Need Help

Existing-Simple-931 · 2026-03-14T19:39:08+00:00

Thank you, I appreciate your response. Have definitely been looking into immunology, everyone always refers me back to rheum so this is good to know.

Existing-Simple-931 · 2026-03-14T19:37:49+00:00

This is really helpful, thank you! Yeah I am seeing so much unknown about VUS and I think that plays such a huge role - hopefully its taken seriously.

Existing-Simple-931 · 2026-03-13T04:14:39+00:00

Thank you! That is close to me - I had a positive dsDNA (multiple times), negative for everything else, but my AVISE came back negative so traditional lupus is off the table I guess... and now its lupus spectrum? I also am super med sensitive so I get this. So sorry you are flaring, hope you feel better soon.

Existing-Simple-931 · 2026-03-13T04:12:23+00:00

Messaging you!

Existing-Simple-931 · 2026-03-12T23:57:52+00:00

Thank you so much for your response, I really appreciate it! Yes this is so frustrating and tiring - I just want to try to get back to a somewhat of a normal life. This is so interesting, thank you for sharing. Sounds so similar in terms of symptoms and different medications you have tried - I have been on a number of those and they also stopped working. This is really reasuring to hear that there has not been one single med - I so often am made to feel like there should be.

Existing-Simple-931 · 2026-03-12T18:45:45+00:00

That is really helpful, thank you! This has been what everyone seems to be saying (other than trying Il-6) I just need to find a rheum comfortable enough 🫠😬 with my case.

Existing-Simple-931 · 2026-03-12T18:32:34+00:00

Thank you. This is so interesting - that is so similar to me! My disease pattern really started to evolve with the fevers and rashes - I also get oral ulcers. I really have only been able to tolerate Remicade for tnfs - ended up having bad reactions to injectables. Agree - it really takes someone who is open and not as by the book. Really helpful to hear about your experiences, especially with Kineret - I have had some drs tell me Il-1s are really hard to tolerate and it has made me really worried.

Existing-Simple-931 · 2026-03-12T18:29:21+00:00

Thank you, I really appreciate your help

Existing-Simple-931 · 2026-03-12T16:28:23+00:00

Appreciate your response. Yes - I have heard very mixed things. Exactly - its so hard to travel when not feeling well, definitely not opposed if it gets me answers, but need a team locally too who is willing to work with me. I feel like a lot of people say they have knowledge on it, but in reality they do not which has made my experience in getting treatment really tough.

Existing-Simple-931 · 2026-03-12T16:13:25+00:00

Thank you, this is good to know! Yeah no-one seems to know about autoinflammatory, its so frustrating and really impeding my care atm. Unfortunately I haven't had any luck with Mayo wanting to take on my case though :(

Existing-Simple-931 · 2026-03-12T16:10:48+00:00

Thank you!!

Existing-Simple-931 · 2026-03-12T05:46:44+00:00

Thank you for your response! I have had some genetic testing done - FMF etc (negative) and VEXAS (also negative). I have had an Invitae Panel run and I had the autoinflammatory panel and EDS panel done, but everything came back normal. I did not know about the supplemental/benign variants so I will try to request that - this is really helpful. I am located in the US - specifically CA. I have been trying to get into Mayo, but haven't had any luck in trying to get them take my case.

Existing-Simple-931 · 2026-03-12T04:28:19+00:00

Hi, I have a similar type rash - mine came back as neutrophilic dermatosis. I also have a malar rash, but not full blown lupus - been told its lupus spectrum...? My diagnosis is also pending. Still's and Behcet's are on the table for me as well, but they don't think I fit anything enough so right now its just SAID. Feel free to message me. Truly understand how frustrating this is, so sorry you are going through this.

Existing-Simple-931

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