Discover and read the best of Twitter Threads about #lupus

Most recents (24)

Wait, so you're telling me that @realDonaldTrump can get hydroxychloroquine (plaquenil) because he "feels" it will help him while, meanwhile, SLE patients like me were told to RATION our prescriptions because of the shortage that he induced?? #lupus
To those autoimmune patients (SLE, RA, Lyme, Sjögren’s, and the rest of us) who are in the same struggle- thank you for your support and for your stories. I still have limited hydroxychloroquine (my refills were cut from a 3-month supply to a 1-month supply) 1/14
I did not lie about having to ration my hydroxychloroquine (HCQ) dosage. Typically, I take 150mg. I was told by my rheumatologist to reduce to 100mg per day and, if I was not in a flare, to do 100mg every other day. 2/14
Read 17 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 36 tweets
Here is latest data on #Hydroxychloroquine. #AnthonyFauci is right, we have little data now to support its use. The idea that #PeterNavarro thinks otherwise, has ear of @realDonaldTrump should frighten you. It means science doesn't matter @WhiteHouse. 1/ annals.org/aim/fullarticl…
If you don't believe @AnnalsofIM, European regulators too are dubious about #Hydroxychloroquine & won't approve it. Why? Because again, the data simply isn't there. Difference? EMA isn't subject to political pressure from out-of-control @POTUS who doesn't believe in science. 2/
Here's @FiercePharma report on EMA decisions: fiercepharma.com/pharma/europe-…
Read 6 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
@Thomasmarkelly @thehowie @DemFromCT I am opposed to widespread use of meds or med combos tested in only a small number of patients and in non-controlled trials. Rationale for these drugs is based, again, on small and non-randomized studies looking at HCQ for #MERS and macrolides for #Ebola and #Zika
@Thomasmarkelly @thehowie @DemFromCT There is some in vitro activity of chloroquines against #COVID19, but in vitro activity doesn’t always equate to in vivo
@Thomasmarkelly @thehowie @DemFromCT So far, based on these small cohorts, this drug combo has only been shown to reduce duration of symptoms, like Tamiflu does for influenza.
Read 5 tweets
Antimalarial thread: As someone who has been on antimalarials off and on for 20 years for #Lupus treatment, I can tell you a lot more about these class of medications. #COVID19 @HopkinsMedicine.
1. You cannot simply start taking them without a comprehensive risk assessment and baseline eye exam.

2. These are not drugs that to take lightly because they can cause and have cause blindness among other things.
3. Any doctor prescribing these medications as a precaution against this virus is unscrupulous and should be reported to their state medical board.
Read 9 tweets
It’s #IWD2020 - a day to celebrate women and their achievements, as well as highlight the inequalities still faced. Here’s a selection of stories published on WalesOnline today, all written, edited and published by women #EachforEqual 💜
Is life equal for women in Wales? These are facts | @ruthmosalski

Read here: walesonline.co.uk/news/wales-new…
“It’s women helping other women at their most vulnerable"

The incredible work of baby banks in Wales | @laurajclem

walesonline.co.uk/news/wales-new…
Read 13 tweets
What's in a name?
Why @WHO's formal name for the new #coronavirus #disease matters:

time.com/5782284/who-na…

#COVID19 #Covid_19
1. Wash your hands often and/or use hand sanitizer more frequently.

2. Try not to touch your face... 🙈

3. Cough into your shirt or arm.

4. Stay home when you are sick.

5. WASH. YOUR. HANDS!

#COVIDー19
#COVID19
#coronavirus

toronto.citynews.ca/video/2020/02/…
Read 12 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
#NAAM day 25.

I'm gonna be talking today about chronic illness, and periods, and arthritis, and other such things.
I may get a little into mental health as well, however the bulk of this is going to be about things like chronic illness, and periods.

So, if period talks are not your thing... you should mute this thread.
I talked about the intersection of illness and adoption in terms of diagnoses and lack of medical history already.

That's here:
Read 28 tweets
Log for day 14 of #NAAM today intersects another fun fact about me.

I have #lupus and on a bad day, it can be debilitating.
The intersection of chronic illness and adoption?

Lack of medical history and the high propensity to carry genetic disorders that you do not know you have.
Am I saying that adoption causes diseases illnesses and problems that are inherited genetically?

No.
Read 9 tweets
1/
Hi hi hi. We see lots of red flags on a daily basis when we review labs.

One thing we see commonly is #lymphopenia. Should we care? When can we dismiss it and when should we work it up?

Let’s find out.

#MedEd #MedTwitter #IDTwitter #Tweetorial #oncology
2/
- Lymphopenia assc w/ ⬆️risk of sepsis
- More common in elderly and w/ co-morbidities
- lymphs account for 20-40% of WBC, may go unnoticed when WBC checked w/o diff
- Primary- recurrent infxns in kids, CVID in adults
- Secondary-⬇️production; ⬆️destruction; hiding in tissue
3/
What is the most common cause of lymphopenia in hospitalized patients?
Read 14 tweets
On Saturday 12th October, we celebrated #Dayofthegirl2019 and simultaneously spotlighted #Lupus through @Sheblossoms. Lupus and many auto-immune diseases primarily affect women of color between the ages of 15 and 44.
@Sheblossoms Our all female line-up consisted of Shae Gibenzi and Shikkiey with a special appearance by GJ the Trap Queen. Our audience consisted of a female dance troupe from Korogocho, courtesy of Nuru Afrika who are a key partner in our Peace Builders Program.
@Sheblossoms The following images are from the last She Blossoms 2019, courtesy of @OnkeoRonny who is our Peace Builders Program photographer. The 2019 theme for International Day of the Girl was Girl-Force: Unscripted and Unstoppable.
Read 21 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
CUTANEOUS LUPUS – a #tweetorial/#medthread!!

