Neuro Sjogrens
@neurosjogrens.bsky.social
Advocate for NeuroSjogrens & assorted other chronic illnesses. Posts articles & re-posts items this acct is interested in. Advocacy rather than advice.
I think I'll have my salivary/tear glands removed so all of my Sjogrens probs will go away & I can return to work and complete all the daily life tasks life requires.
February 10, 2025 at 7:25 PM
I think I'll have my salivary/tear glands removed so all of my Sjogrens probs will go away & I can return to work and complete all the daily life tasks life requires.
Is it happenstance that GLP1 agonists are associated w increased NeuroSjogrens GI symptoms like gastroparesis, nausea, vomitting & heartburn? & Non GI symptoms like hypotension, arthralgias & headaches?
www.nature.com/articles/s41...
www.nature.com/articles/s41...
January 23, 2025 at 1:00 PM
Is it happenstance that GLP1 agonists are associated w increased NeuroSjogrens GI symptoms like gastroparesis, nausea, vomitting & heartburn? & Non GI symptoms like hypotension, arthralgias & headaches?
www.nature.com/articles/s41...
www.nature.com/articles/s41...
If this report is validated then Avian flu might be spreading in China. This report suggests quarantine facilities are being built & live poultry has been banned from a couple large cities.
www.ntd.com/bird-flu-out...
www.ntd.com/bird-flu-out...
Bird Flu Outbreak Affecting Humans in China Likely Massively Underreported: Microbiologist
While more reports of bird flu are coming out across the globe, experts say China has been hard hit as well—and likely substantially harder than the Chinese Communist Party is willing to report. To fi...
www.ntd.com
January 23, 2025 at 12:55 PM
If this report is validated then Avian flu might be spreading in China. This report suggests quarantine facilities are being built & live poultry has been banned from a couple large cities.
www.ntd.com/bird-flu-out...
www.ntd.com/bird-flu-out...
Medicine is as much a Culture as it is an acolyte of Science. Humans are attatched to their inculturations. This attatchment creates Dogma (no longer living & breathing the new findings at the edges of Science.) Cultures are slow to change. This causes delays in Progress in the Fields of Medicine
November 22, 2024 at 5:09 PM
Medicine is as much a Culture as it is an acolyte of Science. Humans are attatched to their inculturations. This attatchment creates Dogma (no longer living & breathing the new findings at the edges of Science.) Cultures are slow to change. This causes delays in Progress in the Fields of Medicine
A prominent acute dysautonomia flare can go untreated out of 1) a belief there is no altering the damage causing the symptoms & 2) No specialty assumes treating responsibility. Cards thinks its Rheum or Neuro. Rheum thinks it Neuro/Cards. Neuro thinks its Rheum/Cards...
November 22, 2024 at 1:04 AM
A prominent acute dysautonomia flare can go untreated out of 1) a belief there is no altering the damage causing the symptoms & 2) No specialty assumes treating responsibility. Cards thinks its Rheum or Neuro. Rheum thinks it Neuro/Cards. Neuro thinks its Rheum/Cards...
👏👏👏 @dysclinic et al's article clarifying dysautonomia is not FND.
"As medical professionals w expertise in autonomic d/os, we wud like 2 emphasize the distinction bt autonomic d/os, autonomic sxs & FND to ensure that approp dx & tx pathways r implemented by clinicians."
⬇️
"As medical professionals w expertise in autonomic d/os, we wud like 2 emphasize the distinction bt autonomic d/os, autonomic sxs & FND to ensure that approp dx & tx pathways r implemented by clinicians."
⬇️
November 20, 2024 at 3:21 PM
👏👏👏 @dysclinic et al's article clarifying dysautonomia is not FND.
"As medical professionals w expertise in autonomic d/os, we wud like 2 emphasize the distinction bt autonomic d/os, autonomic sxs & FND to ensure that approp dx & tx pathways r implemented by clinicians."
⬇️
"As medical professionals w expertise in autonomic d/os, we wud like 2 emphasize the distinction bt autonomic d/os, autonomic sxs & FND to ensure that approp dx & tx pathways r implemented by clinicians."
⬇️
Gorgeous pics!
Whew! Popping back here briefly to discuss a very eventful few days.
