Mean age at diagnosis is more accurate! Mean age at onset is inaccurate. I now know that I have had Sjogren's (undiagnosed) for over 45 years and all my issues were attributed to fibromyalgia and/or IBS-D, both of which I was finally diagnosed with at 19. Like many women, my symptoms were ignored, not listened to, and all attributed to fibromyalgia or bring female or poor genetics. I have also realized, along with my Rheumatologist and my PCP, that my almost 87 year old mother has suffered from undiagnosed Sjogren's most of her life (no need to tell her now). All of her symptoms were attributed to being female, poor genetics, etc. It is time for doctors and those in the medical field to listen to women and their symptoms, rather than say "it is all in your head," or "you are just depressed," or "avoid stress," or "you have bad genes," or "it's because you are female." And, one suggestion, for the presenter...please repeat the question asked prior to answering!
I never get a positive SSA or ANA, but I have a low C4C.. I have Hashimoto's (Thyroid Peroxidase antibodies etc... ) MCAS, EDS, POTS and all of the symptoms- I grew up with chronic mouth ulcers, always have dry mouth and teeth issues, Chronic eye infections, blepharitis, eye pain, etc.. trouble swallowing. I am so frustrated, I am so done with all of this. I am currently waiting for my SSA and ANA test, AGAIN.. every five years a different doctor is ordering it because they all think I have it and then the results are negative. Thank GOD this time I had a low c4c maybe they'll finally take me seriously. I also had the butterfly rash but the dr said mine was irregular because my forehead was also red but I have MCAS so I always have a rash over my entire face. Wish me luck please.
I started low dose naltrexone 2 weeks ago and my dryness is already improving so much that I cried for three days-normally if I get upset I cannot cry. In the shower I use coconut oil to wash, except for using some white dove soap in some areas. I washed my eyes with baby shampoo but I also use eye scrubs and lip scrubs After a shower I use castor oil to lock it all in. But it hasn't resolved my fatigue. Although I am not a key and have not been on pain meds for 3 weeks now, after 23 years. I'm going to ask for plaquenil when I go back to add to the LDN. I am 60 years old and I've had it most of my life although only diagnosed a few years ago I've been treating symptoms for a long time.
@@Atheist-Pinar generally they’ll start you on .5mg, then 1mg, 2mg up to 4.5mg. A dr has to call it in to a Compounded Pharmacy. It’s not a script from the pharmacy.
I am on low dose Naltrexone for my Sjogren's and other autoimmune diseases, which is helping the symptoms immensely. But I just learned that when I had my right salivary gland with three nodes removed in 1978, erythema nodosum/Stevens Johnson's disease in 1984, and meningitis in 1988, that they were all due to Sjogren's! I have been medicating the symptoms for years but was only diagnosed a few months ago. Now I have learned that there are heart and lung problems with Sjogren's but no one has really talked about it. If anyone knows of a video that talks about the heart problems in-depth please let me know.
Naltrexone is for alcoholism. If they put that in your chart. They will label you a alcoholic. Doctors get lots of money prescribing drug/alcoholic medications. Especially now that the government has received so much money for drug and alcohol treatments.
I used to use Bioteen, but I found out I'm allergic to the mint flavoring--which is in almost all oral products. I even had to find an unflavored toothpaste.
I have dry eyes because of my Sjögren's syndrome and now they're very blurry. My moms been putting eye drops in my eyes twice a day and her daughter thinks I have pink eye because of how red they are. What should I do?
Go see your primary care doctor or the rheumatologist that diagnosed you with Sjögren’s because the doctor prescribed medication for you to take and also either prescribed eye drops for you or told your to get over the counter type along with mouthwash like ACT or Biotene. Pink eye (conjunctivitis) has symptoms like thick yellow crust that sticks your eyelids together when you open them after sleeping almost like they’re glued shut. From now on, wash your hands VERY thoroughly with hot water and soap after you use the bathroom because pink eye is the result of you getting fecal matter in your eye. What medications are you on for Sjögrens? Also I know your post was 4 months ago, but i hope I was able to help in some way!
I was given some eye drops and a prednisone eye drop as well...Punctal plugs are amazing as well...I have wanted to roll my eyes in a cup of water they were so gritty for so long. So much better
I had a female doctor treat me terribly over this illness. She wouldn't prescribe me Prendisone. But prescribed fungus cream. But the instructions said, do not put near your eyes. She told me to spread it on my eyelids. Dangerous advice. Then she gave me 30 days to find another doctor. My dentist wanted to give me xrays every time I came for a visit. I had to stop him. Too many xrays are Dangerous. I went in for a MRI a few years ago. For a adenoma. The tech asked me if I had alot of radiation. Because my MRI showed damage from radiation. No cancer. Just good, helpful professional doctors looking out for me. So much so, that they allow so many scans and xrays to fry my brain.
