Those with Dry Eyes as the Worst Symptom

[tiredndryinTN]

I've been lurking for quite awhile. Bloodwork has so far been negative. "Congrats. There's nothing wrong with you!!!" the bubbly nurse said on the phone.    I promptly told her thank you and goodbye, then sobbed for a full 30min. Docs are a joke here. "What's Sjogren's? Oh that? 37 year olds don't get that and your bloodwork is normal." And my deductible is astronomical. I could throw tens of thousands of dollars at this and only bankrupt my family and harm my children.

There IS something wrong with me. Since Dec, 1 month before I turned 37, I have had all the sicca symptoms. (Ok, looking back I had chronic fatigue and dry mouth for awhile first. Took zero meds to cause any of that. I just thought it was because I'd decreased my carbohydrates quite a bit and I was just a thirsty-gal. And even further back, I developed chronic fatigue and IBS-C in my late 20s after a 6-week battle with mono. That hindsight... ) Allergy season is evil since I get the sore throat, sinus headaches, and a feeling like my lungs are dry and it makes it hard to breath, but no runny nose or cough. I can't take antihistamines obviously. I get killed with fatigue midday onward. It smacks me in the face. It's frustrating. But the eyes manifested the last, and they are the worst. If I don't use Refresh PM, TheraTears Nighttime, AND Systane Ultra high performance gel drops, I get corneal erosions multiple times nightly in REM sleep. As is, I wake 4 to 6 times a night to reapply the drops to keep what I call "rips" at bay. And if I sleep too soundly and the lids stick, I have to hurriedly hold my lids closed, then frantically apply drops. IF I'm not too out of it to catch it in time. It's like taking care of a newborn all night, forever. It's exhausting. And I still occasionally do get a minor erosion, but they aren't on my pupil like they had been without my army of eye products, so though it hurts like hades, the scarring isn't damaging my vision more. My sinuses burn and my tongue turns white and my mouth sticks to my teeth a little, and I wake up tired and constantly need a nap (that I don't get). And there's the allergy response I mentioned that is going on as this is the time of year I always have problems. But I really need to start getting some sleep.

I suppose I can live forever waking 4-6 times a night, but I'm getting seriously worn down. This is going on 10 months of little sleep. I dread nighttime. I hate the wall I hit in the afternoon. I can tell you that it's close to 2pm without a clock. I crash. But I homeschool 4 kids, so no rest for the weary. One day I will break down and buy ear plugs and tell the 13-year-old to keep the littles from hurting themselves or tearing the house down and institute a daily nap for Mommy.

All that whining blabber to say: Has anyone taken a supplement or supplement combo that actually works to decrease eye dryness? Restasis and punctal plugs have not worked one bit. Humidifiers do nothing.  I've been taking turmeric: no difference. I took fish oil for a long time and developed the Sjogren's symptoms while taking it. I lost 92lb eating healthy and exercising, and then this happened and I feel more exhausted than ever.  I worked so hard to make my health pristine so I can be there for my children (and future grandchildren) for a long time, unlike my mom who died from prolonged illness, diabetic complications, and liver and kidney failure the end of May. I need to sleep. If that's at all possible. So my body needs to stop this nonsense. Or at least decrease it a little bit so I only have to wake 2 times a night instead of 6, being on-call to manage my eyes' crises.

Suggestions are greatly appreciated. I've read here, there, and everywhere. I'm getting confused, and can only spend money on a few things. Things that actually decrease dry eye symptoms. I've read about NAC, and CoQ10, and everything in the world that have helped with dry mouth for people, but dry mouth doesn't keep me from sleeping or cause pain like a mean little gnome has stabbed me in my eye.

I'm frustrated. Can you tell?   
TIA for reading my ramblings.

[Joe S.]

