To complicate things, not only do tears lubricate the eyes, the shedding of tears reduces stress and releases toxins from the body. So those of us who are unable to cry are hit with a double whammy. We have dry eyes because we cannot produce tears, and we are unable to use tears to de stress, which everyone knows can lead to more physical illness. It’s a viscous circle.
No Kaz I have not had the Schirmer's test. I will be going back to the ophthalmologist at the end of this month to confirm or deny the fact that I have glaucoma....Right now, that is my big concern. However I will ask him about the strip test to see if he sees a need for it. thanks for the links.
Kaz said:
Have you both (Qadosh2him and Ethansmom) had the Schirmers strip test? If not, you need to have it done to see what level of moisture is in your eyes. The weather will also affect your eyes, the drier the weather, the drier your eyes will be.
There also is another test (it's actually an old test but they're finding it may be more specific for Sj and other issues) where they test for the protein lactoferrin on the ocular surface.http://www.revophth.com/content/d/dry_eye/c/38025/
Here's the link to the Schirmers test:
http://www.nlm.nih.gov/medlineplus/ency/article/003501.htm
What's interesting is that I never had a Schirmers test. The eye doctor said it wasn't particularly useful, and was overly subjective. It wasn't necessary for my diagnosis.
My doctor didn't do the test but he did comment and said my eyes are very dry. He did TONs of tests. He was quiet the whole time and at the end had a suspicion of glaucoma.Ihave to go back for one or two more tests to confirm this.
Hello Ethansmon,
Welcome!
I haven't had the problem of not being able to produce any moisture, yet. It's also common to produce some moisture, but not the right kind. I don't know the details, but your eyes need a certain kind of moisture to stay healthy.
But your posting reminded me, has anyone seen "House" recently?
For those unfamiliar with House it's a sitcom medical show where they have someone with a list of symptoms and the medical staff are all trying to figure out what's going on.
I recently saw an episode where the patient had Sjogren's. Thank god I've never been sick anywhere near as bad as she was. It was kind of scary actually. Keep in mind, this is a TV show and they want it to be as interesting as possible. House thought of Sjogren's and to test his theory he cut up an onion in front of her and then put the onion right up to her face. She didn't react or tear at all.
Has anyone had this experience? Onions still make my eyes water. I would think even if you couldn't produce tears, the fumes would still make your eyes hurt.
Josh
Kaz,
I definitely agree you should look into other rheumatologists. You really need someone that will work with you, not fight you. It'd be one thing if she looked at all the labs and your medical history and felt you might have something different. But if she doesn't know what else it could be, then it seems like she may not be a good fit for you.
Josh
Kaz said:
Did you test positive to SSA and SSB? Only approx. 40% of people test positive to these blood tests, if one doesn't, schirmers is the only true test to determine Sjogrens along with a saliva production test. One can also have a lip biopsy.
The schirmer test is not subjective, it is objective as it is an actual measurement. As long as a person does not use drops for approx. 24-48 hours prior they are very accurate as it measures the true moisture of the eye. If one is constantly using drops it may give a false reading. It is the only true way to actually know the state of the moisture levels of the eyes.
When I first presented at the ompthamologist for investigation I thought my eyes felt normal. I had had a bad spell when in hospital of the gritty cut glass and a flare up of my joints etc., but at the time was in for an MS attack and had IV steroids - the two like to piggy back each other. If MS flares, the Sj flares and vice versa. I tested negative for SSA and SSB, but as mentioned only approx. 40% ever test positive.Then I was sent to get the eyes tested which was weeks after as I was in hospital for a while.
When I had the test I already had many corneal abrasions but my eyes felt normal to me (which I now know if far from normal) and I had under 5% of moisture in my eyes. He was shocked I thought they felt normal and said on my bad days there obviously is no moisture at all. My eyes even with cauterisation of ducts and use of gels and drops still rates low on moisture but better than before. I don't feel that constant scraping of my eyes each time I blink, and I have been pretty good on the abrasion side for the last maybe year now. :-)
I then had salivary production tests and also showed positive, as in next to no production- active disease. I am actually having a lip biopsy so that I can have confirmed diagnosis with all three. I don't need to have it done, but have decided I will have it done as I have had an issue with my new rheumatologist (last 2 were fine. but they moved to another hospital and I ended up with the replacement) but she relies solely on blood tests for diagnosis even though it is only 40%...
So to basically shut her up I am having the lip biopsy done. My immunologist has stated she believes 100% that it is Sj as I have all the signs and symptoms just neg bloods which she sees a lot with it. So in order to not have conflict with my rhuematologist I will have this done. Then she can't argue with me. Mind you she has no suggestion as to what else it could be...
