Sjogren's Syndrome | Eye Doctor Explains Sjogren's Disease and Sjögren's Syndrome Symptoms
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- Опубліковано 4 чер 2024
- In this episode of Eye School with Dr. D we discuss Sjogren's Syndrome. You'll learn what Sjogren's disease is as well as sjögren's syndrome symptoms and treatments.
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⏱️ Timecodes:
00:00 Intro
00:57 What is it?
01:32 Demographics
02:18 How it affect you
03:09 Tests and Bloodwork
04:25 Treatment
06:22 Case Study
Sjogren's syndrome is a chronic autoimmune disease. Autoimmune diseases occur when the body is attacking itself. Although Sjogren's is often listed as a dry eye/dry mouth disease, it is actually considered “Systemic” and therefore affects the whole body. Sjogren's is known for attacking the secretory glands, like the parotid that secretes saliva and the lacrimal that secretes the watery layer of your tears. That’s why Sjogren's is famous for causing dry eyes and a dry mouth.
Let's talk about Sjögren's Syndrome Symptoms - In addition to dry eyes and a dry mouth, Sjogren's disease patients often have a general sense of fatigue as well as potentially some joint pain or digestive issues. This depends on the patient but is due to the fact that Sjogren's is a systemic autoimmune disease. The Sjogrens foundation also lists more systemic issues like dysfunction of the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and even the nervous system.
Sjogren’s is fairly common in general and certainly very commonly seen in dry eye clinics like mine. However, often my patients have not yet been diagnosed with Sjogren's.
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🏡 We are Salisbury Eyecare and Eyewear - a cold start optometry practice and optical shop that is owned and operated by Dr. Melanie Denton Dombrowski in downtown Salisbury, NC. Our office operates out of a darling Victorian home where we provide medical and routine eye care and Dr. Denton specializes in dry eye treatment and management of various ocular diseases. Dr. Denton is a member of the Bausch and Lomb Speakers Bureau, a former member of the Alcon Contact Lens Speakers Bureau, a current Alcon consultant, a member of the Allergan Advisory Board, a member of the Valeant Advisory Board, a TearCare consultant, a Lumenis consultant, and a member of the North Carolina Board of Examiners for the North Carolina Optometric Board. We started this channel to provide patient education and eye-related product reviews, as well as to share our experiences in the office and at community events. None of our videos are directly sponsored. We hope you enjoy our videos! Make sure to leave comments and suggestions about what you’d like to see next!
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Thank you for your video on Sjogrens. I was diagnosed with Sjogrens, RA and many other auto-immune disorders when I was about 64. I am now 77. It is a continual challenge to take care of my eyes and mouth.
Thanks, Dawn. I’m unfamiliar with Lacrisert and will ask my doctor about it at my next checkup!
Wish you were in so cal! I am definitely going through it right now. I can't cry tears and I'm sure a salvary gland is blocked. I am dehydrated now and much more....
Amazing info!!!!!!
I have sjogren’s and have been on Restasis for about 15 years. I’ve had my tear ducts cauterized, and have had lipiflow twice. My eyes are constantly dry and consistently irritated and painful. All my eye drops are preservative free as well.
Did you find any effective solutions Susan. I have similar experience. Did you find any effective solutions recently. Let me know.
I have dry eyes for more than 15 years .
I have been experiencing this kind of sjogrens situation for the past 3 years. Tried punctual plugs.Restasis, Genteal drops & gels & several things. Yet partly helpful. Is lipiflow helpful
I din't try lioflo as I didn't get effective feedbacks & expensive too.Please share any effective solutions. 🙏thanks
Have you tried blood drops
Great video! I also have an interest in Sjogren Syndrome but the oral manifestations! I even made a video of my own discussing it!!! Sjogren syndrome is a team sport
Hi Doc, I was just diagnosed last month by my Oral Surgeon and confirmed by my Eye Dr., I'm currently on Xiidra 2x/day, Iviza and Refresh Gel drops, but still, while somewhat better, I still eye irritation. Hydration is good. Thanks for your video, it's very helpful.
Thank you for the video and it has great content
I do candle meditation for months now, everyday 20 min. So far everything is good and research says candle gazing improves vision and strength of the eye muscles. Is there any negative effects of practicing candle meditation ?
