I have this. They need to get on it much more as diagnosis and treatment everywhere is pitiful . We deserve better so we can maximise our functionality. The most heartbreaking thing is not being able to participate in life as we once could. It’s basically torture.
I am in the process of being diagnosed. My dentist ophthalmologist and family doctors have all suspected this is my underlying problem. My first thought was Cool. I have a disease with an umlaut! Then realized that it won’t kill me but will make me feel like I am dying every day until something else does! Sad.
Good presentation. There's just one thing that I would disagree with; Fluoride rinse. Some studies show that fluoride actually causes dental caries and it also makes bones weaker.
My sister was diagnosed with this last year. But she has never had a problem with dry eyes or mouth though. However, she must have had an autoimmune disease since she was born. She had a liver operation at 18 months old, doctors did not know what caused her liver enlargement, they misdiagnosed her with cirrhosis and told my parents to start preparing for her funeral. Then one of the doctors prescribed Prednisone which eventually stabilized her condition. She was fine most of her adult life apart from occasional flair ups and unexplained dry cough.. She is now 45 years old and the symptoms hit her hard in a form of stomach and intestine inflammation. She can hardly eat anything without painful gut reaction. That is how she finally got tested and diagnosed. Everything from the past now fits like a puzzle, including our mother's kidney failure and dry eyes...
Wow, what insight! I’m just an ordinary 69 year old woman. Years ago, I was referred to an Endocrinologist for initial evaluation of Sjogren’s Syndrome. At least 25 years ago. Skip a non diagnosed life, in 2013 I was diagnosed with Lymphoma! Thank God, I’m 8 years well, but after listening intently to your presentation, I surely wonder if I have been living with SS all along! My eyes, mouth and vagina are and have been so dry I can hardly see at times, swallow at night and after 50 years of marriage, I don’t have to tell you the rest!!! Going to discuss this with my doctor of 35 years! Thank you so much!
I have this illness and I had extreme pain in my throat and neck. I had a cat scan and they going out I had something called saliva stones. I’ve not heard of this but wonder if it could turn into lymphoma! I’m in pain so much
I am 70 next birthday, was diagnosed with Hashimoto illness after birth of my fourth child, most of these autoimmune illnesses are related to the gut bacteria being insufficient or damaged, cure your gut and your health improves dramatically, I now take Omega 3 , the most important supplement EVERY day, plus a daily probiotic, also before every meal I take an apple cider vinegar tablet to aid proper digestion of nutrients, so Vit B group are super important, I also take krill oil and black seed oil daily, vit D and evening primrose oil. I am now pain free , I still have to lubricate my eyes with preservative free eye drops nd still some dry mouth when I wake up but my joints are pain free , also vip to eat good quality olive oil daily, extremely I use hyaluronic acid on my skin, I swim in the sea and the salt is very dehydrating, as you can see top quality oils are very healing for these type of diseases, BUT the most important is Omega 3
I have sjogren's it is awful. Çhapped lips, hard and cracked, mouth. is Soo dry !!! Ño saliva !! Just about No voice !! Can hardly talk !! The corners of my mouth are sore, also the corners of my eyes are starting to be a little sore as well. I talk through a little amplifier , it truly is torture !!
CORRECT!! Its not just dry eyes and dry mouth and I wish that, that explanation of it would not be the primary explanation of it because once people hear or see it, they become very dismissive of it and don't think its that serious. Its so much more than that and the most worst of symptoms keep me bed bound and feeling sick on a daily basis. But most don't seem to care or believe me if they first see it defined as a autoimmune disease that causes dry eyes and dry mouth.
I'm in CA, a retired RN. I share your frustration w/ most Drs/clinics not being able to correctly dx Sjorgens, after yrs of symptoms. A rheumatologist out of state finally dx me. I won't take prescription meds as fillers are toxins (you can google ingredients). FDA allows them anyway. What I have found very helpful is: rinse mouth at bedtime & if you get up during the night w/ organic sesame oil for the dryness, anu tailani nose drops (ayurvedic), fresh coconut milk drops in eyes followed by hot wet compress & lying down for 20min (use fresh white coconut, put some liquid into clean eye dropper bottle, refrigerate, discard after 2 wks: Hanna Kroeger's cataract remedy), a Rife frequency for autoimmune disease, eyes, etc, and prayer.