Basically she has disputed the opthamologist, the specialist dentist, the immunologist and two other rheumatologists. But hey she knows better, but can't tell me what it is then if I don't have it. She's a really aggressive doctor too. Not that long out of her time but knows all. Whereas, the others have been specialists for a long time. Don't like her at all. Going to ask the immunologist who else in that department is ok so as I can transfer. But will get this done so I don't have to encounter her hostility.
Yes, the only "problem" I've had, or noticed Ihave is that my right eye will just randomly run tears..If I tilt my head to that side or lay on apillow or put on makeup, water just dribbles down my face. However I haven't cried with the exception of two tears at a recent funeral. However I have noticed that I rub my eyes as they feel tired and gritty. Plus my vision has changed markedly...gotten much blurrier.
However , I have NO spit hardly at all. I cannot eat bread, crackers, meats, ...they just turn to solid balls of dry mush and get stuck in my throat. Ihave to slug down liquid and swallow my bites like pills...but if the bite is too big.....well I've had some scary moments. Also I have trouble talking..My tongue cleaves to the roof of my mouth. I originally attributed it to medication dry mouth but I've had no new meds. And if I'm at all nervous...forget about being able to talk..
And now glaucoma and cataracts are making an appearance. I have one more test for the 21st of ths month to confirm or dismiss that suspicion. He said my nerves behind my eyes are very thin and that is a symptom of glaucoma. I'm not sure if he tested the pressure in my eyes...he was doing so many different thngs ...I didn't feel that puff of air...but it is altogether possible that it escaped my notice....I tested positive for Sjogrens in a blood test...but that's all I know..I don't know what type ...I suspect it's secondary because I've had PsA for 6 years and the eye issues are much more recent. 2 years ago my optomotrist told me I must go to an ophthalmologist and I ignored her advice until recently. She told me at that point that I am losing my peripheral vision...which is also a symptom of glaucoma.
I have severe dry eyes, in fact that's how I was finally diagnosed at the age of 60 this year. The doctor I go to is a cornea specialist. He started me on RX: Alrex (corticosteroids drops) 4x/day for three week, then for 2x/day for two more weeks then stopped them. He also has me on RX: Restasis 2x/day & to otc's meds: Tears Again Eyelid Spray 4x/day & Tears Again Ointment while sleeping. I also discovered an item while watching the doctors TV show which helped tremendously. They are call Tranquil Eyes (They are goggles of various types, the pair I purchased have a moisture treatment or a cold treatment - one to keep the moisture in & the other to help relieve any pain & swelling). The best prices for the OTC's (Over the counter item & goggles was found on-line). Make sure you look for extra RX discount cards on-line from the manufacturers. I do have RX non-medicare coverage & the discount card take $20 off of the total I have to pay! The cornea doctor I go to does not want to put any plugs in my eyes yet or never unless he it's a must. He said I was the third worse case he has ever seen. When I went back after my 1st visit, he said dryness of eyes was 50% better but they still were severely dry. One eye is dryer than the other, it's the eye I see better out of but it's also the eye that retains some fluid above the eye when I wake up everyday. They ruled out the drainage problem from sinuses or allergies. The cornea specialist sells the Tranquil eyes goggles & Tears Again products, but I had already discovered the Tranquil eyes several years ago, before I new it was Sjogren's & they were very helpful, I had chronic conjunctivitis & blepharitis(CC&B) in both eyes, eventually I didn't have to wear them but I did have to have ointment at night, it's cleared up the CC&B but not the dryness. Sometimes I didn't know why my sight was so different at times and so hard to focus, I could see but something was not right! Now I know why! I have to stay on the Restasis & Tears again for the rest of my life, sometimes I still add Systane artificial tears in between everything else if they really burn. I used to use them all day & in particular in the morning to wash out my entire eyes before he put me on the Restasis & Teas Again! My cornea specialist is in Lawrenceville, NJ/Central NJ/Dr. Chirag Shah! I think the goggles are made by Ecco. I hope this helps you. Hang in there!
Every single word you have spoken here sounds as if I wrote it....every single fact. My dear friend, you are on top of things and you are doing everything you can possibly do. You are the very first, that I have come across with this detail of treatments. I just turned 64. I also know that I had Sjogrens a lot longer than the day I received my diagnosis. The more I learn the more I absolutely know it was nearly ten years earlier.
May I ask, what other immune issues could you have? Sjogrens seems to bring along a partner.
Bless your heart. Thank you so much for the detailed entry. I find myself shaking my head with all you have on your lap and I know each day and your routine very well.