I have meibomiam gland dysfunction, and Systemic sjogrens affecting my pns and cns, affecting my gi system and my cardiovascular system, and more...I also have ocular rosacea and blurry double vision intermittently each day...I asked my old eye care provider if ipl might help me...and the response was me being dropped as a patient...I saw a new eye doc who recommended autologous tear serum but refused to write a letter of med necessity even though insurance said they'd cover it if that letter was on file. Eye doc then said scleral lenses but again refused to write letter of med necessity....I need more help than what I'm able to get...I see a rheum who said just keep using eye drops and a 2nd who said they'd only consider eye drops or ivig...I'm on ivig for gastroparesis from sjogrens but now insurance will no longer cover that...I got my gi doc to rx pilocarpene...I'm on plaquenil now for about 6 months. What are your suggestions? I'm on restarts eye drops and preservative free otc eye drops. I have medicaid in KY. Doctors here are not very knowledgeable on sjogrens and refuse to treat mgd. Shouldn't I try to do what I can, to help with things that potentially could be improved? I know ipl is fda approved now for mgd. What about lipofliw or those others in the context of sjogrens? I feel like I am going blind. I can barely see at all on some days...
Have you tried autologous serum tears
@@balpreetsaini3727 would like to...have letter of medical necessity...having trouble getting insurance to cover anything
Hi, for clarity on the "green eye" pic you showed...were the 2 pics shown out of sequence? Because the 2nd one appeared with more green covering the entire eye, while the 1st one appeared with more spots of green in the eye. Just trying to properly connect what you're stating to what I'm seeing. I appreciate the info. as I have been diagnosed with Sjogrens per lab tests. I haven't been able to produce tears since 2011 & have very little saliva. Thanks so much!
I’m live in Denver, Co, what’s the best way to find a dry eye specialists?
Hi! I have HIv and suspect Sjogren's as my eyes are recently severely dry. Must I use cyclosporin or can I try Tyrvaya or both to alleviate my pain?
I have Sjogren's Syndrome and my eyes have never been that dry until I hit menopause. I don't know what to do anymore. I tried cequa and they burned my eyes so bad that I had to stop using them. I have to find a new eye doctor because the one I used to have only spent 5 minutes with me. I have been watching so many of your videos and they have taught me a lot. I pray I can find an eye doctor like you in my area.
i use refresh liquigel
I am so glad this video popped up in my feed. I am pretty convinced I need to find a different Ophthalmologist first off. I have been seeing my current one for 11 months and my dry eye treatment hasn't changed; Rataine drops 4x a day, Retaine ointment at night with an eye mask, humidifier next to my bed and warm eye compresses multiple times a day. I haven't had any change in my dry eyes or production of tears. She tested me for Sjogren's last year (the test was negative) but I am not convinced. I also have Achalasia which is another autoimmune disease that affects my esophagus/swallowing/digestion and idiopathic hypersomnia. Talk about symptoms over-lapping! LOL It's not just my mouth and eyes that are dry; it's my entire body. I haven't found a lotion or oil than can keep my skin moist. I've even gone into my pantry and used olive oil all over my body. My teeth have never been in such bad shape. I think I've spent enough money at the dentist to buy her a vacation home! Anyway, I didn't mean for this to be so long. Thank you for this video!
i had neg ssa antibodies but had lip biopsy which was very positive along with schmiers eye test positive
I think I bought my Dentist a new Mercedes! All for nothing! I'm down to 21 teeth and they just break off at the gum line. I'm 63 and lucky that my loss has been mainly back molars!
Thanks Dr 🙏
You're welcome 😊
Is there any studies on Sjogrens and artificial lens. I have a lens replacement in my left eye and have orbital pain and eye sensitivity more in my left eye then my right. I also have very bad headaches. My left side of my face swells .My nose runs constantly. I have sensitivity to GI Prep, nickle and Prozac, I can't find anything on this. I am currently on Re stasis. I have had my eyes tested and they are positive for dry eye. I use non-preservative eye drops and night time eye gel.
I recently had the inner lip biopsy done & I was told it was negative. I was diagnosed with Undifferentiated Connective Tissue Disease last year. So the rheumatologist has pretty much checked for everything! The dry eye/dry mouth is terrible but the joint pain is worst. And unfortunately they don't seem to be able to do anything.
