Lupus & Sjögren's | Live Expert Q&A feat. Dr. Kara Wada
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- Опубліковано 12 кві 2023
- Watch the replay of our Live Expert Q&A with immunologist (and Sjögren’s patient) Dr. Kara Wada to learn all about #Lupus and #Sjögrens!
Did you know that it is estimated that up to 15-18% of people living with lupus also have Sjögren's Disease? Sjögren's is a disorder of the immune system that is usually identified by its two most common symptoms - dry eyes and a dry mouth. Sjögren’s often accompanies other immune system disorders, like rheumatoid arthritis and lupus.
In this live session, Dr. Wada shares her experiences as both a physician and an autoimmune patient, while answering the lupus community's top questions around Lupus and Sjogren's.
To learn more about Dr. Wada, visit www.drkarawada.com!
To my fellow sjogrens sufferers, my optometrist suggested fish oil 1000 mg and Flaxseed oil 1000 mg daily. This would help with dry eyes and mouth. I've been taking for 5 years as well as hydrochloroquine and live in a very dry climate, this has been a lifesaver.
My dentist had attended a dry mouth conference (who even knew there was such a thing?)several years ago and learned of Sea Buckthorn Oil, an omega oil, to help with systemic dryness. I had tried cevimeline and one other prescription medication without relief. Sea Buckthorn has significantly settled my symptoms down and given much relief.
@@carolync6446thank you that's good to know, I have some but am not consistent in taking.
I got plugs put in my drainage holes in the corner of my eyes which means any moisture including artificial tears remains on the eyeballs longer. Try closing your eyes for at minimum of 15 seconds every 10/15 minutes.
Also for dry mouth try sticking the tip of your tongue to the roof of your mouth and hold, works for some people.
I was the annoying paranoid patient. I have hashimoto's and my family has history of celiac. I have been pursuing the diagnosis for 10 months, I started checking my thyroid and that wasn't causing the fatigue. Then I went to a neurologist because I thought that maybe I wasn't sleeping well. I talked to him a little bit, I showed him a sleep exam I took about 4 years ago that didn't show apnea and he told me it was very difficult for me to develop an apnea as severe for me to have that level of fatigue in 4 years.
So I started going to the rheumatologist, I was diagnosed with fibro about 3 years ago when I was derived for dry eyes. I completely ommited that part, I wanted to get tested completely again and not just be brushed off as fibro again.
Long story short (10 months) I did all the bloodwork possible and finally did the lip biopsy. I will start treatment next week. I also had some testing for my peripheral neuropathy and I also have that. We have to advocate for ourselves, doctors just don't worry if you don't seem in pain and discomfort lol.
Hola, hello beautiful world God Almighty bless all ❤️soo sorry u had to face such let down , thank God all things came together for u dr God bless u
I stumbled upon this and glad I did! Thank you!! I have suffered for Many years with lupus and Sjogens. Wish I was closer to your practice as you are very informative and most importantly so comforting not easy to find when dealing with these issues and I was also in healthcare for 35 yrs!
I have lupus and sjogrens I have dry mouth eyes it affects my gums example swelling and discomfort
The biggest problem for me is suffering so long and consistently have positive ANA for both Lupus and Sjorgrens is the lack of input from the doctors!! They just don't seem to want to help you unless your numbers are really high! I'm absolutely frustrated with the attitude where I live! They just ignore you
you are 100 percent right! You have to beg for help, and even then they don't want to do all testing or make the diagnosis
Positive ANA is not specific for SLE and Sjorgrens. Usually positive of 1:640 is lowest level to be taken seriously, maybe 1:320 titre. The diagnosis is a legal statement, it must follow those criteria.
I just found out from my rheumatologist yesterday at work she called me n told me that I I had sjogrens syndrome n she prescribed me some stuff n I go back may 22 2024 for more test
Nancy 😅 18:57 2Giovanni get drafted
I just ask my doctor to check for lupus cause I have it in my family and I'm been so tried..
I did test ana positive
It’s incredibly frustrating as the patient this fixation station within the medical field to divide and conquer and separate into a symptom and then that symptom equals X diagnosis instead of looking at a broader scope clusters and wide splatter of symptoms and then putting it under the bigger umbrella diagnosis and treating the bigger picture drivers.
This need to delineate and micro categorized based on symptoms or smaller clusters of symptoms misses the forest for the trees and misses proper treatment and bigger issues to be sought out.
Those questions of is this my Lupus or is this Sogrens or is this Hashimoto’s or is this… list up to 25-30 names of all the varieties of names of clusters of symptoms that drive autoimmune and inflammation responses yet it likely could be Labeled one or two and then have that one label and then guess what none of these things are rare anymore and then we say this is a symptom of that and let the doctor treat the symptoms and let the patient carried the arch over arching umbrella instead of 1 million different names of illnesses of a little clusters of symptoms which queen honestly makes them look kind of crazy to just about everyone…. The logical mangoes OK how could you have 15 to 20 to 30 different types of medical conditions this is insane no the medical system is insane for calling them all of those varieties are different names because of their need to micromanage Because they have made the medical industry so specialized just like genres of music today that they can’t treat the actual human and it’s fullness form they have to break it down into these little bitty tiny parts and I can only trade this one part and so if you don’t fit into my part I can’t help you and they send you someplace else like to the psychiatrist.
The patient only has so much time in visit with the doctor and now this is insanity so the patient has to put together all of this documentation track everything builder records do all of the work that takes hours upon hours in a lifetime and the doctor only has a few minutes to look at it and they don’t because they’re so precious and you’re not.
Somebody needs to develop an AI that collects all of the data and then concise is it to the degree that someone with a medical degree can actually look at in five minutes of their precious time and come back with the right broadband diagnosis and treatment we really don’t need them we only need good I I because we’re doing all the work.
So if every doctor that works in this type of work is someone who actually has the condition that may all get it that’s been my wish for years and years and years because that’s the only way anything will change.
Because of doctors can’t entertain the nuance of these conditions and spend the time doing a cross-referencing of patterns by working outside of having the condition themselves then well it doesn’t work because they’re living their own experience of reality not their patience’s experience of truth.
I couldn't agree with you more.
Its lyme and co infections!!!