Thank you, lj
It's Me said:
I have severe dry eyes, in fact that's how I was finally diagnosed at the age of 60 this year. The doctor I go to is a cornea specialist. He started me on RX: Alrex (corticosteroids drops) 4x/day for three week, then for 2x/day for two more weeks then stopped them. He also has me on RX: Restasis 2x/day & to otc's meds: Tears Again Eyelid Spray 4x/day & Tears Again Ointment while sleeping. I also discovered an item while watching the doctors TV show which helped tremendously. They are call Tranquil Eyes (They are goggles of various types, the pair I purchased have a moisture treatment or a cold treatment - one to keep the moisture in & the other to help relieve any pain & swelling). The best prices for the OTC's (Over the counter item & goggles was found on-line). Make sure you look for extra RX discount cards on-line from the manufacturers. I do have RX non-medicare coverage & the discount card take $20 off of the total I have to pay! The cornea doctor I go to does not want to put any plugs in my eyes yet or never unless he it's a must. He said I was the third worse case he has ever seen. When I went back after my 1st visit, he said dryness of eyes was 50% better but they still were severely dry. One eye is dryer than the other, it's the eye I see better out of but it's also the eye that retains some fluid above the eye when I wake up everyday. They ruled out the drainage problem from sinuses or allergies. The cornea specialist sells the Tranquil eyes goggles & Tears Again products, but I had already discovered the Tranquil eyes several years ago, before I new it was Sjogren's & they were very helpful, I had chronic conjunctivitis & blepharitis(CC&B) in both eyes, eventually I didn't have to wear them but I did have to have ointment at night, it's cleared up the CC&B but not the dryness. Sometimes I didn't know why my sight was so different at times and so hard to focus, I could see but something was not right! Now I know why! I have to stay on the Restasis & Tears again for the rest of my life, sometimes I still add Systane artificial tears in between everything else if they really burn. I used to use them all day & in particular in the morning to wash out my entire eyes before he put me on the Restasis & Teas Again! My cornea specialist is in Lawrenceville, NJ/Central NJ/Dr. Chirag Shah! I think the goggles are made by Ecco. I hope this helps you. Hang in there!
Laura said:
Every single word you have spoken here sounds as if I wrote it....every single fact. My dear friend, you are on top of things and you are doing everything you can possibly do. You are the very first, that I have come across with this detail of treatments. I just turned 64. I also know that I had Sjogrens a lot longer than the day I received my diagnosis. The more I learn the more I absolutely know it was nearly ten years earlier.
May I ask, what other immune issues could you have? Sjogrens seems to bring along a partner.
Bless your heart. Thank you so much for the detailed entry. I find myself shaking my head with all you have on your lap and I know each day and your routine very well.
Thank you, lj
It's Me said:I have severe dry eyes, in fact that's how I was finally diagnosed at the age of 60 this year. The doctor I go to is a cornea specialist. He started me on RX: Alrex (corticosteroids drops) 4x/day for three week, then for 2x/day for two more weeks then stopped them. He also has me on RX: Restasis 2x/day & to otc's meds: Tears Again Eyelid Spray 4x/day & Tears Again Ointment while sleeping. I also discovered an item while watching the doctors TV show which helped tremendously. They are call Tranquil Eyes (They are goggles of various types, the pair I purchased have a moisture treatment or a cold treatment - one to keep the moisture in & the other to help relieve any pain & swelling). The best prices for the OTC's (Over the counter item & goggles was found on-line). Make sure you look for extra RX discount cards on-line from the manufacturers. I do have RX non-medicare coverage & the discount card take $20 off of the total I have to pay! The cornea doctor I go to does not want to put any plugs in my eyes yet or never unless he it's a must. He said I was the third worse case he has ever seen. When I went back after my 1st visit, he said dryness of eyes was 50% better but they still were severely dry. One eye is dryer than the other, it's the eye I see better out of but it's also the eye that retains some fluid above the eye when I wake up everyday. They ruled out the drainage problem from sinuses or allergies. The cornea specialist sells the Tranquil eyes goggles & Tears Again products, but I had already discovered the Tranquil eyes several years ago, before I new it was Sjogren's & they were very helpful, I had chronic conjunctivitis & blepharitis(CC&B) in both eyes, eventually I didn't have to wear them but I did have to have ointment at night, it's cleared up the CC&B but not the dryness. Sometimes I didn't know why my sight was so different at times and so hard to focus, I could see but something was not right! Now I know why! I have to stay on the Restasis & Tears again for the rest of my life, sometimes I still add Systane artificial tears in between everything else if they really burn. I used to use them all day & in particular in the morning to wash out my entire eyes before he put me on the Restasis & Teas Again! My cornea specialist is in Lawrenceville, NJ/Central NJ/Dr. Chirag Shah! I think the goggles are made by Ecco. I hope this helps you. Hang in there!