So definitely an autoimmune component to your dryness if not technically sjo then! Yes it’s awful. Do you have a dry eye specialist?
@@EyeSchoolwithDrD there is no dry eye specialist in the Toledo Ohio area. I am now on Retassis but it is not helping. I have used it for 5 months. No improvement.
I'm curious, have you ever taken any medication that could be causing your current condition? (chemotherapy, Accutane?) I'm in the same boat as you, and I'm quite sure it's a result of taking Accutane well past the point I should've been on it.
Maybe look into your diet. The Wahls Protocol is a great book. 👍🏼
Just curious. I may be facing lip biopsy in near future. I’m a bit scared. Was it painful? I mean real painful or tolerable? If I do have to get one any suggestions for how or what to do to help with pain? How long is the worst of it? Yes, I am a scaredy-cat! We gotta do what we gotta do !!!TY
Thanks for any help! Also, does the eye ever feel normal again with those treatments?
i see major improvements in quality of life for sure
I have dry eyes cracked tounge and lips and my lips are always chaped. I have constant cavities and dry mouth and my salivary gland under my tounge swells up. My saliva feels thick all the time and have dry skin. Sometimes I have problems swallowing. My dry eyes just seems to be getting worse. I just turned 45. Could it be menopause or this syndrome. I took an ANA s test it was 1:2560 ?
Sounds to me like all the symptoms of that I have and I have skogrens and RA
It’s scary when you can’t swallow
Any ideas about something new to try? I’m on plaquenil, too. Thanks!
Lots of ideas. IPL has worked well, LLLT, Tearcare, Autologous Serum, Secretagogues....I've made videos on some of these things!
I will do my research before my next eye appointment, thank you!
I have all the symptoms but tested and got a negative result…can it be wrong?
Lacrisert is the best product I use for Sjogren's severe dry eye, I have a prescription for twice a day use .I got diagnosed after complaining about dry mouth, but I was already being treated for dry eye for years.
Thanks for sharing! I have worked with it before. Do you get a foreign body sensation from it like something is in your eye or not bad?
@@EyeSchoolwithDrD No foreign body sensation when it is properly placed in the lower eyelid. If I use it at night, it can travel to the upper eyelid during sleep, with is painful. Currently Lacrisert is unavailable, the FDA drug shortage website says it won't be resupplied until July 2023. Without it, I use Systane and a dot of ointment on my lower lid rim numerous times a day.
I've had Anhidrosis a little over 2 years. Lately I have a horribly dry mouth, triuble swallowing due to dry mouth. Burning mouth due to dry mouth. Get candida several times in my mouth
Dry, gritty eyes, no tears. My primary just decided to not be a primary. The whole office is shutting down. I only have an endo. You can't get in with a rheumatologist until years. I have no quality of life due to anhidrosis. I can't go outside when it's over 65F. Any ideas. I gave a disabled son I take care if as his father recently abandoned us. Ty
Dr. D, I messaged you a few weeks or so ago. I told you I was tested for sjogrens via rheumatologist and endocrinologist. The labs came back negative. You said you don’t test that way and mentioned that I should maybe get a sjogrens test via labcorp. I plan to do it asap. What I would like to ask is
How do I say to my dr. To. Give me a lab order? Should I just say “I would like to be tested specifically for sjogrens at labcorp? Or, is there anything else I should say?
Ex: rheumatologist,etc. did the other ssa???,etc.
will you please help me with how to approach this?
It’s called the SjO panel. If you search it online I believe they will list the specific proteins etc tested so you can be sure the lab order is written correctly. I use the labcorp link system to put orders through and it is an option to do the advanced panel so if your doc is linked to labcorp it will be in their system!
Dr. D, WOW, I can’t wait to meet you. Re: sjogrens, the dry eye specialist that I was able to see once before she left practice did recommend that I be dx. By rheumatologist and endocrinologist. I followed through. Both drs labs were normal. Suggest I see ENT for lip biopsy to just confirm. I did. ENT recommended she is willing to do lip biopsy however she didn’t feel necessary. Also if I did have sjogrens there was nothing more to do. So, why do it?
Wtd? Wtd?