Welcome to the forum. The sinus infections, I have come to believe, are the cause of paratid glands not functioning (dry mouth). Dry mouth leads to dry eyes. Some where dry skin comes in. For me, it was with the asthma and sinus issues in grade school. Sjogrens / SICCA attacts all of our glands. They can produce more or produce less as our bodies try to cope. Bile glands may over produce and then under produce. You have sweats where you need to change you sheets so you do not drown then your skin is so dry that you step out of the shower and do not need a towel.

hydro eye brand glasses may help your eyes. (I still will find my self sleeping with one eye open from time to time). Finding coping methods that help you goes a long way to improving your life. If you have not read "Spoon Theory" do so, and have your family read it to help them understand.

pain...breath through it, meditate, carrot juice, and your favorite form of pain relievers can help. Panic and Anxiety can make the pain worse.

Acetyl-L-Carnitine and R-Lipoic Acid can repair some of the mitochondria genetic damage to genes 6 and 7. This helps to reduce you immune systems attack on these damaged cells. Nano-bacteria causes the damage. There are other supplements to reduce inflamation, modulate your immune system, and improve other issues that you face.

[Jasper]

Negative blood work does not mean you do not have Sjogren's. 40-50 % of people with Sjogren's have negative blood work. Have you seen a good Rheumatologist? Have you had a lip biopsy? Lip biopsy is the gold standard for diagnosis. If you have symptoms and your blood work is negative, I would suggest seeing a competent Rheumatologist at a large medical center/university who specializes in Sjogren's and get a lip biopsy.

About your question ..... My dry eyes were a problem for me until I started using Restasis 5 years ago. As long as I use Restasis I am okay.

I know you tried Restasis and it did not work for you. You obviously need something or you may end up with permanent damage. Opthamologists can order eye drops for dry yes. I would suggest seeing an opthamologist who has expertise in Sjogren's Disease. He/she could order eye drops for you.

Some people use Autologous eye drops made from your own serum. I know someone who uses them and they work for her. However, insurance may not cover them.

There is a new eye  drop for dry eyes (Lifitegrast ophthalmic solution (Xiidra, Shire) ) that has recently been approved by the FDA.

"The US Food and Drug Administration (FDA) has approved lifitegrast ophthalmic solution (Xiidra, Shire) for the treatment of signs and symptoms of dry eye disease.

Lifitegrast is the first lymphocyte function?associated antigen 1 antagonist approved by the FDA for dry eye disease. It is the only prescription eyedrop indicated for the treatment of both signs and symptoms of dry eye disease, and it is the first treatment to be approved for dry eye disease in more than a decade, Shire notes in a news release announcing approval.

"Normal tear production is needed for clear vision and eye health. This approval will provide a new treatment option for patients with dry eye disease," Edward Cox, MD, director of the Office of Antimicrobial Products in the FDA's Center for Drug Evaluation and Research, said in an FDA statement.

Dry eye disease affects roughly 5% of adults aged 30 to 40 years and 10% to 15% of those older than 65 years. It is more common in women. Severe, untreated dry eye can lead to pain, ulcers, or corneal scarring. .....

According to the company, in all four studies, a larger reduction in eye dryness score (EDS) was observed with lifitegrast ophthalmic solution at 6 and 12 weeks. In two of the studies, an improvement in EDS was seen with lifitegrast at 2 weeks. At 12 weeks, a larger reduction in inferior corneal staining score favoring lifitegrast was seen in three of the four studies. ..... "

[cccourt1942]

Hi dry in TN:  First thing first:  4 children in 13 years...actually, likely within about 8 years.  You say you are home schooling, so am figuring they are about 5 thru 13.  THIS task in and of itself has to be fatiguing to the best and youngest of parent.  In addition (to the instruction) you have planning, organization, grading, and instructional duties for all those levels...unless you have a 13 year old and then had triplets!  No matter the composition of your children, I hope I have said enough that you can read this back and realize what an undertaking this is.  I both question and admire homeshoolers.  I couldn't have done this as I had so much to do in my house alone.  I would choose one or the other..and the one unchosen would suffer.  I don't think it would have been my children.