I have significant dry eyes x 10 years and dry mouth x 1 year, peripheral neuropathy. I went to a rheumatologist who asked me what difference does it make if the treatment is not going to change? I requested the SSA and SSB which were negative. Lip bx is planned for this Friday. The ENT asked me the same thing. I don't understand what is wrong with these doctors? Aren't they supposed to diagnose? Anyway, my daughter passed at 35 after having SLE since whe was 14. Am I wrong to expect the doctors to help me?
Hell no your not I want a diagnosed this so I can watch four different things try maybe natural things I still want the hell to know we have a right to know what is wrong with us they should want to find out the diagnosis
He’s my rheumatologist, but doesn’t treat fibromyalgia. I went back to him later after I contracted Sjogren’s, and had a bad experience with his PA. I sent them a letter and they asked that I come back, but I sure didn’t want to see her!
I think this is probably the worst autoimmune anyone can have! I had to retire from my teaching career because of this! I also had 3 major surgeries because of organ failure, in a short time. It’s SO painful to the eyes!
I thought many people with Sjogren's have problems with their esophagus and acid reflux - but I don't recall seeing this mentioned in the presentation (maybe I fell asleep as I watched it late last night).
I don't have the SSA and SSB but a high ANA. It took yrs and going to numerous of rheumatologists to find a dr to say you have sjogren's i know you do, let me try another test. She did the early sjogren's panel test and it lit up. She said i knew you had it and she also explained that there's a percentage of people who do not get a positive SSA and SSB test. Now finding the right medicine for me is another challenge because im often sensitive to medicine.
I'm being tested for this right now. So glad to find out why I've been dying since my 20s . I'll be fifty next month and all docs say is lose weight or to exercise and even told me I have asthma
Omg! I was actually diagnosed by an ophthalmologist. I had ulcerated eyes, organ failures, and it was horrible when I had breast implants. When they were removed, I got way better, except for some flares and severe, chronic back pain. I think I may have to go see him to see if I have Ankylosing spondylitis.
@@Tinyteacher1111 Interesting, I know some one who was diagnosed with Lupus, then had her breast implants taken out and she improved out of sight. Unfortunately I don't know if it was a complete cure though. She was on RUclips. Don't know if she still is.
I was dx as I was walking out of my rheumatologist exam room where I had just been dx with RA when I asked about the Purpuric lesions on my legs which bleed like crazy when I shaved my legs. He got all excited and called in his PA and used it as a teaching opportunity. But for me, he wrote down a website on a post it and that was it. Needless to say I didn’t got back, the. Next dr I saw closed his practice during Covid and never reopened so I’m now without a rheumatologist. Thank you for you help
I just happened to see this scrolling through my feed. I have Sjogren's secondary to Ankylosing Spondylitis, it causes me allot of issues and certainly takes up more time treating it and preventing complications than my AS does. Zylitol and something called Noz Oil are my best friends. I also take cold drinking water with me where ever I go.
I was just diagnosed with Hashimoto’s The endocrinologist is sending me to a rheumatologist for SS. I have had severe scoliosis since adolescence. 4 years ago i had a T4 to pelvic spinal reconstruction. I wish you all the best!
I would like to share my Sjogren's history in hopes it might help someone. I started having major dental issues like cracked teeth or losing my fillings. It then turned into painful joints esp in the feet. Sjogren's never showed up in my blood work. I had a lip biopsy and it showed a high prevalence rate to this day my rheumatoid arthritis or Sjogren's never shows. Fatigue and pain is the hardest. I take Plaquenil and Rituxan I would be crippled and in a wheelchair or my bed without these meds
I am currently waiting to get tested for Pots and SS. I'm 37 years old and I have passed out without remembering, I have extreme fatigue where I can sleep for 16 hours straight. I get extreme dry mouth, feel like I have drank water in years and extreme, extreme body pain.
you may want to be tested for neurological sleep disorder/s. Done after a sleep apnea test. See a sleep neurologist, lupus can cause narcolepsy. My daughter started out with anemia, then narcolepsy, now connective tissue issues that point to lupus. The neurologist said lupus can cause narcolepsy. I have sjorgrens, just diagnosed because she told her rhuematologist about my symptoms.. I also have idiopathic hypersomnia ( tired always, no matter how much sleep I get)
I had positive ra test and Ana tests offered methotrexate and plaqunil which I refused for I disagreed with diagnosis of RA. My husband stricken with RA at age 33 and I am not like his symptoms. I am 72. More muscle pain shoulder and lower back pain I take multiple supplements otc. I have dry eyes and mouth . I want to treat this but not with chemicals if possible my dentist says I have stones in both of salivary glands but I don’t have a doctor to turn to.