On Sat, a SNOW BUNTING appears at Hayward Regional. 😱 The bird is stunning & super-rare in the East Bay. Many birders go to see it. It's living its best life on a white/brown plastic culvert that it maybe thinks is snow? 1/
On Sat, a SNOW BUNTING appears at Hayward Regional. 😱 The bird is stunning & super-rare in the East Bay. Many birders go to see it. It's living its best life on a white/brown plastic culvert that it maybe thinks is snow? 1/
November 20, 2024 at 5:00 AM
Gorgeous pics!
Sjogrens can be heavy. Distraction can help. If you like things Leonardo da Vinci & things Ken Burns (documentary historian) PBS (in US) will be showing Ken Burns (& dau's) tv documentary of Leonardo da Vinci. Curious to know their interpretation of The Mona Lisa's smile?
November 19, 2024 at 5:51 PM
Sjogrens can be heavy. Distraction can help. If you like things Leonardo da Vinci & things Ken Burns (documentary historian) PBS (in US) will be showing Ken Burns (& dau's) tv documentary of Leonardo da Vinci. Curious to know their interpretation of The Mona Lisa's smile?
Research classification criteria/CC's are designed to find a "represenative group" of patients to study out of All the patients w that disease & apply those findings to All w the disease. Diagnostic Criteria try to diagnose All w disease. This is why CC's fail as DC's.
November 19, 2024 at 5:48 PM
Research classification criteria/CC's are designed to find a "represenative group" of patients to study out of All the patients w that disease & apply those findings to All w the disease. Diagnostic Criteria try to diagnose All w disease. This is why CC's fail as DC's.
Clinicians in The Know about Sjogrens confront the same reality patients do when they try to get other clinicians to see The Reality of Sjogrens. Its exhausting.
"The number of times a POTS lt w other AI disease has dry eyes dry mouth burning neuropathic sounding leg pain & I ask their Rheum
"The number of times a POTS lt w other AI disease has dry eyes dry mouth burning neuropathic sounding leg pain & I ask their Rheum
November 19, 2024 at 5:31 PM
Clinicians in The Know about Sjogrens confront the same reality patients do when they try to get other clinicians to see The Reality of Sjogrens. Its exhausting.
"The number of times a POTS lt w other AI disease has dry eyes dry mouth burning neuropathic sounding leg pain & I ask their Rheum
"The number of times a POTS lt w other AI disease has dry eyes dry mouth burning neuropathic sounding leg pain & I ask their Rheum
Paper:
"Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease"
Pulmonary Ultrasound for Sjogrens.
Scrrenshots of abstract to follow in a 🧵
pubmed.ncbi.nlm.nih.gov/39551149/
"Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease"
Pulmonary Ultrasound for Sjogrens.
Scrrenshots of abstract to follow in a 🧵
pubmed.ncbi.nlm.nih.gov/39551149/
Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease - PubMed
PI may represent a valid tool for the assessment of lung involvement in SjD, particularly for the screening of ILD. PI limited to postero-inferior lung fields seem to maintain good diagnostic accuracy...
pubmed.ncbi.nlm.nih.gov
November 19, 2024 at 4:54 PM
Paper:
"Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease"
Pulmonary Ultrasound for Sjogrens.
Scrrenshots of abstract to follow in a 🧵
pubmed.ncbi.nlm.nih.gov/39551149/
"Pleural Irregularities: a new ultrasound marker for lung involvement in primary Sjögren's disease"
Pulmonary Ultrasound for Sjogrens.
Scrrenshots of abstract to follow in a 🧵
pubmed.ncbi.nlm.nih.gov/39551149/
🚨👀
This NEEDS to be said:
Why The Definition of Sjogrens matters & tests use to define Sjogrens matters. A 🧵
1. The SSA autoantibody is found in lots of disorders & IS NOT necessary for diagnosis of Sjogrens.
2. Dryness is found in lots of disorders/conditions and
This NEEDS to be said:
Why The Definition of Sjogrens matters & tests use to define Sjogrens matters. A 🧵
1. The SSA autoantibody is found in lots of disorders & IS NOT necessary for diagnosis of Sjogrens.
2. Dryness is found in lots of disorders/conditions and
November 19, 2024 at 4:34 PM
🚨👀
This NEEDS to be said:
Why The Definition of Sjogrens matters & tests use to define Sjogrens matters. A 🧵
1. The SSA autoantibody is found in lots of disorders & IS NOT necessary for diagnosis of Sjogrens.
2. Dryness is found in lots of disorders/conditions and
This NEEDS to be said:
Why The Definition of Sjogrens matters & tests use to define Sjogrens matters. A 🧵
1. The SSA autoantibody is found in lots of disorders & IS NOT necessary for diagnosis of Sjogrens.
2. Dryness is found in lots of disorders/conditions and
For NeuroSjogrens to get studied we need actual real diagnostic criteria rather than usung research classification criteria misused as diagnostic criteria. We need to use scales in research that adequately measure Neuro in Sjogrens. We don't even have one of these yet.