I am not going to suggest you change anything in your life as I do not know you nor your rationale for your choices.  I support you w'out knowing you.  I respect a person's ability to make life choices.  Once you make a choice tho, one should feel good about it.  THAT is my challenge to you.  Do you feel GOOD? 

As to eyes, I had SjS symptoms from a bit older than you and was diagnosed at 71.  In my 40s an eye dr advised me of dry eyes asking "don't your eyes hurt?" and told me which type of OTC eye drop to use:  Individual vial type with no preservatives.  I used this product for about 25 years.  What I didn't know is that damage of  SjS was hurting my eyes.  NOT acuity.. surface.

Restasis did NOT make my eyes feel better....until about post 20 months.  Then--it happened.  I realized I was adding little to zero additional drops during the day.  The important thing I learned was from the ophthal:  after using Restasis for a year, he noted my eyes looked 100% better.  I told him they didn't feel 100% better.  btw: my lacrimals are hardened.  I haven't shed a tear in over 25 years.  My advice is to maintain the Restasis to avoid damage to your eyes while you fight the symptoms you are suffering so when you finally are diagnosed, your eyes will not have suffered. 

As to oral symptoms, OTC Xylimelts are wonderful and Biotene Gel will help on your tongue (swirl it around your teeth, gums, and roof of your mouth--for comfort) .  I am up at least 3 times a night going to the bathroom.  If I had to teach and keep a home after interrupted sleep...let me start that again:  IF I HAD TO TEACH , etc ..at age 37, etc...I would be a zombie.

One more thing:  find you a SjS friendly dentist.  Dry mouth (at night) can do irreparable damage to your teeth.  It is a miracle mine are still okay.  My teeth discolored...but nothing like other dental woes sjoggies suffer.  At this time in my life, the hygienist noted last cleaning (which I have done every 3 months) the placque was..whatever, here or there, was blah blah.  I commented about how good I am about brushing flossing...and she noted something I didn't know:  different levels of placque.  She said my placque was more indicative of "dry mouth" placque.  I don't even know if I believe this comment.  But ..it makes sense.  Just be aware.

Best to you and hope your day is going well.
Sjoldier c3

[tiredndryinTN]

I'm afraid further prescriptions or specialists are not in the cards. My insurance deductible is so high, its $7000/year. So my insurance won't cover anything until someone has a bad accident and has to be hospitalized. I'm not going to hope for that to happen. Restasis and Xiidra are both $425/mo out-of-pocket. Which does not reach the deductible. And since Restasis is not working, I will discontinue it when this current supply runs out. I can't justify spending $5000/year on a prescrip that doesn't work when I have a kid in braces and other kids who need new glasses. And my husband has encouraged me to give up on it. The only thing preventing further damage are the 3 OTC products (all recommended by the opthamologist) used in my eyes at night. The opthamologist can't do anything more for me. They have a procedure where they graft placenta onto the eyes to strengthen corneas. Of course I have to allow my corneas to erode (pain, scarring, and temporary vision loss) before it can be done. If I do it, the dryness will persist unchecked, and should I stop using the OTC products, erosions will occur again, ruining the $6000 procedure. I would be throwing $6000 in the trash that could have fed and clothed my children.

Further, finding a competent rheumy and a competent professional to do a biopsy (paid out-of-pocket) isn't likely, except maybe 2 or 3 hours away from where we live, just to get a prescrip that may not work (which I also have to pay out-of pocket.) Doctors and insurance companies do not care how bad your situation is. If you can't pay what they ask, then you don't get treatment. We are unable to pay $7000/year for the rest of my life on treatment that has no guarantee of success. Not without losing our home and short-changing my children's health and well-being.


The only option I have is to try supplements and to hope the supplements work so that I can eventually discontinue to use the 3 (not so inexpensive) products in my eyes as many times nightly. If I could just cut it down to 2 times...I would be happy with it. If nothing works, and I still have to get up 6 times a night, then I am strong and I'll make it work.