Does there have to be a positive ss-a/ss-b to be diagnosed? I have all the symptoms including dryness symptoms, I have positive anti ccp and rheumatoid factor
I read an article saying that you can have negative ss a/ ssb but have autonomic nervous system involvement. It can affect peristalsis in the oesophagus. You can have manometry of the oesophagus to measure this.
@@jilljones4566 well actually it seems as if I have Stiff Person Syndrome. My symptoms only got worse and then I started having total core and limb spasms. It’s been a fun past couple of years. I got to start Olumiant thought and it has helped with all my autoimmune issues.
I have ulcerative colitis and periferial neuropathy. I have extremely dry eyes and mout,skin etc.Other body parts are affected.The dr.ignored my symptomsbecause it didn'tshow up in my lab work up.What gives?.
I have Sjogren and rhumitoid arthritis and my rumatoligest gave me plaquinel and told me I have to see a eye doctor every 6 months if I take plaqwinel so I’m scared to take it I don’t want it to effect my eyes it the only part of my body that works good 👍
My eye doctor saw me once and gave me Systane drops. He doesn't feel that he can do anything else for me. He said I need a Rheumatologist. But I can't get in. Six month wait.
Xylimelts work amazing for me. Inexpensive available on Amazon. I totally recommend. Thank you for the recommendation on ACT ..I really don't like the Biotene.
TheraBreath Dentist Formulated DRY MOUTH LOZENGES with xylitol and made with stevia Rebaudiana leaf extract. I use Mandarin+Mint. Very nice flavor, I've used all the prescription for artificial saliva(they are awful). I also use this brand because it has no artificial sweeteners(which I'm severely allergic to) in it. I'm also a diabetic type 2 Whose allergic to all artificial sweeteners and have kept my A1c under 7 by listening to my doctors and dieticianist.. I have Sjogrens syndrome , schlerdoma, lupus, and arthritis. I have had a lip biopsy to test positive for Sjogrens syndrome done by my ENT,because I give off a lot of false negatives to blood work. I also lost a saliva gland from being infected with calcium stone, and infection so many times before I was ever diagnosed with Sjogrens(lost salvia gland and teeth, in 1990 and wasn't diagnosed until 1994). I've suffered since a very young child, it took over 25 years to diagnose me with Sjogrens syndrome, lupus schlerdoma and much more. When I was 17 I had an emergency exploratory surgery, and they found a lot of inflammation and other things wrong, they told my parents that something was really wrong with me but didn't know what. That's when I started using university hospitals like Stanford, Iowa State, Ohio State, and now Baylor College of Medicine in Houston Texas. They are on top of the latest things in medicine. I've done several studies for Sjogrens syndrome, and I'm doing one now for the heart call a CARDIO MEMS DEVICE. , It's to help diagnose a possible heart attack 2 weeks before ithappens. I Lay on a special machine every day and it takes a reading of the pressure of the lungs and heart and sends it to my doctor everyday, along with Abbott, Then I get a call from the heart Dr telling me what meds to adjust. If what I'm doing with these studies will help them learn more and help someone in the future, then I've done the right thing. So please listen to your Drs, and never stop looking for the right medical answer, and talk to your doctor's. So always listen to your own body, because we're all different.
Please update content. Sjogren's is now called Sjogren's Disease instead of Syndrome. Primary and secondary is no longer designated. There is often overlap with other autoimmune diseases. Refer to the Sjogren's Foundation: www.sjogrens.org.
Mean age at diagnosis is more accurate! Mean age at onset is inaccurate. I now know that I have had Sjogren's (undiagnosed) for over 45 years and all my issues were attributed to fibromyalgia and/or IBS-D, both of which I was finally diagnosed with at 19. Like many women, my symptoms were ignored, not listened to, and all attributed to fibromyalgia or bring female or poor genetics.
I have also realized, along with my Rheumatologist and my PCP, that my almost 87 year old mother has suffered from undiagnosed Sjogren's most of her life (no need to tell her now). All of her symptoms were attributed to being female, poor genetics, etc.
It is time for doctors and those in the medical field to listen to women and their symptoms, rather than say "it is all in your head," or "you are just depressed," or "avoid stress," or "you have bad genes," or "it's because you are female."
And, one suggestion, for the presenter...please repeat the question asked prior to answering!
The gaslighting is REAL! 😡
It's time to get rid of the current medical system. Why people still trust doctors bought by big Pharma is beyond me.
