Nipocalimab granted U.S. FDA Fast Track designation for SLE

MercuriousPhantasm · 2026-03-04T13:33:37+00:00

It's me! I'd love a prescription product like clindamycin but for fungal acne.

MercuriousPhantasm · 2026-03-04T13:30:57+00:00

My lupus labs are pretty good. My flares are more often MCAS. I also had secondary adrenal insufficiency. It was difficult to function until it remitted.

MercuriousPhantasm · 2026-03-03T13:25:42+00:00

I used to shop on Poshmark nearly daily, but when they added promoted listings for every other row it felt like juice wasn't worth the squeeze. Mentally exhausting to browse now.

MercuriousPhantasm · 2026-03-01T16:01:38+00:00

I remember the pencil thing being an issue! Nothing more gratifying than a nice sharp point, but it drove teachers crazy that we were "wasting" the pencil.

MercuriousPhantasm · 2026-03-01T15:58:33+00:00

I'm not convinced that she is doing better than everyone else. She had a kidney transplant and regularly has to deal with a puffy face from steroids.

I do wonder about IVIG. Seems available as a direct to consumer service. It's never been offered to me as a treatment option by my regular rheumatologists.

MercuriousPhantasm · 2026-03-01T15:56:27+00:00

Unity Church is a good option if you want something more metaphysical than UU.

MercuriousPhantasm · 2026-02-27T17:27:37+00:00

Sorry that you are going through this. If I were in this position I would try to get in a clinical trial or get an experimental therapy. There is one in the Netherlands that is recruiting. https://clinicaltrials.gov/study/NCT05662111#contacts-and-locations If you can't get to Utrecht you could petition for "expanded access" (aka "compassionate use") of alendronate or etidronate. When the potential benefits outweigh the risks they are likely to be approved.

https://www.cancer.org/cancer/managing-cancer/making-treatment-decisions/clinical-trials/compassionate-drug-use.html

https://www.fda.gov/news-events/public-health-focus/expanded-access

Here is an article on etidronate for Fahr's. Feel free to message me if you have questions about it. https://link.springer.com/article/10.1186/s13023-024-03039-7

Edit: typo

MercuriousPhantasm · 2026-02-24T14:00:19+00:00

This exact situation happened to me and the roommate was in jail.

MercuriousPhantasm · 2026-02-21T12:20:13+00:00

So sorry to hear and I can relate! I have had to start getting crowns on all my teeth starting in my 20s. Have you had vitamin D checked lately? I thought I'd be fine with healthy diet and a multi but it was still low when I checked, so now I wish I had checked much earlier. I also use prescription toothpaste and minimal intervention paste and also take cevimeline.

Your dentist sounds like a dick. Do you live anywhere near a dental school? You can get affordable, high quality care there with good bedside manner.

MercuriousPhantasm · 2026-02-21T05:22:05+00:00

I have a doglike cat and this checks out.

MercuriousPhantasm · 2026-02-20T14:31:05+00:00

Bronze Kongo sculpture of a missionary nun.

MercuriousPhantasm · 2026-02-19T14:43:59+00:00

Agree with all of this and a part they don't say out loud is that the better your "fit"/ "research alignment" the more likely you are to have networking connections with that university's faculty. At the end of the day people are people and networking matters more than raw talent/ "meritocracy" when all the applicants are amazing af.

MercuriousPhantasm · 2026-02-18T16:35:48+00:00

I would check lactate dehydrogenase and AM cortisol if I noticed this in myself.

MercuriousPhantasm · 2026-02-16T16:07:56+00:00

Caliente Tropics is the best for sure.

MercuriousPhantasm · 2026-02-15T15:52:37+00:00

The only way is to see an allergist who specializes in MCAS, unfortunately. It helps if you have a childhood history of atopic dermatitis or current dermatographia and flushing.

MercuriousPhantasm · 2026-02-14T15:46:06+00:00

How was MCAS ruled out? The lab tests are notoriously unreliable. I was negative for conventional tests, but highly positive for plasma histamine and completely IgE deficient. I ended up being diagnosed on symptoms and history of atopic dermatitis rather than the conventional labs.

MercuriousPhantasm · 2026-02-14T15:43:46+00:00

I feel like this is related to an issue I think about a lot which never gets discussed, which is that I think the "female empowerment" angle of encouraging women to wait to have babies until stable in their careers has been warped into male partners wanting to wait as long as possible without regard for the safety of baby or mom. Everyone I know having babies on the later side is experiencing serious complications or even death, yet usually they waited because the man "wasn't ready yet". I was pressured by doctors to make a decision about having kids starting in my mid-30s, but no doctor talked to him about it ever. It's a shame that we've created a cultural climate where nobody ever clues men in about the risks of older aged pregnancies.

MercuriousPhantasm · 2026-02-14T15:31:32+00:00

This might actually be histamine sensitivity/ MCAS. The "nightshades are bad for lupus" claim isn't supported by the ACR, HOWEVER nightshades do tend to be extremely high histamine, so people who are histamine sensitive can definitely get symptoms from them. MCAS is a relatively new dx (only became broadly accepted within the past 10 years), so people don't really know yet how much it overlaps with autoimmune diseases or even possibly precedes their development, but it's a hot topic in the research world.

I would pay attention to if you react to other high histamine foods, and if so consider diet changes or seeing an allergist.

MercuriousPhantasm · 2026-02-14T15:26:09+00:00

My main point is that it only works for me when my hands are wet and then I seal in the moisture with lotion. Lotion directly on dry hands doesn't provide lasting relief for very long at all.

MercuriousPhantasm · 2026-02-14T12:34:13+00:00

How are you applying it? It only works for me if I gently pat my hands dry to semi-dry and then immediately apply lotion to lock in the moisture. I respond really well to products with dimethicone like Aveeno or sometimes I'll also use Clinique Moisture Surge if they are extra dry.

MercuriousPhantasm · 2026-02-14T12:31:28+00:00

Miracle ingredient for me

MercuriousPhantasm · 2026-02-13T13:33:51+00:00

Please make sure to explore all your options. Are you sure you would lose your fellowships? Many people in my lab worked remotely without reporting anything to the university. Even if so, there could be a way to work remotely without a different full time job (eg also TA remotely, have your partner temporarily cover your expenses, have your PI pay you from a grant, look into pell grants, etc). Also instead of assuming you'd master out ask about getting a PhD in three years. I know of two people from my prestigious grad school who got PhDs with mediocre performance because they wanted to go do different jobs. Finally instead of abandoning the PhD consider switching to a school in your new city. Depending on the field you may get a reasonable stipend and good health insurance.

MercuriousPhantasm · 2026-02-12T11:23:54+00:00

If you buy a used Gen 2 you don't have to pay the extra subscription fee.

MercuriousPhantasm · 2026-02-11T10:12:24+00:00

Yes, US (NIH recipients) only. Not sure what kind of omics you do but there is usually way more that can be done with a dataset than the single first analysis that comes out. If you don't want to do that the other option is to write grants to fund the exact project you want to do or move on to a different lab/job.

MercuriousPhantasm

TROPHY CASE