Just the dry eyes alone is terrible. On bad days, I am putting drops in every 5 minutes. At night, my eyes get so dry they feel terrible, and I put drops in at night too. I've got lupus and sjogrens. I'm taking plaquenil, cequa eye drops, and am on prednisone currently also. So far, nothing really seems to help. I'm so tired, and don't feel good, that I can do almost none of my regular projects around the house.
I was just diagnosed with Sjogren’s a few months ago. Mine is advanced according to the Rheumatologist because I’ve used NSAIDS for muscle aches & pains for a long time and they suppressed some of the symptoms. My full diagnosis is Multiple Connective Tissue Disorder with Lupus dominant traits and Sjogren’s. The reason I’m responding is there are some things you can do to maybe help with your intense dry eye symptoms. My eye doctor (just thinking I had a weird case of severe dry eye because it was the most obvious problem) first had me go on a daily supplement called Fortifeye. It made a difference in within 2 weeks. I use TheraTears drops all day long and then Genteal eye ointment (not the drops) at bedtime. On top of that, she explained that as we sleep, the fluid around our eyes settles because we aren’t blinking and our natural eye lubricants become thicker and start us off with drier eyes everyday. She has me do a warm compress on my eyes in the morning to help thin the oils so they can work better. I also have to take Xiidra twice a day. I see/feel marked improvement when I do it all but still have a ton less discomfort w/warm compress, supplement, and the prescription drops and the Theratears. I bought an eye heating pad (Amazon) that allows you to set the temp and duration because a warm damp cloth cools down to quickly. I use the lowest setting for 15-20 minutes and it does really help. I hope you can find some relief for this crazy disease.
I had really bad Sjogren’s until I removed my breast implants. My eyes were so ulcerated, I couldn’t even sit by the fireplace nor drive. I saw a cornea specialist who gave me scleral lenses, plugged my tear ducts, but I have an allergy to the silicone. I still have it, but control it with my diet.
I have secondary Sjogrens with many other autoimmune diseases. My RA doctor sent me to an ophthalmologist and since I was already on prednisone (steroids for my joints ) they suggest that I get prednisone eye drops! I was taking an antihistamine eye drop and that is water based. I don’t have an allergy so these drops wouldn’t help! With sjogrens you need an oil based eye drop! Stay away from water based. Your eyes need an oil base fluid for relief because you are not producing enough eye oils. Hope this helps
@@KenMcKim Retaine Mgd Ophthalmic Emulsion Eye Drops - 30 Single-Dose Vials and prednisone eye drops gave me so much relief! My eye was producing too many tears … too much water made my eye dry and no eye oils. Recipe for disaster 😂
Thank you for this clear information. I agree with what you said about most information out there makes it sound like a minor condition. I recently got diagnosed and I’m starting treatment with hydrocloraquine. But it takes three months before it really starts to help with the joint pain . I appreciate you making this video I’m going to get my husband to watch it so he understands the symptoms.
My husband has primary Sjogren’s. It hit him like a train 7 months ago. He had had extreme lethargy and fatigue for a long time, lost 30 lbs in a couple months, had his ANA tested and it was over 1200. He had the Sjogren’s marker as well. He has not worked a full week since last summer. He has very extreme symptoms and thanks to your video here I can understand a bit more about how to help him and how we can transition to this phase of our life and figure out if he can continue to work. Thanks for this info.
Thank you for this I have probably a Sjogren’s was diagnosed in my 40s I am now 60 years old and I am unable to work full-time. It’s very difficult to thesis and to make it financially my joint pain and fatigue and extreme brain fog along with the other symptoms /issues - dry eye / vision issues mouth - dental issues. This disease is much more serious, systemic, and complex than just being considered a little dry and bothersome dry mouth. Thank you for acknowledging this and for the information
Hello My Name is Arlene. I am watching your video. I am 75yrs of age. I have been recently diagnosed with Sjorgrens I also suffer from Ceiliac Disease and have runaround arthritis. I am a Canadian with no family doctor and I desperately need help.😅 Y oral surgeons are trying to find a family doctor. I recently received a message from SS saying lib byopsyd are not really beneficial 😊
Ken, I was glad to see there was a study about the increased amount of ATG5 protein in Sjogren's patients with dry eye and that it might be a test in the diagnosis of Sjogren's. Have you heard any more about this test? All the Sjogren's you tube videos have nothing to say about this as a diagnostic tool. I wonder if any doctor is performing it.
