#autoimmune disease medications

[healzen]

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[reasonsforhope]

Story from the Washington Post here, non-paywall version here.

Washington Post stop blocking linksharing and shit challenge.

"The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.

Her name was April Burrell.

Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.

April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality.

“She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” ...

It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries...

Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.

After months of targeted treatments [for lupus] — and more than two decades trapped in her mind — April woke up.

The awakening of April — and the successful treatment of other people with similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions.

Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery.

And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.

Although the current research probably will help only a small subset of patients, the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated.

“These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.” ...

Waking up after two decades

The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus...

The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvement almost immediately...

A joyful reunion

“I’ve always wanted my sister to get back to who she was,” Guy Burrell said.

In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center...

Because of visiting restrictions related to covid, the family’s face-to-face reunion with April was delayed until last year. April’s brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous.

“When she came in there, you would’ve thought she was a brand-new person,” Guy Burrell said. “She knew all of us, remembered different stuff from back when she was a child.” ...

The family felt as if they’d witnessed a miracle.

“She was hugging me, she was holding my hand,” Guy Burrell said. “You might as well have thrown a parade because we were so happy, because we hadn’t seen her like that in, like, forever.”

“It was like she came home,” Markx said. “We never thought that was possible.”

...After April’s unexpected recovery, the medical team put out an alert to the hospital system to identify any patients with antibody markers for autoimmune disease. A few months later, Anca Askanase, a rheumatologist and director of the Columbia Lupus Center,who had been on April’s treatment team, approached Markx. “I think we found our girl,” she said.

Bringing back Devine

When Devine Cruz was 9, she began to hear voices. At first, the voices fought with one another. But as she grew older, the voices would talk about her, [and over the years, things got worse].

For more than a decade, the young woman moved in and out of hospitals for treatment. Her symptoms included visual and auditory hallucinations, as well as delusions that prevented her from living a normal life.

Devine was eventually diagnosed with schizoaffective disorder, which can result in symptoms of both schizophrenia and bipolar disorder. She also was diagnosed with intellectual disability.

She was on a laundry list of drugs — two antipsychotic medications, lithium, clonazepam, Ativan and benztropine — that came with a litany of side effects but didn’t resolve all her symptoms...

She also had lupus, which she had been diagnosed with when she was about 14, although doctors had never made a connection between the disease and her mental health...

Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior. By October, there were already dramatic signs of improvement.

“She was like ‘Yeah, I gotta go,’” Markx said. “‘Like, I’ve been missing out.’”

After several treatments, Devine began developing awareness that the voices in her head were different from real voices, a sign that she was reconnecting with reality. She finished her sixth and final round of infusions in January.

In March, she was well enough to meet with a reporter. “I feel like I’m already better,” Devine said during a conversation in Markx’s office at the New York State Psychiatric Institute, where she was treated. “I feel myself being a person that I was supposed to be my whole entire life.” ...

Her recovery is remarkable for several reasons, her doctors said. The voices and visions have stopped. And she no longer meets the diagnostic criteria for either schizoaffective disorder or intellectual disability, Markx said...

Today, Devine lives with her mother and is leading a more active and engaged life. She helps her mother cook, goes to the grocery store and navigates public transportation to keep her appointments. She is even babysitting her siblings’ young children — listening to music, taking them to the park or watching “Frozen 2” — responsibilities her family never would have entrusted her with before her recovery.

Expanding the search for more patients

While it is likely that only a subset of people diagnosed with schizophrenia and psychotic disorders have an underlying autoimmune condition, Markx and other doctors believe there are probably many more patients whose psychiatric conditions are caused or exacerbated by autoimmune issues...

The cases of April and Devine also helped inspire the development of the SNF Center for Precision Psychiatry and Mental Health at Columbia, which was named for the Stavros Niarchos Foundation, which awarded it a $75 million grant in April. The goal of the center is to develop new treatments based on specific genetic and autoimmune causes of psychiatric illness, said Joseph Gogos, co-director of the SNF Center.

Markx said he has begun care and treatment on about 40 patients since the SNF Center opened. The SNF Center is working with the New York State Office of Mental Health, which oversees one of the largest public mental health systems in America, to conduct whole genome sequencing and autoimmunity screening on inpatients at long-term facilities.

For “the most disabled, the sickest of the sick, even if we can help just a small fraction of them, by doing these detailed analyses, that’s worth something,” said Thomas Smith, chief medical officer for the New York State Office of Mental Health. “You’re helping save someone’s life, get them out of the hospital, have them live in the community, go home.”

Discussions are underway to extend the search to the 20,000 outpatients in the New York state system as well. Serious psychiatric disorders, like schizophrenia, are more likely to be undertreated in underprivileged groups. And autoimmune disorders like lupus disproportionately affect women and people of color with more severity.

Changing psychiatric care

How many people ultimately will be helped by the research remains a subject of debate in the scientific community. But the research has spurred excitement about the potential to better understand what is going on in the brain during serious mental illness...