@OMERACT
@OMERACT
November 18, 2024 at 6:25 AM
For NeuroSjogrens to get studied we need actual real diagnostic criteria rather than usung research classification criteria misused as diagnostic criteria. We need to use scales in research that adequately measure Neuro in Sjogrens. We don't even have one of these yet.
@OMERACT
@OMERACT
The diagnosis of Sjogrens can be made without sicca/dryness. It can be made without SSA. It can be made without a positive lip biopsy. If we are already cobbling together things that ARE NOT required in Sj to "diagnose" Sj, why not add in systemic disabling things like Neuro?
November 18, 2024 at 6:08 AM
The diagnosis of Sjogrens can be made without sicca/dryness. It can be made without SSA. It can be made without a positive lip biopsy. If we are already cobbling together things that ARE NOT required in Sj to "diagnose" Sj, why not add in systemic disabling things like Neuro?
🚨‼️👀
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease.
www.prnewswire.com/news-release...
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease.
www.prnewswire.com/news-release...
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease
The Breakthrough Therapy Designation (BTD) for investigational nipocalimab in Sjögren's disease, a prevalent autoantibody disease with no approved advanced...
www.prnewswire.com
November 18, 2024 at 1:33 AM
🚨‼️👀
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease.
www.prnewswire.com/news-release...
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease.
www.prnewswire.com/news-release...
FDA has given FDA Therapy designation to Nipocalimab 4 treatment of adults w/ mod-to-severe Sjögren’s. NIPO is an Ab to neonatal Fc receptor (FcRn), & was tested & shown effective in Sj Phase 2 DAHLIAS study - a plenary presentation at #ACR24. (@RheumNow post) buff.ly/4fwfnuy buff.ly/4fwfpTc
Nipocalimab is the first and only investigational therapy granted U.S. FDA Breakthrough Therapy Designation for the treatment of adults living with moderate-to-severe Sjögren's disease
The Breakthrough Therapy Designation (BTD) for investigational nipocalimab in Sjögren's disease, a prevalent autoantibody disease with no approved advanced...
buff.ly
November 18, 2024 at 1:00 AM
FDA has given FDA Therapy designation to Nipocalimab 4 treatment of adults w/ mod-to-severe Sjögren’s. NIPO is an Ab to neonatal Fc receptor (FcRn), & was tested & shown effective in Sj Phase 2 DAHLIAS study - a plenary presentation at #ACR24. (@RheumNow post) buff.ly/4fwfnuy buff.ly/4fwfpTc
Reposted by Neuro Sjogrens
This is actually very exciting for patients with sjogrens
Is an approved treatment (or 2) on the horizon for #Sjogren disease?
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
#ACR24 Year in Review: Targeting T cells through CD40/CD40L may be an effective biological approach to treating Sjogren disease
#ACRambassador #RheumSky
November 16, 2024 at 8:52 PM
This is actually very exciting for patients with sjogrens
Paper: "Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model"
Has anyone trialed low dose IL2 for their Sjogrens?
Abstract to follow.
pubmed.ncbi.nlm.nih.gov/35665339/#:~:t….
Has anyone trialed low dose IL2 for their Sjogrens?
Abstract to follow.
pubmed.ncbi.nlm.nih.gov/35665339/#:~:t….
Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model - PubMed
Sjögren's syndrome (SS) is a systemic autoimmune disease with no efficient treatment, and it is associated with dysregulated immune cells and impaired interleukin (IL)-2 signaling. IL-2 is critical fo...
https://pubmed.ncbi.nlm.nih.gov/35665339/#:~:t…
November 17, 2024 at 4:47 PM
Paper: "Low Dose Interleukin-2 Ameliorates Sjögren's Syndrome in a Murine Model"
Has anyone trialed low dose IL2 for their Sjogrens?
