Discover and read the best of Twitter Threads about #lupus

Most recents (24)

Thread 🧵👇:
After so many years of work and as a post Epstein-Barr virus infection #MECFS sufferer it makes me really happy that they have put our article on the cover of the August issue of Pathogens journal 👉:mdpi.com/2076-0817/11/8
(1/)
Until recently nobody talked about post-viral syndromes (actually they should be called chronic infectious syndromes) and they left all of us patients isolated both at a health and social level. Unfortunately it took another virus like #SARSCoV2 to show us how viruses are ...(2/)
...capable of developing chronic diseases like #LongCovid . It is curious that for bacterial infections we use antibiotics but for viral infections we leave it to our immune system to manage to control it. This must change. (3/)
Read 15 tweets
A long thread 👇🏼:
I would like to share with you my latest review article. The Epstein-Barr virus (EBV) has long been known to be behind the development of autoimmune diseases, cancer and is even suspected to be behind the development of Chronic Fatigue Syndrome/… (1)
…Myalgic Encephalomyelitis and Long COVID. But it is still unclear what pathways it uses.

In this review I describe how the possession of certain ancestral HLA-II alleles (a system used by our immune system to recognize which proteins are foreign,… (2)
…such as pathogens, and which are not) makes the individual genetically weak to control EBV latent cells, thus developing different diseases. EBV infects B cells through a protein on its surface called gp42, which allows it to bind to HLA-II molecules on the B cell surface. (3)
Read 23 tweets
Methotrexate is an important part of lupus care. We are aware of reports that some people are having difficulty accessing methotrexate in the wake of the Supreme Court’s ruling in the Dobbs case. Image
The health of all people with lupus is of utmost importance to the Lupus Foundation of America. We are working with our Medical-Scientific Advisory Council to guide our efforts going forward so we can help ensure that people with lupus have access to the treatments they need.
If you are a person with #lupus experiencing challenges accessing #methotrexate (#MTX), please email access@lupus.org with details of your experience.
Read 3 tweets
i’ve never had an abortion but my access to healthcare has changed because Roe was overturned.

I have #Lupus which is an inflammatory autoimmune disease that causes my immune system to attack my organs, joints, skin, and muscles.

i take #Methotrexate as one of my treatments
i received an email from my rheumatologist today that they are stopping all refills of methotrexate because it is considered an abortifacient.

Methotrexate is a form of chemotherapy. But in reduced quantities it can be taken long term to help with many autoimmune diseases.
Roe was overturned 6 days ago. in less than one week i lost access to healthcare that i need because the drug could be used to induce abortions.

it took 144 hours for me to have less safe healthcare because Roe was overturned.

Don’t tell me you’re pro-life.
Read 16 tweets
When Clarence Thomas was nominated for the Supreme Court in 1991, Black feminists were some of the only people who were willing to publicly stand with Anita Hill. They were some of the only Black people who were willing to critique Thomas publicly.
African American Women in Defense of Ourselves purchased a full pg ad in the NYTimes. Dozens of Black women signed their names to it.

Many of those Black women were sent dozens of death threats from Black men + Black women who said they “didn’t play” about protecting Black men.
You can imagine, many of those Black women academics, activists, and students, never spoke out publicly again. In protecting Black people, they were not protected by the Black community in the U.S.

bates.edu/news/2018/01/2…
Read 13 tweets
There is a lot of confusion about what #LymeDisease tests under the #CDC #twotier standard are actually designed to diagnose. I’d like to elucidate for all but am feeling kinda lazy, lol. Let’s see here. 1/x
Some think #lymeDisease diagnostics are geared toward #earlylyme only, while some say #latelyme or #LymeArthritis. It’s more specific than that & there is a reliance on timing & interpretation of results to exclude as many cases as possible. 2/x
First of all, one must understand that #LymeDisease & diagnostic test outcomes vary based on people’s genetic makeup, among other factors. People with certain HLAs (studied in-depth by #AllenSteere) tend to have a stronger immune response. 3/x
Read 13 tweets
💊1/When you're in BC, it feels like The Amazing Race for Paxlovid if you test Cov+🦠and elig for this antiviral.😏Here's my experience. #BCpoli Yup, for those who hv seen my prev tweets, after my son caught Covid fr #BCed school 2 wks ago & ripped through all my fam, 🦠got me🤦🏻‍♀️
💊2/Tested 05/24, a faint T-line so once I saw Cov+ I knew had to act fast, due time sensitivity Paxlovid must be taken within 5-7d of symp (already helped dad get a box last wk)so I made calls to pharms to confirm who has ONE box(yes, seems many only gets 1 at a time) Found one
3/at Shoppers but within 5m they clbk that box is gone as just recvd a fax Rx for it. May hv 1 arrive 05/26. Next, get hold of a GP for prescription. My doc is overbooked, not avail til 26th. Called 1-888-Covid-19, person got my info, confirmed elig & said may take @Protect_BC
Read 8 tweets
Announcing 23 Allen Distinguished Investigator awards —representing $15.5M in total funding— aiming to advance #FrontierScience in: neural circuits of under-studied organisms, advances in mammalian synthetic biology & micropeptides involved in immunity 🧵1
alleninstitute.org/what-we-do/fro…
Allen Distinguished Investigator Robyn Crook @SFStateBIO is leading a project to study the neural control of movement in cephalopods, animals that have the most complicated nervous systems of the invertebrate world. #FrontierScience 🐙
alleninstitute.org/what-we-do/fro… 🧵 2 Image
How does a new kind of behavior arises in evolution? Allen Distinguished Investigators @neuroluci, & @SGRodriques at @TheCrick are studying larvae brains of a species of fruit fly that have evolved to jump 10 times their body length. #FrontierScience alleninstitute.org/what-we-do/fro… 🧵 3 Image
Read 13 tweets
KABAR BAIK!!! Penyintas Lupus aman untuk Vaksinasi Covid-19.