Emerging research has implicated inflammation and immunological dysfunction as potential players in a variety of neuropsychiatric conditions, including schizophrenia, depression and autism.

“It opens new treatment possibilities to patients that used to be treated very differently,” said Ludger Tebartz van Elst, a professor of psychiatry and psychotherapy at University Medical Clinic Freiburg in Germany.

In one study, published last year in Molecular Psychiatry, Tebartz van Elst and his colleagues identified 91 psychiatric patients with suspected autoimmune diseases, and reported that immunotherapies benefited the majority of them.

Belinda Lennox, head of the psychiatry department at the University of Oxford, is enrolling patients in clinical trials to test the effectiveness of immunotherapy for autoimmune psychosis patients.

As a result of the research, screenings for immunological markers in psychotic patients are already routine in Germany, where psychiatrists regularly collect samples from cerebrospinal fluid.

Markx is also doing similar screening with his patients. He believes highly sensitive and inexpensive blood tests to detect different antibodies should become part of the standard screening protocol for psychosis.

Also on the horizon: more targeted immunotherapy rather than current “sledgehammer approaches” that suppress the immune system on a broad level, said George Yancopoulos, the co-founder and president of the pharmaceutical company Regeneron.

“I think we’re at the dawn of a new era. This is just the beginning,” said Yancopoulos."

-via The Washington Post, June 1, 2023

[ronkeyroo]

I'll 𝐛𝐫𝐞𝐚𝐤 through concrete Past the dirt and through the cracks There will be 𝙣𝙤 surface that keeps me down

[hussyknee]

The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was. Her name was April Burrell. Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself. April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality. “She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries reminiscent of a scene from “Awakenings,” the famous book and movie inspired by the awakening of catatonic patients treated by the late neurologist and writer Oliver Sacks. Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain. After months of targeted treatments — and more than two decades trapped in her mind — April woke up. The awakening of April — and the successful treatment of other peoplewith similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions. Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery. And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed. Although the current research probably will help only a small subset of patients,the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated. “These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.”

– A catatonic woman awakened after 20 years. Her story may change psychiatry.

[blitzsicedcoffee]

Having a disability is SO FUN guys. Did you know that everyone around you (except my loving husband) will constantly tell you to go back to work and just "push through the pain", even though you literally can't stand for more than five minutes or focus or have to take a nap every four hours?

Did you know that every time you use a mobility aid, they'll ask if you REALLY need it? (which is why I've been using it since June but not around my mom til now :) )

Did you know that just to get paid from the disability that YOU PAY FOR while you were working, you'll have to fill out like 12 different papers and have your doctor fill out the same papers like five times to "prove" that you're disabled, and if you happened to be seeing them for anything related to your current condition, they could deny you anyway? Isn't that just awesome?

Doesn't all of this sound SO ABSOLUTELY AMAZING AND FUN????!

[burythecarnival]

i am such a stressed out little ghost. the last week has cast a dark energy on me & i am so fucking exhausted. recovering from my biopsy, pain-somia, medical horror nightmares, juggling getting my prescriptions, feeling just...really disheartened. now on top of everything, i need to take boba fett, my calico angel, to the vet tomorrow. she has been my little best friend for fourteen years & i know something is wrong.

i have also felt so fucking badly about myself & it is getting v hard to practice kindness to myself. i am on the verge of building a pillow fort to hide & cry in.

any help is immensely appreciated 🖤 i know money is tight for plenty of you; please do not apologize if you cannot donate! i appreciate you & just the fact that you genuinely care. i feel safe here.

luv, cuddles & cauldron bubbles, the ghost queen 👻

✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨✨

cashapp: $dryboneslive / venmo: dryboneslive

paypal: message me for email

[hannahcrazyhawk]

We live in a world where chronically ill and disabled humans seeking help are treated like criminals. No one should feel like they need lawyers to litigate for their bodies and minds.

[consolecadet]

Safe Foods

2024

Aluminum foil, stone clay, Hershey’s kisses wrappers and plumes, found objects, cardstock, spray paint, acrylic paint, glass microbead paint

inspired by David Seltzer, Sea Salt/Lemon Sage

With celiac disease, every meal is a risk. Gluten hides everywhere, from restaurant griddles to soy sauce and licorice. Since my diagnosis, I’ve identified “safe foods” I can always trust not to set off an intestine-destroying immune response: whole fruit, plain potato chips, most hot dogs, Hershey’s chocolate. When I’m stranded and hungry, I look for them. Drawing on the bright colors and abstract inedibility of David Seltzer’s Sea Salt/Lemon Sage, I made my safe foods easier to find by rendering them in an ANSI-inspired worksite safety palette. Use the headlamp for the full high-visibility experience.

Exciting news: This sculpture is on display at the ArtsWorcester gallery show Feast: Call and Response with the Fitchburg Art Museum through April 21, 2024.

Even more exciting news: the Fitchburg Art Museum selected it, along with nine other pieces from the show, to exhibit this summer!

