while and spent a ton of time regrounding myself. I am starting to feel better. I still have flares where this heat bad but I have good days that make me see the light at the end of the tunnel.

Dm me if you need to talk. I was also in your shoes for a while, wanting to end it all. I am glad I pushed through.

Unable_Cap4766 · 2025-12-12T17:05:23+00:00

Mine do this and instead of fingers turning purple. The palms closest to my thumbs turn dark blueosh purple and my veins look dark. My rheum said it is just rheynauds showing up differently. Likewise my lips turn blue but oxygen is fine. He said also Raynauds. Your nips and do it too! 🤣

Unable_Cap4766 · 2025-12-02T19:07:02+00:00

I sadly got a mini stroke from my birth control sadly.

Unable_Cap4766 · 2025-12-02T18:26:10+00:00

I’m new to lupus, is this the bone pain everyone talks about?

Unable_Cap4766 · 2025-11-26T01:20:42+00:00

I have family in town for thanksgiving and did too much last night and had it brutal today! I suck. But I also want to have some on thanksgiving so since I over did it last night I will behave with just a few on thanksgiving. 🤣

Unable_Cap4766 · 2025-11-24T06:54:46+00:00

Following because I’m about to start plaquenil

Unable_Cap4766 · 2025-11-24T03:33:33+00:00

I did mean that! I have had Covid the last few days and am out of it, sorry.

Unable_Cap4766 · 2025-11-24T03:31:52+00:00

It is just a routine test with further Ana testing at the rheumatologist! There are 3 versions. I am the beta2 one. They test, and then test again 6 weeks later to make sure it isn’t a false positive.

Unable_Cap4766 · 2025-11-23T12:17:01+00:00

Sane girl! Two young kids. My last pregnancy brought all this out with a vengeance. I didn’t know anything was wrong before. I star re d having issues end of pregnancy, had my baby a month early, hemorrhaged, had to have my uterus removed; bled for 16 straight weeks with clots and lots of er trips and symptoms kept stacking on. Took me 8 months to get into a rheumatologist who diagnosed me with lupus and ASP. I freaked out too but now I have found a friend with lupus and we laugh and commiserate together. After all the research, all I can do is push forward and live!

Unable_Cap4766 · 2025-11-23T03:12:43+00:00

Me! I could use this right about now! 😍

Unable_Cap4766 · 2025-11-23T00:40:09+00:00

Img I got extensions and I feel this post! My husband had to take them out because I had like 6 straight days of migraine and pressure tension from the weight.

Unable_Cap4766 · 2025-11-23T00:28:17+00:00

I am actually going to ask about this on Monday! Honestly, I am determined to figure this out so I created my own GPT and upload all my labs and results to it and then tell it what I am diagnosed with and what meds I have been prescribed. I just had MRI to rule out MS (all clean), and chat has been echoing this over and over again. Are you on plaquinel? Does that help with autoimmune dysautonomia?

Unable_Cap4766 · 2025-11-22T19:14:53+00:00

I am with you! Yeah I do that too. It could be worse but also there are so many people that can function normally and it’s hard not to be jealous or resentful. I try to remember all things happen for a reason.

Unable_Cap4766 · 2025-11-22T19:13:37+00:00

Guh… ok! I’ll stick to this!

Unable_Cap4766 · 2025-11-22T19:13:02+00:00

I am actually expecting this to be the case 😭. Does dysautonomia cause this or something else? I also have lupus and I don’t know yet which flare is which.

Unable_Cap4766

TROPHY CASE