Joe S.-I have an online friend with fibromyalgia, so I have heard of Spoons Theory. Thank you for the information on how SJS works. And for the suggestions. I'll do some pricing and make a plan. I've been hoarding some Amazon giftcards I was given the past 2 years and I think they will cover a trial run for the supplements and the glasses. I try to eat carrots daily already. 

[tiredndryinTN]

Hi dry in TN:  First thing first:  4 children in 13 years...actually, likely within about 8 years.  You say you are home schooling, so am figuring they are about 5 thru 13.  THIS task in and of itself has to be fatiguing to the best and youngest of parent.  In addition (to the instruction) you have planning, organization, grading, and instructional duties for all those levels...unless you have a 13 year old and then had triplets!  No matter the composition of your children, I hope I have said enough that you can read this back and realize what an undertaking this is.  I both question and admire homeshoolers.  I couldn't have done this as I had so much to do in my house alone.  I would choose one or the other..and the one unchosen would suffer.  I don't think it would have been my children.

I am not going to suggest you change anything in your life as I do not know you nor your rationale for your choices.  I support you w'out knowing you.  I respect a person's ability to make life choices.  Once you make a choice tho, one should feel good about it.  THAT is my challenge to you.  Do you feel GOOD? 

As to eyes, I had SjS symptoms from a bit older than you and was diagnosed at 71.  In my 40s an eye dr advised me of dry eyes asking "don't your eyes hurt?" and told me which type of OTC eye drop to use:  Individual vial type with no preservatives.  I used this product for about 25 years.  What I didn't know is that damage of  SjS was hurting my eyes.  NOT acuity.. surface.

...

One more thing:  find you a SjS friendly dentist.  Dry mouth (at night) can do irreparable damage to your teeth.  It is a miracle mine are still okay.  My teeth discolored...but nothing like other dental woes sjoggies suffer.  At this time in my life, the hygienist noted last cleaning (which I have done every 3 months) the placque was..whatever, here or there, was blah blah.  I commented about how good I am about brushing flossing...and she noted something I didn't know:  different levels of placque.  She said my placque was more indicative of "dry mouth" placque.  I don't even know if I believe this comment.  But ..it makes sense.  Just be aware.

Best to you and hope your day is going well.
Sjoldier c3

Yes, they are 5, 7, 12, and the oldest will turn 14 in Nov.
Do I feel good? No. Do I feel good about the efforts and sacrifices I am making in this lengthy investment in their futures through educating them? Yes. It's my purpose. I feel it in my bones.

I do have a decent dentist. I chew sugar-free gum most of the afternoon. The dentist says that is good for preserving my teeth. I do produce some saliva still (so thankful), when chewing gum, but I don't think the quality is very good. When I eat anything crunchy, I get little cuts inside my mouth, which is irritating.

It could all be much worse. I do realize that. The symptoms I have, while frustrating and very annoying and tiring, could be so much worse. I am thankful they are not more acute. I am thankful I have found an OTC combo that keeps me from having nightly erosions. I'm thankful my bloodwork shows no other issues. I'm thankful I'm still able to manage to care for my family and my children's education.





Thank you all so much for your thoughts.

[ppk]

Honestly, all I've found that really works (and even then, it's not a full "cure") is TheraLife Autoimmune. It's a Chinese herbal medicine sold by Dr. Lily Yang. You can search the site:

theralife.com/

Please note, I do not work for TheraLife and I have no financial stake in the company.

And the frustrating thing is that TheraLife is very expensive - ~$140 for a month's supply, after shipping and taxes. But, we all know how bad dry eyes are, so the price is worth it (for me).

I really wish it would come down in price because I can't afford such a high monthly expenditure.