Great overview and questions answered. The one thing I’d liked to hear more on is the destruction of the salivary glands and the onset of over production of salivary. Inside air conditioning dry but in normal and heat conditions over production and extensive neuropathy very painful. How does one stop the excessive saliva, what medications are available? I’m finding doctors I’ve been to here in Australia seem so uninformed on this condition. Currently seeing a Rheumatologist but have more questions than answers.
The very first time I was diagnosed with SS the test included lupus. If you have Sjogren's should you be tested for lupus over a few years of having SS
True there are a lot of people who have both Lupus and Sjögren’s Syndrome together. It took over a year to get a definite confirmation of Sjögren’s for me, because in the beginning my doctors weren't sure if I had Lupus or Sjogren's but it was determined I have primary Sjögren’s Syndrome because I don't have the positive Smith antibody which is a definite marker of Lupus. Although I still think I may have Secondary Sjogren's instead of Primary because I think I may also have rheumatoid arthritis too, but I have to wait until my Rhumatologist confirms it too. She diagnosed me with inflammatory arthritis several months ago, but according to my own research there are more than one type of inflammatory arthritis and one of them is Rhumatoid but until my doctor confirms it to me I'm unsure.
I live in Arkansas. Been trying to get in a rheumatologist for 20 years. They tell doctor to run a blood test ant say that one is what I have. Multiple symptoms and extreme pain anxiety. I am 70. I believe pcp gave up. Everything is caused by age. !!
Great. comprehensive video...perhaps the opening can be re-recorded to correct errors, especially the attempt to pronounce Sjogren's. (Although it did make me smile).
Can you get the face rash and hair loss with sjogrens? I have the dryness problems like sjogrens but also the rash and hair loss. I also have constant female and scalp itching that no treatment seems to resolve.
Going down the rabbit hole of being diagnosed with Sjogren's now. I've lived with Hashimoto's for 30+ years, fibro, etc.... also carry the Epstein-Barr virus... was very very sick for months with it in high school. My eyes feel like they're full of grit, my teeth break off and chip, get infected and have to be removed, the list is never ending. My wrists are swollen and throbbing, screaming at me with pain. The wrist bones are painful when I touch them, but it seems to be seriously muscular in nature as well. I want to try the HCQ-Plaquenil to see if it reduces the inflammation. If not, since it's been 2 months of pain and immobility, I'm going to try steroid shots in them. NO pills, though. Thank-you Dr. Santos, for such a thorough and complete presentation on this quality of life stealing disease. I know I will be returning to listen to this again and again. It's full of so many helpful nuggets.
I'm so sorry you're going through this too. I wouldn't wish Sjögren’s on my worst enemy, it's a horrible disease to have. I have been on Hydroxychloroquine for over a year and still haven't noticed a change or improvement with my symptoms, however when I was temporarily on a steroid methyalprednisone for a few months I felt almost back to my old self. I had my energy back, I wasn't nearly as fatigued. It felt as though I had drank one of those energy drinks, I felt great. I've been trying to get back on it permanently but I don't know If my doctor will let me.
@@PrettyEyesz Well, my doc started me on HCQ 3 months ago, switched me up to methotrexate by weekly injection, and 10 mg prednisone. Sitting here watching my knuckles and wrist bones grow and begin to get deformed. What a nightmare. I pray you get improvment!!
I have severe disabling neurological symptoms - and Sjogren's Disease - and I'm a man.... so it definitely 'can' happen. I can't find a rheumatologist that is knowledgeable on Sjogrens in the area I live in Louisville Kentucky. Not regarding the extraglandular manifestations....