[ladylucksrogue]

I don't write a lot if these kinds of posts but I had a bit of a health scare this past week. I'll preface and say that I'm doing better.

Maybe this will help someone recognize symptoms a bit better than I did, because it really could have gone horribly wrong.

I have several medical issues, including an autoimmune condition called SLE (systemic lupus erythematosus) which I've had for a long time and is well managed. I also used to work in the medical field, and know my body fairly well. As with many people that have lupus, I unfortunately am a bit jaded with certain symptoms because it's always, is it just your lupus or is it something you should go to the doctor for? Because honestly, I've gone to the doctor so often only to hear, yup, lupus.

That being said, my meds make me susceptible to catching every little thing that goes around.

So when I woke up with a stomach ache, I was just like great, a stomach bug. It kept getting worse. Knew it wasn't appendicitis because it was literally my stomach cramping.

It got so bad that I was like I have to go to the hospital because it was literally radiating to my back and I couldn't stand up straight.

It wasn't until I was at the hospital, where they at first assumed it was the stomach flu, that I mentioned the pain in my back too, where they took me seriously. Thought it was my gall bladder (mine was removed). And then mentioned pancreatitis.

I mean I know of it. But I've never seen a case except in a dog. Never thought about it. So blood tests, ultrasound, other tests ensued.

Of course me on google, researching. And then the 40 percent mortality rate in combination with lupus jumped out at me. It's been a rare thing where I've ever been confronted with something so serious. My labs looked too good, Ive had that happen so often in my life. My labs are good till they aren't. I was sent home, with pain meds, waiting on other labs. I finally got clearance yesterday. It's not pancreatitis. I have blood and protein in my urine, nothing new, and although a kidney infection sounds scary it's familiar territory. Still not sure why my stomach was affected. No one knows, mysteries of life.

Everyone knows certain symptoms, like if your right side hurts, could be appendicitis. Medical emergency.

No one talks about pancreatitis though, the symptoms or that it can be literally life threatening too. So consider this my little PSA. I might not have actually had this, but the scare is enough for a lifetime.

Take care out there everyone and stay healthy.

[rigormortisangel]

no semester is complete without me missing at least half the classes because my body doesnt work

[crimeronan]

bravely spent my whole morning going to doctor appointments and getting blood siphoned out of my body. guess who now has an urgent referral to an infection specialist 👍

[ribsr]

Guys I have a really high platelet count as well as a huge amount of ethyl in my blood but I haven’t consumed alcohol in a month, does anyone know what’s up????

[hussyknee]

Somehow always manage to forget how painful a flare is until one hits. And then it's like. yeah. An inflamed and swollen large bowel with ruptured ulcers is agonizing.

[blitzsicedcoffee]

Yep.

Rheumatologist left a message saying I have autoimmune thyroid disease or Hashimoto's.

It just gets worse over time but the problem is that it's hormone based and my hormone is still in "normal" range even though I'm feeling a fuck ton of symptoms.

So they can't treat it til my thyroid fails.

Family curse gang rise up lol

[burythecarnival]

i am quite behind on answering messages; thank you for being patient with me.

my pain has been fucking out of control & i feel like i am spiraling. i hate that i have been in hospital twice in a month. i hate scleroderma wrecking my body. i hate that on top of chronic migraines, i get brutal ice pick headaches now & they are so debilitating. i hate that i feel like i am corroding from the inside-out from my arthritis. i hate the random bouts of edema that are apparently "just something i have to deal with now."

for those who check on me, your care is so appreciated. the pain, extreme fatigue & nausea have just been overwhelming. i have a few different medical appointments the next couple of weeks & can hopefully gradually get back to making content.

tips & donations are incredibly appreciated but, please only give if you can afford to. take care of yourself first. the fact that people genuinely care means so much 🖤

cashapp: $dryboneslive / venmo: dryboneslive

luv, cuddles & cauldron bubbles, the ghost queen 👻

[declaweddisabledpurebred]

Bowie & Xander [Original Post]

Bowie: Senior (16 Years) | Spayed Female | Domestic Longhair

Xander: Senior (13 Years) | Neutered Male | Domestic Shorthair

Bowie and Xander are a bonded pair and must be adopted together.

Bowie and Xander would do best in a home without small children.

Xander has a history of urinary obstruction and is on a canned food only diet.

Xander has chronic pancreatitis but no recent flare-up’s.

Bowie has an autoimmune condition called pemphigus foliaceous and is on medication daily.

Available In: Edmonton, Alberta (Canada) [ARTS Senior Animal Rescue]

Meeko & Marge [Original Post]

Meeko: Senior (15 Years) | Neutered Male | Domestic Shorthair

Marge: Senior (10 Years) | Spayed Female | Domestic Shorthair

Meeko and Marge are a bonded pair and must be adopted together.

Meeko has renal disease (stage 2).

Marge is overweight and is on a weight loss diet.

Meeko & Marge would do best in a home without dogs.

Available In: Calgary, Alberta (Canada) [ARTS Senior Animal Rescue]

Posted on March 27th 2024