Survei terkini terhadap 696 orang penyintas #lupus di Eropa menunjukkan vaksinasi Covid-19 aman untuk diberikan. Pada survei ini menggunakan vaksin seperti Pfizer, Sinovac, AstraZeneca dan Moderna.

@Lupusreference ImageImage
@Lupusreference Survei ini menunjukkan vaksinasi Covid-19 tidak sebabkan flare pada penyintas lupus dan gejala ikutan pasca vaksinasi serupa dengan masyrakat umum. Sebagian besar gejala ringan/sedang, seperti nyeri lokasi suntikan dan pegal-pegal, serta tidak mengganggu aktivitas sehari-hari. ImageImage
Selain itu hanya 3% dari yang mendapatkan vaksinasi mengalami kekambuhan, dan hanya 0,5% membutuhkan perawatan karena kekambuhan. Sebagian besar kekambuhan berupa gejala sendi (90%) dan kelelahan (80%), semua sembuh sempurna. ImageImage
Read 6 tweets
Today I gave version 1.0 of a rheumatology emergencies lecture to @BU_BMC_Rheum fellows. Thanks to @AlisonBays & @joannamarco for ideas.

I'd like to figure out an integrative way to supplement the talk with #tweetorials
@BU_BMC_Rheum @AlisonBays @joannamarco One of the cases was lupus nephritis (with a preview of other complex lupus manifestations and overlap presentations).

Here is a thread on lupus nephritis:
Can't talk about #lupus without including graphics from @Lupusreference such as this one:
Read 9 tweets
Efficacy and safety of voclosporin versus placebo for #lupus nephritis (AURORA 1): a double-blind, randomised, multicentre, placebo-controlled, phase 3 trial from @TheLancet @BradRovin #NephJC #Nephpearls
#VisualAbstract by @katierizzolo
👉🏼 thelancet.com/journals/lance…
Voclosporin: Hope on the Horizon for #Lupus Nephritis ⁉️ from @KidneyNews February 2021 issue #Nephpearls #NephJC
👉 asn-online.org/publications/k…
AURA-LV: A randomized, controlled double-blind study comparing the efficacy and safety of dose-ranging voclosporin with placebo in achieving remission in patients with active lupus nephritis ca. 2018 from @Kidney_Int @BradRovin #Nephpearls #NephJC
👉🏼 kidney-international.org/article/S0085-…
Read 6 tweets
.@BradRovin speaking on the evolution of #lupus therapy over the years in @isn_india Masterclass
The main change which has happened is to decrease steroids.
Probably 1 gm of MPS is enough to begin treatment in #lupus
Discussing the data on minimizing steroids @BradRovin shows data by @kidneydoc101 which formed the basis of RITUXILUP
Are we going towards NO steroids for #lupus ?
Read 10 tweets
.@isn_india #LUPUS Masterclass begins with an inaugural address by President Dr. Gupta about discussing future goals in lupus nephritis management. He presses the need to go LOW on Steroids especially in the #covid era 1/
Q - When to biopsy in #lupus ?
A - When you want to diagnose, to treat, or to prognosticate
talk by Dr Surya V Seshan
Can u guess the #lupus class by knowing the clinical presentation? Yes, you can!!
Check out this nice summary of various presentations in #lupus #nephpearls
Read 6 tweets
Being a #disabled #nurse is hard - a 🧵 I might delete because this is uncomfortable to share.

I have had #Lupus and several other autoimmune disorders for 20 years and it is frustrating, painful, and at times debilitating.
I don’t talk about my health or what I go through openly because I am afraid that ppl will withhold opportunities or overlook me because I am “sick”. I don't even share how sick I am with most of my family.
I have pretended to be well a lot. Why? Because many nurses and healthcare professionals are ableists. If I don't pretend to be well I am criticized and marginalized. I get treated like a burden when I need accommodations.
Read 12 tweets
O tweet com id 1125866421316214784 de 2019-05-07 20:54:07 que falava sobre:
🇧🇷✌️ O Deputado Federal Nereu Crispim recebeu nesta segunda-feira (06), em seu escritório de Porto Alegre, a visita do Vice-prefeito de Guaporé, Adalberto João Bastian

#NereuCrispim #Guaporé #Prefeiu...
O bot tentou arquivar o tweet nesse link: archive.vn/ah0h9
Read 1881 tweets
1) World With Complex Regional Pain Syndrome
(CRPS) As My Constant Companion