Kaz,
Thanks, I had a feeling the House episode wasn't exactly right.
The dry eye site has some good info on the different types of eye products.
Thanks,
Josh
Laura, I just typed in a long reply to you but I'm new to this. I saved my reply to above but don't know how to send it to you. I should have just done it through discussion. Maybe someone can help me retrieve my additional comments to you, so everyone can see them. Just in case it will help someone else too. Please let me know how to get the saved message out from it's hiding! Thanks!!! Anyone? I'll wait & be back just in case someone replies to let me know how do above!!!
It's Me said:
Laura, I just typed in a long reply to you but I'm new to this. I saved my reply to above but don't know how to send it to you. I should have just done it through discussion. Maybe someone can help me retrieve my additional comments to you, so everyone can see them. Just in case it will help someone else too. Please let me know how to get the saved message out from it's hiding! Thanks!!! Anyone? I'll wait & be back just in case someone replies to let me know how do above!!!
Just one more thought I have to find someone to do a hard copy...that is to get this articles and chat from lap top to my printer...this stuff is sooo good...I would love to have it in my medical binder, for others that do not know or understand Sjorgrens pain and suffering issues....I have even been rushed to emergency room and not one person had heard of Sjogrens.,, and they wanted the benedryl and some others that absolutely hit me hard. I keep a med list in billfold all the time...go to www.drugs,com they have a place for you to fill in all your meds and comments etc..and when you are done you can print a full size page and or a reduced on that you can get into your billfold. try it...its a good thing...
must close the insomnia has finally diminished and the eye sockets are feeling the pressure from the computer screen.
rest well, catch you tomorrow, everyone...lj
Laura said:
It's Me said:Laura, I just typed in a long reply to you but I'm new to this. I saved my reply to above but don't know how to send it to you. I should have just done it through discussion. Maybe someone can help me retrieve my additional comments to you, so everyone can see them. Just in case it will help someone else too. Please let me know how to get the saved message out from it's hiding! Thanks!!! Anyone? I'll wait & be back just in case someone replies to let me know how do above!!!
Hi Josh,
Thank you for the welcome! I was just diagnosed with SS in August but suspect I have had it for a while. I started with only the dry mouth. It seems to be picking up with the cold weather. I now have a dry nose and very dry eyes. I really don't cry that often. But it took me off guard when I had a very (what should have been) tearful moment only to produce little to nothing! It bothered me. But I guess it could be worse.
I will research the episode of House. What date was it on? I do like that show. As for the onion, I had very little of anything happen. My eyes just felt really uncomfortable.
Thanks for the heads up about House!
Shari
joshedu said:
Hello Ethansmon,
Welcome!
I haven't had the problem of not being able to produce any moisture, yet. It's also common to produce some moisture, but not the right kind. I don't know the details, but your eyes need a certain kind of moisture to stay healthy.
But your posting reminded me, has anyone seen "House" recently?
For those unfamiliar with House it's a sitcom medical show where they have someone with a list of symptoms and the medical staff are all trying to figure out what's going on.
I recently saw an episode where the patient had Sjogren's. Thank god I've never been sick anywhere near as bad as she was. It was kind of scary actually. Keep in mind, this is a TV show and they want it to be as interesting as possible. House thought of Sjogren's and to test his theory he cut up an onion in front of her and then put the onion right up to her face. She didn't react or tear at all.
Has anyone had this experience? Onions still make my eyes water. I would think even if you couldn't produce tears, the fumes would still make your eyes hurt.
Josh
Hi Kaz,
No, I haven't had any eye testing done yet. I am going to schedule an appointment to see an eye doctor asap. It just seems like the loss of eye moisture has happened all of the sudden. I am anxious to hear what the eye doctor says. Thank you so much for the information!!
Shari
Kaz said:
Have you both (Qadosh2him and Ethansmom) had the Schirmers strip test? If not, you need to have it done to see what level of moisture is in your eyes. The weather will also affect your eyes, the drier the weather, the drier your eyes will be.
There also is another test (it's actually an old test but they're finding it may be more specific for Sj and other issues) where they test for the protein lactoferrin on the ocular surface.http://www.revophth.com/content/d/dry_eye/c/38025/
Here's the link to the Schirmers test:
http://www.nlm.nih.gov/medlineplus/ency/article/003501.htm
Hi Kaz,
I tested positive for the SSB and had the lip biopsy to confirm. The lip biopsy was nasty.