We all learn about Systemic Lupus Erythematosus (SLE) in medical school, but did you know there are multiple forms #lupus can take in the #skin?

#Meded #FOAMed #dermtwitter #medtwitter #rheumtwitter #dermatologia pc: @dermnetnz
1/
It wasn’t until #dermatology residency I learned about all the subtypes of cutaneous lupus (CLE)! I thought it was all just one disease: SLE. But in reality there are many forms of CLE, each with its own implications on systemic involvement and effect on the patient.
2/
Let’s start with the 3 subtypes:
Acute, Subacute, and Chronic Cutaneous Lupus Erythematosus (ACLE, SCLE, CCLE). CCLE is aka Discoid.
Each subtype "overlaps" with SLE in a different way.

Eg: ACLE overlaps completely with SLE, so they all have SLE! 👇
onlinelibrary.wiley.com/doi/abs/10.111…
3/
Read 17 tweets
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 tweets
🚨🚨The lies about the Trump Administration wanting to #ProtectOurCare stop TODAY! The dismantling of the law of the land has been going on since day 1 of this Administration to remove protections for 130M w/#PreExistingConditions

(THREAD) 1/
After failing to repeal the #ACA in Congress in 2017, in 2/2018, 18 @GOP AG's & 2 GOP Governors Filed a Lawsuit to Repeal the #ACA in the U.S. Northern District of TX. 2/
.@GOP officials claim since #ACA’s individual mandate fine was repealed in 2017 tax law, the mandate can no longer be considered a “tax.” b/c of this change, they argue the mandate is now unconstitutional & the entire ACA must be struck down.

These are their names. 3/
Read 13 tweets
I think you've once heard of a disease by the name 'Lupus' This being #LupusAwarenessMonth, Here are some facts just to help you understand about #Lupus. Go through it and please Retweet,

THREAD!
#Lupus is a systemic autoimmune disease that can damage any part of the body. The body's immune system mistakes the healthy cells and tissues as foreign and starts to attack them. It is a chronic disease, meaning once you develop it, you'll have lupus for the rest of your life.
There are around 4 types of Lupus namely, Systemic Lupus Erythematosus(SLE)which affects all systems, Discoid L.E whose symptoms only affect the skin, Drug induced due to a reaction to some drugs and finally Neonatal Lupus(Born from a mother with it)

#Lupus #LupusAwarenessMonth
Read 14 tweets
There is so much to unpack about gender and #chronicillness, I barely know where to begin. But let's give it a go. Data THREAD first, personal experiences second. (1/9) #millionsmissingspeakout #pwME @MEActNet
Up until very recently, the majority of medical research has been performed on men. It used to be against the law to include most women in clinical trials. Even after that law was overturned, a second had to be enacted requiring we be included. #pwME (2/9) tinyurl.com/y35rtwzv
The difference in the way women present symptoms and the ignorance around this kills.
When women have heart attacks, for example, the typical symptoms veer sharply from what med students learned from their textbooks. (3/9) #millionsmissingspeakout #pwME psmag.com/social-justice…
Read 9 tweets
👋🏽It's May so *clears throat* lllllllleeet's get ready to #LupusAwarenessMonth

If all goes as planned (spoiler: there is no actual fucking plan) you're gonna learn something you didn't know April 30th about ✨the lupus life✨
For no reason other than I spent the day in this l'il space age container doing a pulmonary function test 🧐jealous? Let's kick it off with LUNGS:

(💜 Also fact, purple is the color o' #Lupus)
(💜If you have had Lupus lung experience, please, tell the kids how it feels)
DYK 🌞&💡are pretty damn dangerous to about 1 million Americans who have Lupus? #ThisIsLupus #LupusAwarenessMonth #LupusChat #LupusLiving
(2)
Read 8 tweets
💥 Hydroxychloroquine - is an
Anti-malarial drug that also has immunomodulatory properties
⚡️It is used to Rx auto-immune conditions
⚡️The origin and history of this drug is as fascinating as it’s benefits
1/
@RenalFellowNtwk
#Lupus
#medtwitter
💥 Quinine was 1st found in the bark of the ‘Cinchona’ tree by the Inca in Peru to Rx ‘shivering’
⚡️It is believed that the tree got its name ‘Cinchona’ after it was used to treat the ‘Countess of Chinchon’ for a febrile illness in the 1630s
2/
💥 In the early days, the Cinchona bark tree powder was called the ‘Jesuits Powder’ (and not Quinine)
⚡️However, this 👆🏽is why side effects from quinine - such as tinnitus, headaches and poor vision are referred to as ‘Cinchonism’
3/
Read 19 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets

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