Im so confused!! Dr. says he specifically didn’t focus on diet here…however DIET plays a specific roll with this disease. Simple sugar ..yes ..this I understand completely but red meat ? Are we talking about “raw red bloody meat” ?? So confused!! I’m suffering and don’t have a definitive diagnosis yet. I’ve gone down numerous rabbit holes and I’m just trying to feel better! Please help🙏🏼🙏🏼🙏🏼🙏🏼
Yes, an anti-imflammatory diet helps tremendously for me. I consume grass fed and finished beef only. The diet helps me to feel much better. Especially, it lessens my bone crushing chronic fatigue. Hope this helps.
Sjogrens can lead to dysautonomia and mast cell activation this is my issue with joint pain, dry eys, dry everything but the worst is small nerve fibre . Leads to constant pins and needles, burning and is terrible. Also tendon issues , digestive issues, heart rate changes, fatigue, Pots, fainting Most medics do not understand the breadth or scope of it I've had to sort out my own autonomic tests and about to have a small nerve fibre biopsy .. a long road Inflammation for me is above normal but not SO high as RA My focus is using supplements such as bs, vit d k2, omega 3 and dmards
I persuaded my doctor to president cbd oil and git fairly immediate relief from pins and needles,nerve pain and remission from lower leg numbness and peripheral neuropathy.
can someone have ms and sjorens. i was dx with ms in 2022. now my skin feels like is on fire and between my neuro and rheumatologist is at odds between one or the other or both. im a stress bucket and stress aint good for anyone one of those diseases. so can someone have both or one?I am so confused
There is no cure for this crap. I am a nurse with Sjogrens, Hashimotoes, Fibromyalgia, and I recently have become so sick I cannot work at all. Just on Hydroxychloriquine and meds to help with symptoms of fibromyalgia and thyroid meds and antidepressants. I am miserable and my life has been ruined.
@@lesleysears9808 sorry you’re suffering too :( I wish they would cure this shit I can’t stand being dry and exhausted with rashes and more God bless 🙏🏻
Hello again. Not that a firm diagnosis would change the outcome of your illness, but have you had an ANA, SSA, and SSB antibodies test? Also maybe check for thyroid antibodies if your thyroid is low…..from nurse Lesley
@@lesleysears9808 thanks nurse Lesley I have :( This all started after accutane… My ana is always speckled but low titer 1:160 last time o did it Saa ssb negative Igg4 elevated though Eye test shows no tears at all Lip biopsy negative Had another it shows mild inflammation Thyroid ultrasound in 2013 showed thyroiditis and levohtyroxine caused me to lose too much weight and then they said thyroid was fine Hate it :(
@@talksick508 They probably had the dose of thyroid too high back then. With Hashimotoes spelling? The thyroid production is too high for a while early on in the disease and then the antibodies eventually destroy thyroid tissue. I lost weight for a while and in time the thyroid gland was basically destroyed. I am on a high dose 150 mcg. of Synthroid now. If your thyroid has not been checked since 2013 you may be low now. Have the Doctor do a free T3 and T4 and don’t let him just rely on the TSH because it is a worthless guide.
I have Sjogens Syndrome and Neurological disease. I have a lot of pain, dryness and was recently told I have an abnormal liver test. What should I do now?
@@kimskorner oh, I’m so sorry! The implants don’t cause breast cancer, they cause lymphoma. I’m sorry for the scare and grief you must have gone through.
![Stromae, Pomme - “Ma Meilleure Ennemie” (from Arcane Season 2) [Official Visualizer]](http://i.ytimg.com/vi/1F3OGIFnW1k/mqdefault.jpg)
I have this. They need to get on it much more as diagnosis and treatment everywhere is pitiful . We deserve better so we can maximise our functionality. The most heartbreaking thing is not being able to participate in life as we once could. It’s basically torture.
I am in the process of being diagnosed. My dentist ophthalmologist and family doctors have all suspected this is my underlying problem.
My first thought was
Cool. I have a disease with an umlaut!
Then realized that it won’t kill me but will make me feel like I am dying every day until something else does! Sad.
Good presentation. There's just one thing that I would disagree with; Fluoride rinse. Some studies show that fluoride actually causes dental caries and it also makes bones weaker.
Gives me and my kids nausea & migraines, so we refuse it.