I never get a positive SSA or ANA, but I have a low C4C.. I have Hashimoto's (Thyroid Peroxidase antibodies etc... ) MCAS, EDS, POTS and all of the symptoms- I grew up with chronic mouth ulcers, always have dry mouth and teeth issues, Chronic eye infections, blepharitis, eye pain, etc.. trouble swallowing. I am so frustrated, I am so done with all of this. I am currently waiting for my SSA and ANA test, AGAIN.. every five years a different doctor is ordering it because they all think I have it and then the results are negative. Thank GOD this time I had a low c4c maybe they'll finally take me seriously. I also had the butterfly rash but the dr said mine was irregular because my forehead was also red but I have MCAS so I always have a rash over my entire face. Wish me luck please.
Thank you! Very informative and useful presentation for self management of Sjogren's symptoms.
I started low dose naltrexone 2 weeks ago and my dryness is already improving so much that I cried for three days-normally if I get upset I cannot cry. In the shower I use coconut oil to wash, except for using some white dove soap in some areas. I washed my eyes with baby shampoo but I also use eye scrubs and lip scrubs After a shower I use castor oil to lock it all in. But it hasn't resolved my fatigue. Although I am not a key and have not been on pain meds for 3 weeks now, after 23 years. I'm going to ask for plaquenil when I go back to add to the LDN. I am 60 years old and I've had it most of my life although only diagnosed a few years ago I've been treating symptoms for a long time.
Hi . How do you use Naltrexone as how much mg ? is it a drop shape? I hope you can answer. Thank you Greetings from the Netherlands
@@Atheist-Pinar generally they’ll start you on .5mg, then 1mg, 2mg up to 4.5mg. A dr has to call it in to a Compounded Pharmacy. It’s not a script from the pharmacy.
Placqunel didn't work for me.
I've had two cancers one in 2013 and the other in 2018 of Lymphona to my salivary gland on both sides of my paratid gland. Just wonderful. I hate it.
I am on low dose Naltrexone for my Sjogren's and other autoimmune diseases, which is helping the symptoms immensely.
But I just learned that when I had my right salivary gland with three nodes removed in 1978, erythema nodosum/Stevens Johnson's disease in 1984, and meningitis in 1988, that they were all due to Sjogren's! I have been medicating the symptoms for years but was only diagnosed a few months ago. Now I have learned that there are heart and lung problems with Sjogren's but no one has really talked about it.
If anyone knows of a video that talks about the heart problems in-depth please let me know.
Natrexone...help u with saliva glands??
Naltrexone is for alcoholism. If they put that in your chart. They will label you a alcoholic. Doctors get lots of money prescribing drug/alcoholic medications. Especially now that the government has received so much money for drug and alcohol treatments.
Informative video for those just diagnosed....me!!! Thank you
Thank you for all the Great information‼️😍
This was a very good informative video...
thank you thank you thank you !!!!!
Thank you heather,lovely video,a very well thought primer,me a family physician learned,more for patient and public education,thank you,and keep it up
I used to use Bioteen, but I found out I'm allergic to the mint flavoring--which is in almost all oral products. I even had to find an unflavored toothpaste.
I have dry eyes because of my Sjögren's syndrome and now they're very blurry. My moms been putting eye drops in my eyes twice a day and her daughter thinks I have pink eye because of how red they are. What should I do?
Go see your primary care doctor or the rheumatologist that diagnosed you with Sjögren’s because the doctor prescribed medication for you to take and also either prescribed eye drops for you or told your to get over the counter type along with mouthwash like ACT or Biotene. Pink eye (conjunctivitis) has symptoms like thick yellow crust that sticks your eyelids together when you open them after sleeping almost like they’re glued shut. From now on, wash your hands VERY thoroughly with hot water and soap after you use the bathroom because pink eye is the result of you getting fecal matter in your eye. What medications are you on for Sjögrens? Also I know your post was 4 months ago, but i hope I was able to help in some way!
I got embarrassed around my friends having sjorens but I came across an herbal doctor on TH-cam dr udoka who healed me totally.
I was given some eye drops and a prednisone eye drop as well...Punctal plugs are amazing as well...I have wanted to roll my eyes in a cup of water they were so gritty for so long. So much better
I had a female doctor treat me terribly over this illness. She wouldn't prescribe me Prendisone. But prescribed fungus cream. But the instructions said, do not put near your eyes. She told me to spread it on my eyelids. Dangerous advice. Then she gave me 30 days to find another doctor. My dentist wanted to give me xrays every time I came for a visit. I had to stop him. Too many xrays are Dangerous. I went in for a MRI a few years ago. For a adenoma. The tech asked me if I had alot of radiation. Because my MRI showed damage from radiation. No cancer. Just good, helpful professional doctors looking out for me. So much so, that they allow so many scans and xrays to fry my brain.
Time for functional medicine.