DULOXATINE SAVED ME. I COULDN'T TAKE THE PAIN MUCH LONGER. I was also tired all the time. My life was terrible. First, I got rid of sugar and weight. I was no longer tired. Next, I found Duloxatine. I was in pain for 2 years straight. My life is so much better. Though now I have foot pain and itching arms. It never seems to end. But it's better.
I have been noticing more fatigue, my eyes are dry and sometimes it get red irritated and I get tingling half of my left face that comes and go.. , my fingers hurts when waking up in the morning.. I drink water but my mouth get’s dry quicker than usual. Noticing more body aches and recently told that I have 1.9cm found a cyst on my right kidney. Before took blood test and found inflammation somewhere in my body but unknown what causes.. Noticed a hair loss on my legs, and get more dry skin…, sometimes my tear duck is swelling..
I will know my results in January. To see which one of these I have, Sjogens Epstein Bar or Lupus. I feel like it's Sjogen. OH to go with my Fibromyalgia and Raynaud's. I have all the symptoms of Sjogen. Thanks for the update
@@KenMcKim thank you very much. Your videos have helped me a lot to understand what was going on with my body. It helped me to explain to my doctor how I feel and what I have been doing. I'm alive but very miserable. I always try to be a happy person. And I always wake up in a happy mood. Now I understand why I have other problems besides my Fibromyalgia and Raynaud's. I've already lost the extremity in my toes. But I will take care of myself the best I can. 🙏
Just the dry eyes alone is terrible. On bad days, I am putting drops in every 5 minutes. At night, my eyes get so dry they feel terrible, and I put drops in at night too. I've got lupus and sjogrens. I'm taking plaquenil, cequa eye drops, and am on prednisone currently also. So far, nothing really seems to help. I'm so tired, and don't feel good, that I can do almost none of my regular projects around the house.
I was just diagnosed with Sjogren’s a few months ago. Mine is advanced according to the Rheumatologist because I’ve used NSAIDS for muscle aches & pains for a long time and they suppressed some of the symptoms. My full diagnosis is Multiple Connective Tissue Disorder with Lupus dominant traits and Sjogren’s.
The reason I’m responding is there are some things you can do to maybe help with your intense dry eye symptoms. My eye doctor (just thinking I had a weird case of severe dry eye because it was the most obvious problem) first had me go on a daily supplement called Fortifeye. It made a difference in within 2 weeks. I use TheraTears drops all day long and then Genteal eye ointment (not the drops) at bedtime. On top of that, she explained that as we sleep, the fluid around our eyes settles because we aren’t blinking and our natural eye lubricants become thicker and start us off with drier eyes everyday.
She has me do a warm compress on my eyes in the morning to help thin the oils so they can work better. I also have to take Xiidra twice a day. I see/feel marked improvement when I do it all but still have a ton less discomfort w/warm compress, supplement, and the prescription drops and the Theratears. I bought an eye heating pad (Amazon) that allows you to set the temp and duration because a warm damp cloth cools down to quickly. I use the lowest setting for 15-20 minutes and it does really help.
I hope you can find some relief for this crazy disease.
I had really bad Sjogren’s until I removed my breast implants. My eyes were so ulcerated, I couldn’t even sit by the fireplace nor drive. I saw a cornea specialist who gave me scleral lenses, plugged my tear ducts, but I have an allergy to the silicone.
I still have it, but control it with my diet.
@@Tinyteacher1111hi have implatans from 2008 now have 37 years i dont know what do to have ss and ra from mount ago and hasimoto hipotireoza 20 y
I have secondary Sjogrens with many other autoimmune diseases. My RA doctor sent me to an ophthalmologist and since I was already on prednisone (steroids for my joints ) they suggest that I get prednisone eye drops! I was taking an antihistamine eye drop and that is water based. I don’t have an allergy so these drops wouldn’t help! With sjogrens you need an oil based eye drop! Stay away from water based. Your eyes need an oil base fluid for relief because you are not producing enough eye oils. Hope this helps
Thats true ! ❤ and why we do not have enough fat on eye surface - due to hormonal imbalance that affects on our natural oil composition.
This is good information to know ♥️
@@KenMcKim Retaine Mgd Ophthalmic Emulsion Eye Drops - 30 Single-Dose Vials and prednisone eye drops gave me so much relief! My eye was producing too many tears … too much water made my eye dry and no eye oils. Recipe for disaster 😂
Karlove8706 Retaine eye drops at Walmart or CVS are good & prescription restasis.