My sister was diagnosed with this last year. But she has never had a problem with dry eyes or mouth though. However, she must have had an autoimmune disease since she was born. She had a liver operation at 18 months old, doctors did not know what caused her liver enlargement, they misdiagnosed her with cirrhosis and told my parents to start preparing for her funeral. Then one of the doctors prescribed Prednisone which eventually stabilized her condition. She was fine most of her adult life apart from occasional flair ups and unexplained dry cough.. She is now 45 years old and the symptoms hit her hard in a form of stomach and intestine inflammation. She can hardly eat anything without painful gut reaction. That is how she finally got tested and diagnosed. Everything from the past now fits like a puzzle, including our mother's kidney failure and dry eyes...
Wow, what insight! I’m just an ordinary 69 year old woman. Years ago, I was referred to an Endocrinologist for initial evaluation of Sjogren’s Syndrome. At least 25 years ago. Skip a non diagnosed life, in 2013 I was diagnosed with Lymphoma! Thank God, I’m 8 years well, but after listening intently to your presentation, I surely wonder if I have been living with SS all along! My eyes, mouth and vagina are and have been so dry I can hardly see at times, swallow at night and after 50 years of marriage, I don’t have to tell you the rest!!! Going to discuss this with my doctor of 35 years! Thank you so much!
I have this illness and I had extreme pain in my throat and neck. I had a cat scan and they going out I had something called saliva stones. I’ve not heard of this but wonder if it could turn into lymphoma! I’m in pain so much
I am 70 next birthday, was diagnosed with Hashimoto illness after birth of my fourth child, most of these autoimmune illnesses are related to the gut bacteria being insufficient or damaged, cure your gut and your health improves dramatically, I now take Omega 3 , the most important supplement EVERY day, plus a daily probiotic, also before every meal I take an apple cider vinegar tablet to aid proper digestion of nutrients, so Vit B group are super important, I also take krill oil and black seed oil daily, vit D and evening primrose oil. I am now pain free , I still have to lubricate my eyes with preservative free eye drops nd still some dry mouth when I wake up but my joints are pain free , also vip to eat good quality olive oil daily, extremely I use hyaluronic acid on my skin, I swim in the sea and the salt is very dehydrating, as you can see top quality oils are very healing for these type of diseases, BUT the most important is Omega 3
J@@mariangrimsdell1112
This is the best presentation I’ve heard on Sjörgens yet. Thanks doc! I’m sure your patients appreciate you immensely.
second that i have lupus with this i had a cleft
I have sjogren's it is awful. Çhapped lips, hard and cracked, mouth. is Soo dry !!! Ño saliva !! Just about No voice !! Can hardly talk !! The corners of my mouth are sore, also the corners of my eyes are starting to be a little sore as well. I talk through a little amplifier , it truly is torture !!
CORRECT!! Its not just dry eyes and dry mouth and I wish that, that explanation of it would not be the primary explanation of it because once people hear or see it, they become very dismissive of it and don't think its that serious. Its so much more than that and the most worst of symptoms keep me bed bound and feeling sick on a daily basis. But most don't seem to care or believe me if they first see it defined as a autoimmune disease that causes dry eyes and dry mouth.
I'm in CA, a retired RN. I share your frustration w/ most Drs/clinics not being able to correctly dx Sjorgens, after yrs of symptoms. A rheumatologist out of state finally dx me. I won't take prescription meds as fillers are toxins (you can google ingredients). FDA allows them anyway. What I have found very helpful is: rinse mouth at bedtime & if you get up during the night w/ organic sesame oil for the dryness, anu tailani nose drops (ayurvedic), fresh coconut milk drops in eyes followed by hot wet compress & lying down for 20min (use fresh white coconut, put some liquid into clean eye dropper bottle, refrigerate, discard after 2 wks: Hanna Kroeger's cataract remedy), a Rife frequency for autoimmune disease, eyes, etc, and prayer.
I have significant dry eyes x 10 years and dry mouth x 1 year, peripheral neuropathy. I went to a rheumatologist who asked me what difference does it make if the treatment is not going to change? I requested the SSA and SSB which were negative. Lip bx is planned for this Friday. The ENT asked me the same thing. I don't understand what is wrong with these doctors? Aren't they supposed to diagnose? Anyway, my daughter passed at 35 after having SLE since whe was 14. Am I wrong to expect the doctors to help me?