I don’t send for lip biopsies anymore because the Sjo test is so good. Traditional ss-a and ss-b sjogrens testing misses a lot of early disease. Look for a Sjo test through labcorp!
I’m on my 4th and hopefully last rheumatologist who, contrary to the previous rheumatologist (RA & AS but SS never mentioned) believes I have Sjogren’s.
Significant dry eyes (like I can’t even open one or both in the morning when I wake up) dry mouth, lots of joint pain, G.I. issues, etc. I won’t list it all here but I wanted to thank you for posting this because he is not in favor of a lip biopsy either and my SSA and SSB came back negative (my RF as always abnormal high even tho colon removed due to severe UC diagnosis 5 years ago so other auto immune already exist).
My challenges he doesn’t believe that there is any treatment for what I have (outside of the OTC stuff). The diagnosis shows up as Sjogren’s “sicca” syndrome but I’m seeing more doctors out there say it’s not just a “dry” disease, but systemic. He does check my heart and lungs at every six-month visit but my primary follows me for much more as well as my G.I. so I’m wondering who to request pull this Sjo panel… I’m going to see if I can do it myself at LabCorp.
My first ophthalmology visit will be this month, so watching your channel is very helpful, as my optometrist did not pick up on anything earlier this year (just before my Sjogren’s diagnosis by my new rheumatologist).
Thanks again!
@@TheKarahLife I do want to add one thing. If you use OTC drops, use preservative free!!!
Also, I have to use a contour eye cover while sleeping. Fans, wind, etc. definitely affects my eyes.
@@pattyschrider1681 good point! Thanks! We have 3 fans in our bedroom 😬. I wondered about the moving cool air on me & just started using a night mask again & just picked up some of the PF drops. Gonna toss the old ones.
So I laughed out loud when you described the female patient with the huge bottle of water. It goes with me, everywhere. I cannot leave the house without it. Interesting video, thanks.
I use heat compress that is warmed in microwave twice a day, Restasis, egener-eyes, and Tyrvaya. This combo works well enough that I can read again. No tears when I cry for years, mostly numb eyes, though the treatment has restored some sensation. I'm negative for early Sjogren's panel, ANA, SSA and SSB but have high RF and more recently strongly positive anti-CCP. RA is mild at most with predominant Sjogren's symptoms including dry mouth, skin, intestinal symptoms and neuropathy.
Regener-eyes
Regener-eyes is eye drop made from human placenta. I use 3 times daily.
What are your neuropathy symptoms?
I’m 39. My ophthalmologist has been treating my chronic dry eye for 10 years. Have tried drops, gels, Lacrisert, plugs, restasis etc, do no avail. I feel like my eyes literally reject treatment. In fact, the Lacrisert inserts get bigger during usage. I wonder why he has not diagnosed me with this condition? Great video and thank you 😊
Also, severe dry mouth during the night I wake up and have zero saliva and feet hurt in the morning when I stand up.
@@ADvapes2493 have you looked into sjorgens
I have a positive ANA and high sjorgrens SSA antibodies but no severe symptoms. I'm only 30. What are the chances of me developing them later?
I'm not sure I can give you a numerical percentage or chance rating per say. But, in general with this information now I would look into getting into good habits when it comes to computer use, makeup hygiene, proactive artificial tears etc. I'd follow whatever your rheumatologist is saying for systemic tx but also do your best to set diet and lifestyle up now in such a way that it may help if your body is going to tend to be in a more inflamed state later in life. For women, menopause age is often when signs and symptoms start due to changing hormones.
@@EyeSchoolwithDrD thank you!!
Gosh you seem so amazing I wish you were my eye doc
Me too. It amazes how many docs don't know this information. In my experience they have always treated my sjogren's symptoms like it's just dry eye and not systemic. So frustrating to say the least.