Abstract to follow.
pubmed.ncbi.nlm.nih.gov/35665339/#:~:t….
Has anyone trialed low dose IL2 for their Sjogrens?
Abstract to follow.
pubmed.ncbi.nlm.nih.gov/35665339/#:~:t….
Reposted by Neuro Sjogrens
I hope your preliminary treatment goes well! Just be aware of something I didn't know before now: Seronegative Sjogrens makes your chances of neuropathy go UP. If you're negative on the blood test and the docs try to rule it out, make sure they know/remember that. It would have saved me Years.
December 24, 2023 at 12:39 AM
I hope your preliminary treatment goes well! Just be aware of something I didn't know before now: Seronegative Sjogrens makes your chances of neuropathy go UP. If you're negative on the blood test and the docs try to rule it out, make sure they know/remember that. It would have saved me Years.
Reposted by Neuro Sjogrens
Is it sunburn? Is it Sjogrens flaring? Is it a spotty plague spread by inconsiderate fuckers? Who knows?
Dying Hungry And Thirsty GIF
ALT: Dying Hungry And Thirsty GIF
media.tenor.com
May 13, 2024 at 9:14 AM
Is it sunburn? Is it Sjogrens flaring? Is it a spotty plague spread by inconsiderate fuckers? Who knows?
Reposted by Neuro Sjogrens
you know, colchicine is a terrible drug but wow does it come in clutch when my sjogrens causes ~problems
March 21, 2024 at 3:05 PM
you know, colchicine is a terrible drug but wow does it come in clutch when my sjogrens causes ~problems
Anyone know rules for your acct handle? I have an alert sign saying my handle is invalid. 🤷♀️
November 14, 2024 at 8:05 PM
Anyone know rules for your acct handle? I have an alert sign saying my handle is invalid. 🤷♀️
If only we can liberate research articles & make them all free...
Per this Post below, Libraries & LibrariansARE Wonderful. Udemy courses for free? Sjogrens often gifts us w ...ahem..."free time"...aka disability. Silver lining seeking here. I have more time to learn (even if less capacity.)
Per this Post below, Libraries & LibrariansARE Wonderful. Udemy courses for free? Sjogrens often gifts us w ...ahem..."free time"...aka disability. Silver lining seeking here. I have more time to learn (even if less capacity.)
I know everyone says this, but the amount of STUFF libraries have available digitally is just breathtaking. My library system here in Baton Rouge has thousands of Udemy courses available. And they're free! They're so free.
Libraries are cool. Librarians are cool. Support your libraries.
Libraries are cool. Librarians are cool. Support your libraries.
November 12, 2024 at 2:35 PM
If only we can liberate research articles & make them all free...
Per this Post below, Libraries & LibrariansARE Wonderful. Udemy courses for free? Sjogrens often gifts us w ...ahem..."free time"...aka disability. Silver lining seeking here. I have more time to learn (even if less capacity.)
Per this Post below, Libraries & LibrariansARE Wonderful. Udemy courses for free? Sjogrens often gifts us w ...ahem..."free time"...aka disability. Silver lining seeking here. I have more time to learn (even if less capacity.)
When "checkpoint inhibitor" drugs are used to rev up the immune system to treat cancer they can cause a "Sjogrens like syndrome" including myopathy (motor weakness/heart/respiratory weakness) & myasthenic like symptoms. Per this abstract 40% get acetylcholine/autonomic Autoantibodies! (Cont)
November 12, 2024 at 12:29 PM
When "checkpoint inhibitor" drugs are used to rev up the immune system to treat cancer they can cause a "Sjogrens like syndrome" including myopathy (motor weakness/heart/respiratory weakness) & myasthenic like symptoms. Per this abstract 40% get acetylcholine/autonomic Autoantibodies! (Cont)
Reposted by Neuro Sjogrens
Just a quick note to those new here, if you think someone's post is worth other people reading, repost it. Liking it does not have the same effect here as on the dead-bird site. There is no algorithm. That's one of the reasons we like it.
November 7, 2024 at 9:39 PM
Just a quick note to those new here, if you think someone's post is worth other people reading, repost it. Liking it does not have the same effect here as on the dead-bird site. There is no algorithm. That's one of the reasons we like it.