@@pamcarter3214 I had coupled the both together and received the best relief EVER! Retaine is awesome… a little pricey ($30 usd) but it works!
Thank you for this clear information. I agree with what you said about most information out there makes it sound like a minor condition. I recently got diagnosed and I’m starting treatment with hydrocloraquine. But it takes three months before it really starts to help with the joint pain . I appreciate you making this video I’m going to get my husband to watch it so he understands the symptoms.
I am so glad you found the video to be useful for you ♥️
My husband has primary Sjogren’s. It hit him like a train 7 months ago. He had had extreme lethargy and fatigue for a long time, lost 30 lbs in a couple months, had his ANA tested and it was over 1200.
He had the Sjogren’s marker as well. He has not worked a full week since last summer. He has very extreme symptoms and thanks to your video here I can understand a bit more about how to help him and how we can transition to this phase of our life and figure out if he can continue to work. Thanks for this info.
I'm glad the video was helpful, and I'm glad he has you looking out for him 🥰
@@KenMcKimit’s a learning experience, there is not a whole lot of newer videos especially info on Sjogren’s from a man’s perspective.
Ken Your Back!!💛💛💛
Thank you for this I have probably a Sjogren’s was diagnosed in my 40s I am now 60 years old and I am unable to work full-time. It’s very difficult to thesis and to make it financially my joint pain and fatigue and extreme brain fog along with the other symptoms /issues - dry eye / vision issues mouth - dental issues. This disease is much more serious, systemic, and complex than just being considered a little dry and bothersome dry mouth.
Thank you for acknowledging this and for the information
You’re welcome ☺️ Take care ♥️
Hello
My Name is Arlene. I am watching your video. I am 75yrs of age. I have been recently diagnosed with Sjorgrens I also suffer from Ceiliac Disease and have runaround arthritis. I am a Canadian with no family doctor and I desperately need help.😅 Y oral surgeons are trying to find a family doctor. I recently received a message from SS saying lib byopsyd are not really beneficial
😊
Ken, I was glad to see there was a study about the increased amount of ATG5 protein in Sjogren's patients with dry eye and that it might be a test in the diagnosis of Sjogren's. Have you heard any more about this test? All the Sjogren's you tube videos have nothing to say about this as a diagnostic tool. I wonder if any doctor is performing it.
I haven't heard anything new 😟
@@KenMcKim I'll keep looking and asking the Sjogren docs online.
DULOXATINE SAVED ME. I COULDN'T TAKE THE PAIN MUCH LONGER. I was also tired all the time. My life was terrible. First, I got rid of sugar and weight. I was no longer tired. Next, I found Duloxatine. I was in pain for 2 years straight. My life is so much better. Though now I have foot pain and itching arms. It never seems to end. But it's better.
I’m glad you found something that works for you 🙂
@@KenMcKim Thank you! I feel very fortune. I hear it only helps about 1/3.
Glad to hear you were the 1 in that statistic ❤️
Thank you, Ken!
You're very welcome ♥️
God Bless you 🙏
I have been noticing more fatigue, my eyes are dry and sometimes it get red irritated and I get tingling half of my left face that comes and go.. , my fingers hurts when waking up in the morning.. I drink water but my mouth get’s dry quicker than usual. Noticing more body aches and recently told that I have 1.9cm found a cyst on my right kidney. Before took blood test and found inflammation somewhere in my body but unknown what causes.. Noticed a hair loss on my legs, and get more dry skin…, sometimes my tear duck is swelling..
So sorry you are going through this. Have you spoken with a doctor?
Thank you!
You’re welcome ☺️
How do you get diagnosed, $$ opthmos ignore us here.
You need a rheumatologist
Lip biopsy to get diagnosis
Start with a gastrointerologist. Ove been trying for help fot 20 years. Unqualified docs. Got help now🎉
I will know my results in January. To see which one of these I have, Sjogens Epstein Bar or Lupus. I feel like it's Sjogen. OH to go with my Fibromyalgia and Raynaud's. I have all the symptoms of Sjogen. Thanks for the update
Take care of yourself ♥️
@@KenMcKim thank you very much. Your videos have helped me a lot to understand what was going on with my body.
It helped me to explain to my doctor how I feel and what I have been doing.
I'm alive but very miserable. I always try to be a happy person. And I always wake up in a happy mood.
Now I understand why I have other problems besides my Fibromyalgia and Raynaud's. I've already lost the extremity in my toes. But I will take care of myself the best I can. 🙏
OK. That's depressing
i have it
Covid triggers mine
I am so sorry, that sounds awful