Hell no your not I want a diagnosed this so I can watch four different things try maybe natural things I still want the hell to know we have a right to know what is wrong with us they should want to find out the diagnosis
He’s my rheumatologist, but doesn’t treat fibromyalgia. I went back to him later after I contracted Sjogren’s, and had a bad experience with his PA. I sent them a letter and they asked that I come back, but I sure didn’t want to see her!
I think this is probably the worst autoimmune anyone can have! I had to retire from my teaching career because of this! I also had 3 major surgeries because of organ failure, in a short time. It’s SO painful to the eyes!
Your manner of communication is excellent and allows for understanding. Awesome!
The best I’ve seen in Sjogrens. Thank you
I thought many people with Sjogren's have problems with their esophagus and acid reflux - but I don't recall seeing this mentioned in the presentation (maybe I fell asleep as I watched it late last night).
This is the best presentation I have seen on this. Thank you
I don't have the SSA and SSB but a high ANA. It took yrs and going to numerous of rheumatologists to find a dr to say you have sjogren's i know you do, let me try another test. She did the early sjogren's panel test and it lit up. She said i knew you had it and she also explained that there's a percentage of people who do not get a positive SSA and SSB test. Now finding the right medicine for me is another challenge because im often sensitive to medicine.
I'm being tested for this right now. So glad to find out why I've been dying since my 20s . I'll be fifty next month and all docs say is lose weight or to exercise and even told me I have asthma
Omg! I was actually diagnosed by an ophthalmologist. I had ulcerated eyes, organ failures, and it was horrible when I had breast implants. When they were removed, I got way better, except for some flares and severe, chronic back pain. I think I may have to go see him to see if I have Ankylosing spondylitis.
@@Tinyteacher1111 Interesting, I know some one who was diagnosed with Lupus, then had her breast implants taken out and she improved out of sight. Unfortunately I don't know if it was a complete cure though. She was on RUclips. Don't know if she still is.
Ditto!!
What testing?
Hola, God bless all hang in their thank u for your lightment of this diease ❤️🌈❤️
Excellent, many many thanks
I was dx as I was walking out of my rheumatologist exam room where I had just been dx with RA when I asked about the Purpuric lesions on my legs which bleed like crazy when I shaved my legs. He got all excited and called in his PA and used it as a teaching opportunity. But for me, he wrote down a website on a post it and that was it. Needless to say I didn’t got back, the. Next dr I saw closed his practice during Covid and never reopened so I’m now without a rheumatologist. Thank you for you help
Not only an insightful presentation but each answer to the audience questions was extremely informative. Thank you! Xxx
Thank you
Very good lecture.Very good.Well presented
I just happened to see this scrolling through my feed. I have Sjogren's secondary to Ankylosing Spondylitis, it causes me allot of issues and certainly takes up more time treating it and preventing complications than my AS does. Zylitol and something called Noz Oil are my best friends. I also take cold drinking water with me where ever I go.
I was just diagnosed with Hashimoto’s The endocrinologist is sending me to a rheumatologist for SS. I have had severe scoliosis since adolescence. 4 years ago i had a T4 to pelvic spinal reconstruction. I wish you all the best!
I would like to share my Sjogren's history in hopes it might help someone. I started having major dental issues like cracked teeth or losing my fillings. It then turned into painful joints esp in the feet. Sjogren's never showed up in my blood work. I had a lip biopsy and it showed a high prevalence rate
to this day my rheumatoid arthritis or Sjogren's never shows. Fatigue and pain is the hardest. I take Plaquenil and Rituxan
I would be crippled and in a wheelchair or my bed without these meds
Be very careful with your eyes using Plaquenil. Go to your eye dr. regularly. I lost some sight in one eye and had to discontinue that drug.
@@carolenault9147 thank you for your thoughtfulness I do see my eye Dr every 6 months and so far so good 😊
I am currently waiting to get tested for Pots and SS. I'm 37 years old and I have passed out without remembering, I have extreme fatigue where I can sleep for 16 hours straight. I get extreme dry mouth, feel like I have drank water in years and extreme, extreme body pain.
you may want to be tested for neurological sleep disorder/s. Done after a sleep apnea test. See a sleep neurologist, lupus can cause narcolepsy. My daughter started out with anemia, then narcolepsy, now connective tissue issues that point to lupus. The neurologist said lupus can cause narcolepsy. I have sjorgrens, just diagnosed because she told her rhuematologist about my symptoms.. I also have idiopathic hypersomnia ( tired always, no matter how much sleep I get)
Excellent! Thank you so much for this
I have lupus, with sjogrens this is some info I never knew.