I live in a world with Complex Regional Pain Syndrome (CRPS) as my constant companion. Physicians don’t know why it develops, but #CRPS is a nerve disorder that
2)usually occurs after a traumatic injury, surgery, sprain, fracture, infection or a period of immobilization. CRPS/RSD is said to be the most painful chronic disease that’s known today. On the McGill #Pain Index it (Causalgia) scores 42 out of 50.
3)How does that compare to other types of pain and/or chronic pain conditions? #Arthritis pain is ranked about 18, Non-terminal Cancer pain at 24 and Chronic Back Pain is at 26. Natural labor and delivery of a 1st child is about 35. With a score of 40, the pain associated
Read 31 tweets
Did you miss the talk "Panorama of #lupus in 2020?" I did yesterday for @LupusEurope?

No worries, I'm starting a #tweeter #SLE #thread so that you can pick up the slides you're interested in 👍

Check below for the SLIDES ⬇️
Slide #1
Current classification of #Lupus
Slide #2
What is #lupus #SLE
#Lupusawareness
Read 18 tweets
[Your opinion needed]
I have learned how to manage my #Lupus and #Hashimotos naturally. For nearly 2 years, I've shared a thread about this (see attached). Now I'm ready to unpack this and add how I am keeping my symptoms in remission. /1 #newblog
I'm finally ready to write my #blog series:

"Everything I use to maintain my health and keep my #autoimmune symptoms in remission."

Do you also seek ways to take back control and possibly improve your own diagnosis?

Then please answer my short POLL⬇️

#lupus #hashimotos /2
Please ANSWER #POLL⬇️

Managing #autoimmune conditions is tough. Even though I had many healthy habits, I still had to change the way I was living to enjoy improvements. That said:

What do you want to improve to experience better health right now?

#lupus #hashimotos #blogger
Read 3 tweets
21/ #ZelenkoProtocol

1. Abstract Conclusion = Zinc helps
2. But: Paragraph 2 under METHODS
3. Essential to read study's methods

"Patients were *included* if ... had either been discharged from the hospital, transitioned to hospice or expired"

Full PDF:
drive.google.com/file/d/1XkIHqV…
22/ #Hydroxychloroquine & #Chloroquine & #Azithromycin

Norwegian Medicines Agency published a Warning April 23 & updated it on May 6.

Translates perfectly to English:
bit.ly/3fBSN5b

Citations:
medrxiv.org/content/10.110…
medrxiv.org/content/10.110…

#TrumpLiesAmericansDie
23/ #Remdesivir & #Vaccines & #SARSCoV2 & #COVID19

Norwegian Medicines Agency reports:

"Investigations started in Europe"

EMA - Remdesivir:
ema.europa.eu/en/news/ema-st…

NMA - Medicines & Vaccines:
legemiddelverket.no/english/covid-…

#TrumpPressConf #TrumpLiesAmericansDie
Read 25 tweets
1/ Little Thread about all The Misleading Medical Information still floating around about #Hydroxychloroquine & #Chloroquine & #Azithromycin & #ZelenkoProtocol - by 1 doctor - @zev_dr & #Remdesivir & more

Despite #TrumpIsNotADoctor has stopped saying "What do you have to lose?".
2/ #TrumpIsTheWORSTPresidentEVER

First, why it has been political all the way, suspected from day one:

"Trump had been touting HCQ for weeks, sparking worldwide shortages of HCQ & prompting negotiations with Indian PM Modi to lift export restrictions"

vanityfair.com/news/2020/04/i…
3/ #Trump2020

Indian PM Modi and Trump held a rally together.

"Mr Trump wanted to show people in the US that he was hugely popular abroad and that he was capable of negotiating good deals out of a country he once described as the king of tariffs"

bbc.com/news/world-sou…
Read 45 tweets
Patients with autoimmune diseases, such as #lupus and #RheumatoidArthritis, are having trouble filling their prescriptions since Trump touted their medicine as an experimental treatment for #Covid19. /thread news-journalonline.com/news/20200405/…
“The hasty and inappropriate interpretation of the literature by public leaders has potential to do serious harm" write 2 rheumatology experts in the Annals of Internal Medicine. annals.org/aim/fullarticl…
FL pharmacists report "nearly all of the new prescriptions for #hydroxychloroquine are being issued for the prescribing practitioners themselves or family members of the prescribing practitioners." Some drs are prescribing it to healthy people as a #Covid19 preventative.
Read 12 tweets
Donald J. Trump's misinformation campaign contd in today's presser, jeopardizing lives in the process. I wish I had counted how many times he recklessly played Dr. today, prescribing Rx cocktails for people against COVID-19, asking "What do you have to lose?" Really? Their lives!
Further, many of those living with #Lupus are already struggling to access the meds they need to remain healthy & alive due to reckless guidance he previously offered. Can someone please mute his mic or just limit the Q&A to Fauci? This is criminal, all of it!
Those with rheumatoid #arthritis too. The last time Trump asked the American people, Black folx in particular, "What do you have to lose?" We know how that went. We are living the dire & draconian answer by the hour.
Read 6 tweets

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