I was diagnosed with Sjogrens A about 12 years ago, but I have had Chronic Fatigue Syndrome for 30 years. Two years ago I had kidney stones, diagnosed via bloodwork, urinalysis and x-rays. I had 2 shockwave lithotripsies, which did not bust up the remaining stones. I was supposed to have an invasive surgery to get the rest of the stones out, but never did because that's right when Covid hit and all postponable surgeries were postponed. I have Irritable Bowel Syndrome, and arthritis, tho apparetly not rheumatoid arthritis. I am 64 and can't remember feeling good anymore. Sleep disorder. The CFS is difficult to manage, but the Sjogren's is much worse. Dry skin, dry mouth, superdry eyes that ache all the time, and my joints are very sore. Everything is sore and my doc suspects fybromyalgia is in there somewhere. Muscle pain, skin problems (it looks like psoriasis, but apparently that isn't what it is.) My younger sister has CFS and Irritable Bowel Syndrome, and my older sister has had Lupus for 50+ years. Since the Sjogren's A was diagnosed, I developed Diabetes type 2.
I have to make an eye appointment soon, and frankly feel so discouraged about everything.
❤ blessings, that is so much to go through , you are not alone xo
Stay positive, eat clean whole foods, exercise and trust yourself.
You sound just like me! The eye pain, fatigue headaches and loss of who I was. This is what happens when you have a disease that isn't popular and we don't make big money for the Pharmaceutical Companies. I was told there was nothing more that can be done at this time as I am on standard treatment. I have studied this so much I believe I know more then most doctors. We can't give up the fight!
Hi Dr., I’m wondering if there is a way to know if Sjogren or Lupus is causing dry eye or if climate, medication, lasik is the only reason? I had lasik in 2019 and suffer severe dry eye and dry mouth. Dentist has been following for years because even with proper hygiene I’m having inflammation and gum recession. I live in a very dry climate and also take Adderall and Lithium which don’t help with dryness. I was putting in artificial tears constantly and miserable. Even while off Lithium for a year I was miserable. I recently had extremely high ANA and slightly elevated CRP but negative for Sjogren and Lupus antibodies though I have symptoms. I’m being referred to Rheumatologist but feel hopeless. I guess I’m just wondering how do I know if this is autoimmune vs the climate, medications and lasik? I recently went to my lasik surgeon who looked at my eye and said with light in producing some tears but they’re evacuating rapidly. Faster than 10 seconds which they said is the absolute minimum they like to see. They couldn’t give me a schirmers test to measure how many tears are produced but gave me autologous serum tears. These have helped me at least not be miserable though I continue with the dry eyes. I hate with autoimmune you can have it and it take a while to get bad enough to show in blood work. Idk what to do. Can you reassure me one way or the other and tell me how common it is to have this degree of dryness just from the factors I mentioned vs when it starts leaning more towards an underlying problem? My lasik surgeon said most only have mild dry eye during 6-12 months healing. Mine took so long to heal and I had blurry vision for a month and now the dryness causes mild blurry vision and low order aberrations
I have been diagnosed with Sjogrens. I have tried Restatis and Xidra. I feel like they make my eyes even drier. To the point that it feels like a migraine. It hurts to even close my eyes and sleep at night. Night time is worse. Can dry eyes be painful not just discomfort? I’m desperate. I’ve tried plugs, drops, plaquinil, eye covers, gel drops, everything! Thanks
Yes for sure dry eye can be painful! Have you done autologous serum? IPL? It can take a while to find the right combination of therapies!
@@EyeSchoolwithDrD I have never heard of either option. I can definitely ask. I even feel like one eye is bigger than the other now. My left eye hurts more than my right. Thank your for your info. Your videos are very informative
@@etercero57 I did a video on IPL but haven’t done one on autologous serum yet.
I have also been diagnosed with Sjogren’s and have tried the same medications. I will be exploring the use of sclera lens for dry eyes. I believe @Eye School with Dr. D did a video on them. They are NOT cheap but might be an option worth exploring.
@@MargaretinOhio yes sclerals are a great option and some vision plans even cover them. I did do a video awhile back. I can find you the link if you can’t find it!
I wonder what eye makeup I can use with this syndrome. argh!
Check out eyes are the story and twenty twenty beauty. Eyes are the story has a liner and mascara that are designed with the eyes in mind!
I am a patient of sjogrens syndrome
I got diagnosed at 69! Arkans
Do you think i have Sjogren’s syndrome? Did i get my symptoms in bacterial, viral or fungal infection? Did i get it from my laundry from my underwear? because maybe I have bacterial, viral or fungal infection. The dirty water from my laundry spreads to my body, my eyes, my mouth. Do you think i have Sjögren’s syndrome?