I had positive ra test and Ana tests offered methotrexate and plaqunil which I refused for I disagreed with diagnosis of RA. My husband stricken with RA at age 33 and I am not like his symptoms. I am 72. More muscle pain shoulder and lower back pain I take multiple supplements otc. I have dry eyes and mouth . I want to treat this but not with chemicals if possible my dentist says I have stones in both of salivary glands but I don’t have a doctor to turn to.
Research carnivore diet.
Great overview and questions answered. The one thing I’d liked to hear more on is the destruction of the salivary glands and the onset of over production of salivary. Inside air conditioning dry but in normal and heat conditions over production and extensive neuropathy very painful. How does one stop the excessive saliva, what medications are available? I’m finding doctors I’ve been to here in Australia seem so uninformed on this condition. Currently seeing a Rheumatologist but have more questions than answers.
Jo-Aus I am about to start this journey too.. very scared
The very first time I was diagnosed with SS the test included lupus. If you have Sjogren's should you be tested for lupus over a few years of having SS
True there are a lot of people who have both Lupus and Sjögren’s Syndrome together. It took over a year to get a definite confirmation of Sjögren’s for me, because in the beginning my doctors weren't sure if I had Lupus or Sjogren's but it was determined I have primary Sjögren’s Syndrome because I don't have the positive Smith antibody which is a definite marker of Lupus.
Although I still think I may have Secondary Sjogren's instead of Primary because I think I may also have rheumatoid arthritis too, but I have to wait until my Rhumatologist confirms it too. She diagnosed me with inflammatory arthritis several months ago, but according to my own research there are more than one type of inflammatory arthritis and one of them is Rhumatoid but until my doctor confirms it to me I'm unsure.
A more recent video from a Sjogren's org said research shows that males that show as positive for Sjogren's have XXY genetics.
I live in Arkansas. Been trying to get in a rheumatologist for 20 years. They tell doctor to run a blood test ant say that one is what I have. Multiple symptoms and extreme pain anxiety. I am 70. I believe pcp gave up. Everything is caused by age. !!
Great. comprehensive video...perhaps the opening can be re-recorded to correct errors, especially the attempt to pronounce Sjogren's. (Although it did make me smile).
Can you get the face rash and hair loss with sjogrens? I have the dryness problems like sjogrens but also the rash and hair loss. I also have constant female and scalp itching that no treatment seems to resolve.
is the joint pain from Sjogren's also referred to as peripheral neuropathy?
Going down the rabbit hole of being diagnosed with Sjogren's now. I've lived with Hashimoto's for 30+ years, fibro, etc.... also carry the Epstein-Barr virus... was very very sick for months with it in high school. My eyes feel like they're full of grit, my teeth break off and chip, get infected and have to be removed, the list is never ending. My wrists are swollen and throbbing, screaming at me with pain. The wrist bones are painful when I touch them, but it seems to be seriously muscular in nature as well. I want to try the HCQ-Plaquenil to see if it reduces the inflammation. If not, since it's been 2 months of pain and immobility, I'm going to try steroid shots in them. NO pills, though. Thank-you Dr. Santos, for such a thorough and complete presentation on this quality of life stealing disease. I know I will be returning to listen to this again and again. It's full of so many helpful nuggets.
I'm so sorry you're going through this too. I wouldn't wish Sjögren’s on my worst enemy, it's a horrible disease to have. I have been on Hydroxychloroquine for over a year and still haven't noticed a change or improvement with my symptoms, however when I was temporarily on a steroid methyalprednisone for a few months I felt almost back to my old self. I had my energy back, I wasn't nearly as fatigued. It felt as though I had drank one of those energy drinks, I felt great. I've been trying to get back on it permanently but I don't know If my doctor will let me.
@@PrettyEyesz Well, my doc started me on HCQ 3 months ago, switched me up to methotrexate by weekly injection, and 10 mg prednisone. Sitting here watching my knuckles and wrist bones grow and begin to get deformed. What a nightmare. I pray you get improvment!!