[Jenny]

Have you tried getting tear duct plugs?  I was miserable a couple of years ago. They helped me a lot but kept falling out. I then had my tear ducts cauterized and some days I can go without even using drops.

[araminta]

So sorry to hear about your troubles.

I think fatigue and dry eyes are the two symptoms that bother me the most.     A year ago an optician told me I had blepharitis, and suggested I use warm compresses morning and night, and clean the eyelids with Blephasol, as I had blepharitis.   This had no effect, and eventually the thing that helped was very diluted tea tree oil. 

So the blepharitis cleared up but I still ended up every evening with red eyes, and none of the eye drops/gels helped a lot      I had an appointment with an ophthalmologist last week, and she said my tear production seemed OK but she thought I had meibomian gland dysfunction - I'm wondering if you've got the same.   She prescribed Hylo Forte, which I have started using, I think it's a bit better than the dozen or so other things I've tried.  At night I use Lacrilube, or organic castor oil, which seem to prevent me waking up with that awful feeling of eyelids scraping against eyeballs.   

By the way your life does sound terribly hectic - are you taking enough care of your own wellbeing - I don't mean in terms of medical needs, I mean in terms of getting enough rest and relaxation? :

[Wal]

I'm sorry you're struggling. I'm your age with two small children. I have some understanding of how hard it is to deal with symptoms while still child rearing. I've had dry eye and mouth that started in January of this year. They both wax and wane in intensity. When my eyes are bad my mouth is milder and vice versa. I'm currently in a milder  dry eye phase though my mouth has been more aggravated. I don't have a diagnosis yet. Will see a rheum in Oct. I do know that I have MGD. Mebobian gland disorder. Do you have that? I've used lots of drops to no avail and I had plugs which did nothing. It wasn't until I started using Retain drops that have lipids in them along warm compresses on my eye plus a massage on the lids after the compress that I started to feel a littl relief. It got better and better. At this current time I do t have to use drops more than once or twice a day. Now that can change tomorrow but so far I'm in more of a remission with the eyes.

[Carolina]

Since my latest health crisis I've doubled my Pilocarpine, and that seems to help with my eyes.

Dry eye is usually worse at night because we have our eyes closed, depriving them of the oxygen they needs to produce some healthy tear film

That's why we get that sticky 'sleep' in the corners of our eyes, even without dry eye.

Regards,  Elaine

[tiredndryinTN]

By the way your life does sound terribly hectic - are you taking enough care of your own wellbeing - I don't mean in terms of medical needs, I mean in terms of getting enough rest and relaxation? :

Thanks. No I'm not getting enough rest. It's all a Catch-22. My symptoms need to go into remission a bit for me to get enough rest. But the remission probably needs more rest to be achieved.  I do the best I can. But as I've joked, ear plugs and a threatened older daughter to keep the littles occupied is probably in the near future, so mommy can nap.

I'm sorry you're struggling. I'm your age with two small children. I have some understanding of how hard it is to deal with symptoms while still child rearing. I've had dry eye and mouth that started in January of this year. They both wax and wane in intensity. When my eyes are bad my mouth is milder and vice versa. I'm currently in a milder  dry eye phase though my mouth has been more aggravated. I don't have a diagnosis yet. Will see a rheum in Oct. I do know that I have MGD. Mebobian gland disorder. Do you have that? I've used lots of drops to no avail and I had plugs which did nothing. It wasn't until I started using Retain drops that have lipids in them along warm compresses on my eye plus a massage on the lids after the compress that I started to feel a littl relief. It got better and better. At this current time I do t have to use drops more than once or twice a day. Now that can change tomorrow but so far I'm in more of a remission with the eyes.