Does there have to be a positive ss-a/ss-b to be diagnosed? I have all the symptoms including dryness symptoms, I have positive anti ccp and rheumatoid factor
I got embarrassed around my friends having sjorens but I came across an herbal doctor on TH-cam dr udoka who healed me totally.
@seaglassmomma I’ve heard some patients are negative by blood, but positive lip biopsy or Schirmer’s tear eye test.
I read an article saying that you can have negative ss a/ ssb but have autonomic nervous system involvement. It can affect peristalsis in the oesophagus. You can have manometry of the oesophagus to measure this.
@@jilljones4566 well actually it seems as if I have Stiff Person Syndrome. My symptoms only got worse and then I started having total core and limb spasms. It’s been a fun past couple of years. I got to start Olumiant thought and it has helped with all my autoimmune issues.
Can I take estradiol or does that make it worse?
Made it worse for me. Women need testosterone. But good luck getting a doctor to prescribe it.
Does anyone have non stop sticky fluid from top eye lid?
I have ulcerative colitis and periferial neuropathy. I have extremely dry eyes and mout,skin etc.Other body parts are affected.The dr.ignored my symptomsbecause it didn'tshow up in my lab work up.What gives?.
No choice about taking Zyrtec. Being alive makes me itch and congested/watery eyes, nasal drip. Unavoidable.
I have Sjogren and rhumitoid arthritis and my rumatoligest gave me plaquinel and told me I have to see a eye doctor every 6 months if I take plaqwinel so I’m scared to take it I don’t want it to effect my eyes it the only part of my body that works good 👍
My eye doctor saw me once and gave me Systane drops. He doesn't feel that he can do anything else for me. He said I need a Rheumatologist. But I can't get in. Six month wait.
Xylimelts work amazing for me. Inexpensive available on Amazon. I totally recommend. Thank you for the recommendation on ACT ..I really don't like the Biotene.
Cant use Biotene also,its terrible
Hai .what is ACT ?
@@Atheist-Pinar it’s a mouthwash for dry mouth
TheraBreath Dentist Formulated DRY MOUTH LOZENGES with xylitol and made with stevia Rebaudiana leaf extract. I use Mandarin+Mint. Very nice flavor, I've used all the prescription for artificial saliva(they are awful). I also use this brand because it has no artificial sweeteners(which I'm severely allergic to) in it. I'm also a diabetic type 2 Whose allergic to all artificial sweeteners and have kept my A1c under 7 by listening to my doctors and dieticianist.. I have Sjogrens syndrome , schlerdoma, lupus, and arthritis. I have had a lip biopsy to test positive for Sjogrens syndrome done by my ENT,because I give off a lot of false negatives to blood work. I also lost a saliva gland from being infected with calcium stone, and infection so many times before I was ever diagnosed with Sjogrens(lost salvia gland and teeth, in 1990 and wasn't diagnosed until 1994). I've suffered since a very young child, it took over 25 years to diagnose me with Sjogrens syndrome, lupus schlerdoma and much more. When I was 17 I had an emergency exploratory surgery, and they found a lot of inflammation and other things wrong, they told my parents that something was really wrong with me but didn't know what. That's when I started using university hospitals like Stanford, Iowa State, Ohio State, and now Baylor College of Medicine in Houston Texas. They are on top of the latest things in medicine. I've done several studies for Sjogrens syndrome, and I'm doing one now for the heart call a CARDIO MEMS DEVICE. , It's to help diagnose a possible heart attack 2 weeks before ithappens. I Lay on a special machine every day and it takes a reading of the pressure of the lungs and heart and sends it to my doctor everyday, along with Abbott, Then I get a call from the heart Dr telling me what meds to adjust. If what I'm doing with these studies will help them learn more and help someone in the future, then I've done the right thing. So please listen to your Drs, and never stop looking for the right medical answer, and talk to your doctor's. So always listen to your own body, because we're all different.
I use CBD for the musculoskeletal pain. It works day and night.
Sjogren’s Syndrome management is simpler with Planet Ayurveda's holistic treatments. They're simply the best.
So maybe it wasn’t my imagination that this has mostly been a problem since I started my job in 2022 and then got covid three months later.
What about covid? My eyes have been swollen and red since I had covid. The ophthalmologist and allergist keep telling me its an allergy.
Is Sjogren Syndrome hereditary?
U are an angel .... J thought I was on there you might be my twin .. lmao .... Thanks
everything of serious important is skimmed over at the last of this God for saken boring, common sense video
Please update content. Sjogren's is now called Sjogren's Disease instead of Syndrome. Primary and secondary is no longer designated. There is often overlap with other autoimmune diseases. Refer to the Sjogren's Foundation: www.sjogrens.org.
Sjogren is pronounced Shergrens
lame