@happy.homestead thank you. Best of good health to you and you're family.
I have severe disabling neurological symptoms - and Sjogren's Disease - and I'm a man.... so it definitely 'can' happen. I can't find a rheumatologist that is knowledgeable on Sjogrens in the area I live in Louisville Kentucky. Not regarding the extraglandular manifestations....
Im so confused!! Dr. says he specifically didn’t focus on diet here…however DIET plays a specific roll with this disease. Simple sugar ..yes ..this I understand completely but red meat ? Are we talking about “raw red bloody meat” ?? So confused!! I’m suffering and don’t have a definitive diagnosis yet. I’ve gone down numerous rabbit holes and I’m just trying to feel better! Please help🙏🏼🙏🏼🙏🏼🙏🏼
Yes, an anti-imflammatory diet helps tremendously for me. I consume grass fed and finished beef only. The diet helps me to feel much better. Especially, it lessens my bone crushing chronic fatigue. Hope this helps.
Can you take estradiol or does that make it worse?
Sjogrens can lead to dysautonomia and mast cell activation this is my issue with joint pain, dry eys, dry everything but the worst is small nerve fibre . Leads to constant pins and needles, burning and is terrible.
Also tendon issues , digestive issues, heart rate changes, fatigue, Pots, fainting
Most medics do not understand the breadth or scope of it
I've had to sort out my own autonomic tests and about to have a small nerve fibre biopsy .. a long road
Inflammation for me is above normal but not SO high as RA
My focus is using supplements such as bs, vit d k2, omega 3 and dmards
I persuaded my doctor to president cbd oil and git fairly immediate relief from pins and needles,nerve pain and remission from lower leg numbness and peripheral neuropathy.
can someone have ms and sjorens. i was dx with ms in 2022. now my skin feels like is on fire and between my neuro and rheumatologist is at odds between one or the other or both. im a stress bucket and stress aint good for anyone one of those diseases. so can someone have both or one?I am so confused
I’d do anything to get a diagnosis :(
14 years and I can’t get answers
Aging rapidly from this stuff
There is no cure for this crap. I am a nurse with Sjogrens, Hashimotoes, Fibromyalgia, and I recently have become so sick I cannot work at all. Just on Hydroxychloriquine and meds to help with symptoms of fibromyalgia and thyroid meds and antidepressants. I am miserable and my life has been ruined.
@@lesleysears9808 sorry you’re suffering too :(
I wish they would cure this shit
I can’t stand being dry and exhausted with rashes and more
God bless 🙏🏻
Hello again. Not that a firm diagnosis would change the outcome of your illness, but have you had an ANA, SSA, and SSB antibodies test? Also maybe check for thyroid antibodies if your thyroid is low…..from nurse Lesley
@@lesleysears9808 thanks nurse Lesley
I have :(
This all started after accutane…
My ana is always speckled but low titer 1:160 last time o did it
Saa ssb negative
Igg4 elevated though
Eye test shows no tears at all
Lip biopsy negative
Had another it shows mild inflammation
Thyroid ultrasound in 2013 showed thyroiditis and levohtyroxine caused me to lose too much weight and then they said thyroid was fine
Hate it :(
@@talksick508 They probably had the dose of thyroid too high back then. With Hashimotoes spelling? The thyroid production is too high for a while early on in the disease and then the antibodies eventually destroy thyroid tissue. I lost weight for a while and in time the thyroid gland was basically destroyed. I am on a high dose 150 mcg. of Synthroid now. If your thyroid has not been checked since 2013 you may be low now. Have the Doctor do a free T3 and T4 and don’t let him just rely on the TSH because it is a worthless guide.
I'M SEEING MY GASTRO DR SHOULD I HAVE HIM TEST ME TOO ?
I have Sjogens Syndrome and Neurological disease. I have a lot of pain, dryness and was recently told I have an abnormal liver test. What should I do now?
Do you have breast implants, by any chance? That’s what triggered mine.
@@Tinyteacher1111 No. I only had breast cancer twice.
@@kimskorner oh, I’m so sorry! The implants don’t cause breast cancer, they cause lymphoma. I’m sorry for the scare and grief you must have gone through.
@@Tinyteacher1111 It’s okay! God brought me through it. He’s the only reason I’m still here.
Michigan not Minnesota ❤
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