Yes you do. I am lucky my older 2 are 12 and almost 14 so I have a little help.
My opthamologist never even mentioned MDG and I have no signs of blepharitis. Though in my desperate research I did run across it. I tear when I get an erosion pretty furiously or when I am moved to cry. Otherwise it seems as if I make no other kinds of tears than the flushing kind. Like it's completely dried up. Their golden children "plugs" and "Restasis" haven't worked...well they don't know what else to do, and aren't motivated since I feel as though they think I'm a hypochondriac nut when I mentioned Sjogren's at 37. The look he gave me... I briefly tried a compress once or twice but my bedroom is upstairs and washcloths cool down in less than 5 min. The only heating pad I have is meant for back pain and is enormous. I wonder if they make something smaller....

I'm glad you've gotten relief for your eyes. I know how miserable that can be.

[SunshineDaydream]

I briefly tried a compress once or twice but my bedroom is upstairs and washcloths cool down in less than 5 min. The only heating pad I have is meant for back pain and is enormous. I wonder if they make something smaller....

I'm glad you've gotten relief for your eyes. I know how miserable that can be.

I love my Thermalon dry eye compress which you can get from Amazon and some drugstores and maybe Target or Walmart. Just heat it in the microwave for 30 second and it stays warm much longer than a washcloth. You should wash it once in a while and it needs 24 hours to dry before using again. Some people avoid having to do this by putting a moist washcloth between their eyes and the compress which has the added benefit of providing even more moisture.

Here's a thread that mentions other eye compresses. https://sjogrensworld.org/index.php?topic=29761.msg312683#msg312683

[tiredndryinTN]

I briefly tried a compress once or twice but my bedroom is upstairs and washcloths cool down in less than 5 min. The only heating pad I have is meant for back pain and is enormous. I wonder if they make something smaller....

I'm glad you've gotten relief for your eyes. I know how miserable that can be.

I love my Thermalon dry eye compress which you can get from Amazon and some drugstores and maybe Target or Walmart. Just heat it in the microwave for 30 second and it stays warm much longer than a washcloth. You should wash it once in a while and it needs 24 hours to dry before using again. Some people avoid having to do this by putting a moist washcloth between their eyes and the compress which has the added benefit of providing even more moisture.

Here's a thread that mentions other eye compresses. https://sjogrensworld.org/index.php?topic=29761.msg312683#msg312683

Ooooooo! Thanks. I'm running by the drugstore Monday while running errands. They carry a similar compress!

[janny]

Wow. You do have a lot on your plate. My children are raised and gone and I didn't get this until they were both in college, thankfully. So, I can only imagine what your life must be like. My only suggestion for your eyes, although, since the plugs don't help you, I don't know if this would help either, is to get your ducts cauterized. The plugs weren't working very well for me, either, and kept falling out, Restasis did nothing, so I finally had them completely shut. Yes, it's a bit painful, but worth it in the end. You can do the bottoms, or the tops and the bottoms (best). When I first had mine done, I was a bit worried, as I was constantly tearing up and had to carry tissue all the time. Well, that went away after about a month and the cauterization has helped me so much. And as far as money goes, the cauterization cost me the same as getting a new set of plugs, so it actually saved me money in the long-run. I did Restasis, too, and it did absolutely nothing for me.

You might also think about getting a pair of goggles (prescription ones are available, too--that's what I have). I can't give you the name of the company, I have been told, but you can google it (7-E***). I would never wear them outside of the house, but when you are home, they are great. Your kids will laugh their heads off, too! I wear them for TV watching in the evening if I am still having a bad eye day (which doesn't happen nearly as often anymore) and my husband is so used to them, he doesn't even glance. Just some ideas...I hear you about the money. The non-prescription goggles are not much more than a bottle of supplements and the prescription ones cost about the same as a new pair of glasses. You can probably read more about them at dryeyes.com (I hope I'm allowed to post that).

Also, just to let you in on my experience with supplements, I do take quite a few just for my general health, but I have not found one that has helped my eyes or mouth. Believe me, I could buy a used car with all the money I have shelled out on different ones, too! I do find that sipping a thick smoothy (I make them in my Ninja) does help coat my mouth and take some of the ickiness away, as does chewing orange sugarless gum.