I would definitely switch doctors as soon as possible!! They are to be your advocate! They work for YOU!! You are already going through enough. I have a doctor who doesn't agree with the fact that I won't start Plaquenil but she is at least respectful of my choice (in front of me anyway). You have a long journey in front of you and you need your physician by your side. Okay, I will now get off my soap box...
I think most everyone would agree, it sounds like you have Sjogren's without getting the nasty biopsy done. Even those are not 100%. I would only do it if you feel the need but certainly not for the doctor's sake.
Thank you for sharing your information with a newby like me. I am so grateful for everyone who shares on this forum!
Kindest Regards,
Shari
Kaz said:
Did you test positive to SSA and SSB? Only approx. 40% of people test positive to these blood tests, if one doesn't, schirmers is the only true test to determine Sjogrens along with a saliva production test. One can also have a lip biopsy.
The schirmer test is not subjective, it is objective as it is an actual measurement. As long as a person does not use drops for approx. 24-48 hours prior they are very accurate as it measures the true moisture of the eye. If one is constantly using drops it may give a false reading. It is the only true way to actually know the state of the moisture levels of the eyes.
When I first presented at the ompthamologist for investigation I thought my eyes felt normal. I had had a bad spell when in hospital of the gritty cut glass and a flare up of my joints etc., but at the time was in for an MS attack and had IV steroids - the two like to piggy back each other. If MS flares, the Sj flares and vice versa. I tested negative for SSA and SSB, but as mentioned only approx. 40% ever test positive.Then I was sent to get the eyes tested which was weeks after as I was in hospital for a while.
When I had the test I already had many corneal abrasions but my eyes felt normal to me (which I now know if far from normal) and I had under 5% of moisture in my eyes. He was shocked I thought they felt normal and said on my bad days there obviously is no moisture at all. My eyes even with cauterisation of ducts and use of gels and drops still rates low on moisture but better than before. I don't feel that constant scraping of my eyes each time I blink, and I have been pretty good on the abrasion side for the last maybe year now. :-)
I then had salivary production tests and also showed positive, as in next to no production- active disease. I am actually having a lip biopsy so that I can have confirmed diagnosis with all three. I don't need to have it done, but have decided I will have it done as I have had an issue with my new rheumatologist (last 2 were fine. but they moved to another hospital and I ended up with the replacement) but she relies solely on blood tests for diagnosis even though it is only 40%...
So to basically shut her up I am having the lip biopsy done. My immunologist has stated she believes 100% that it is Sj as I have all the signs and symptoms just neg bloods which she sees a lot with it. So in order to not have conflict with my rhuematologist I will have this done. Then she can't argue with me. Mind you she has no suggestion as to what else it could be...
Basically she has disputed the opthamologist, the specialist dentist, the immunologist and two other rheumatologists. But hey she knows better, but can't tell me what it is then if I don't have it. She's a really aggressive doctor too. Not that long out of her time but knows all. Whereas, the others have been specialists for a long time. Don't like her at all. Going to ask the immunologist who else in that department is ok so as I can transfer. But will get this done so I don't have to encounter her hostility.
I hope and pray you don't have glaucoma, my friend!! May all the tests be negative!
Qadosh2him said:
My doctor didn't do the test but he did comment and said my eyes are very dry. He did TONs of tests. He was quiet the whole time and at the end had a suspicion of glaucoma.Ihave to go back for one or two more tests to confirm this.
Thank you Ethansmom
I'm in a medical hospital right now...this time for a severe asthma attack. Hoping maybe to go home on Monday or Tues making the visit one week long. I'm glad now that my Eye doc is on the 21st so I can be someone better from this illness, ;particularly the very heavy doses of IV steroids which =as they alwys do-=have make my eyes so blurry that they are useless. I hope that does not interfere with the test for glaucoma....blessings to you.
Ethansmom said:
I hope and pray you don't have glaucoma, my friend!! May all the tests be negative!
Qadosh2him said:My doctor didn't do the test but he did comment and said my eyes are very dry. He did TONs of tests. He was quiet the whole time and at the end had a suspicion of glaucoma.Ihave to go back for one or two more tests to confirm this.
Shari,
It's quite common for people to have Sjogren's for years before being diagnosed. I had been sleeping with a cough drop every night for years to prevent my uvula from swelling painfully. Even a few hours of sleep would make my throat hurt. Then the eye problems started. I was showing signs for 10 yrs before my diagnosis. So, your in good company.
I can't remember when exactly when I saw it. I think it was last week. I did a search and it's from season 5 episode 5, called Lucky Thirteen.
Your response to the onion is very interesting. I thought they just made that part up for the show. I do know there are a lot of ways Sj can effect us. Glad to have you online with us.
Josh