Dry Eyes Part 7: Restasis

Insurance companies really don't like paying for prescription eye drops.  They insist that the over-the-counter garbage is sufficient.  Most of the over-the-counter eye drops irritate my eyes.  The few that don't irritate my eyes aren't effective at helping the situation.

On July 2, I was finally prescribed Restasis.  I had to endure torture from late February until the beginning of July simply because my insurance uses step-therapy.  Once I had two failed attempts (punctal plugs and serum tears) to help my dry eyes, I was approved for prescription eye drops.  That should have happened in February.

I was told that Restasis would burn my eyes for a short time each time I used it.  I was also told that it would take several months to see results.  That is why the prescription eye drops should have been approved in February.

The first thing I did when I got home was to check online reviews of Restasis.  They weren't good.  Many people complained about how much Restasis burned their eyes.  Restasis helped some people... eventually.  Other people said that it never helped.

Since I had had six bad reactions to medication and treatments since January (hydroxychloroquine, pilocarpine, chlorthalidone, lisinopril, punctal plugs, and losartan), I was afraid of the Restasis. 

I mean... I was genuinely scared.  My eyes had been so horrible that I didn't want to use something that would make them burn even more!

I have been using ChatGPT this year as I have sought answers to my eye problem.  I am wary of ChatGPT.  The silly thing complements me all the time because I have such great ideas!  Sometimes I tell it the real situation, and other times I query in a general sense to prevent it from pandering to me.

I had already told it about Sjӧgren's, Hashimoto's, Covid, and what treatments had already been tried. 

I first asked, "How does Restasis work?"  It told me a bunch of stuff, including that it doesn't start working immediately.

I wrote, "I'm just afraid to start taking it because of how irritated my eyes have been for the last five months."

Among other things, ChatGPT told me this:

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Restasis works best in people with inflammation-related dry eye—which includes:

• Autoimmune disease-related dry eye (like from Sjogren’s),

• Neuropathic inflammation post-viral (like post-COVID),

• And possibly ocular surface nerve hypersensitivity where inflammation is contributing.

It may actually help reduce the irritation long-term, but only after that initial difficult period.

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I verified through an online search that Restasis is prescribed for inflammation, so ChatGPT's response seems reasonable.

I then asked, "How long does the sensitive phase last?  How long do the drops sting the eye each time they are used?"

ChatGPT replied that the sensitive phase can last for 3 to 12 months and that the stinging is short-lived.  It also gave me some advice like to refrigerate Restasis and to use serum tears 15 minutes before Restasis.  

I picked up the Restasis on July 3.  My eyes were feeling overall pretty good that day, so I thought that I'd wait to try the eye drops.  I was quite fearful of trying Restasis. 

On July 4, I woke up and quickly determined that I wasn't going to have a very good day with my eyes.  I decided that I had nothing to lose.

The Restasis burned a little bit, but nothing like what people mention online.  Within an hour, I felt like my eyes were less irritated than they had been in... months.  I was perplexed, since Restasis is supposed to take months to work.  I considered that I might have been experiencing a placebo effect, but I quite frankly expected the Restasis to make my eyes worse.  I wasn't expecting sudden improvement, so I didn't think that I was manifesting a positive reaction.

Really, I was dumbfounded.

I searched online and found just a couple examples of people saying that Restasis helped immediately.  I decided to ask ChatGPT.  I didn't tell ChatGPT that I had already tried Restasis so that I wouldn't influence how it answered.  

I asked, "I understand that it takes at least two months for Restasis to help.  I saw a comment online where someone said that Restasis helped them immediately.  How often does that happen?"

This is what it told me:

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📊 How common is early relief from Restasis?

• In clinical studies and post-marketing reports, early relief (within days to 1 week) is uncommon, but not unheard of.

• Based on observational data and ophthalmology feedback:

  • Only about 5–10% of patients report early noticeable improvement in symptoms.

  • The majority notice changes between 1 and 3 months.

  • A subset (20–30%) see no benefit at all, especially if inflammation isn't the main driver.

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💡 Why do some people feel better so quickly?

A few possibilities:

1. Inflammation was the primary cause, and their ocular surface responded rapidly to even low-dose immunomodulation.

2. Placebo effect + supportive treatments (e.g., artificial tears, cold storage, serum tears) created a synergistic improvement.

3. The Restasis may have reduced nerve irritation quickly by calming immune cells that were triggering sensory nerve endings—especially in people with milder SFN-related inflammation.

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⚠️ But it's important to note:

• Most people with chronic or autoimmune-related dry eye need to wait at least 6–12 weeks to feel confident it’s working.

• Doctors usually recommend sticking with it for at least 90 days before deciding if it’s effective.

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I had already decided that my eye problem is inflammatory, at least the part since February.  There's also my aqueous deficiency from Sjӧgren's as well, but the rapid deterioration in my eyes was undoubtedly caused by the punctal plugs, other bad reactions, and likely Covid.  It seems logical that the Restasis could help me on a faster timeline because it would calm that inflammation.

By one week after starting Restasis, I felt that most of the damage caused by the punctal plugs had been reversed.  I still had periodic burning, which was a symptom that started with losartan, and my eyes were still quite dry.  After only one week of using Restasis, it was great that my eyes were mostly back to what they were before I got the punctal plugs.

I am now one month into Restasis.  My eyes are burning very little except for the burning I feel in the hour or so after I use Restasis each morning and evening.  I don't mind the burning as it feels like a therapeutic burning to me.  It's a mild burning that I rather like because it makes my eyes moist.  It makes me feel like the Restasis is doing good things to my eyes.

I look forward to using the Restasis each morning and evening.

My eyes are still quite dry and are still noticeably worse than before I had Covid in December.  The summer heat is really drying my eyes out.  I suspect that my electrolytes are still off from losartan.  It's going to take time, but I feel like the Restasis will gradually make my eyes better and better.

Also, I notice that I'm forgetting to use the hot compress on my eyes most days.  I'm not using eye drops quite as much, either.  My eyes are still dry, but they are slowly improving.

Dry Eyes Part 6: Losartan, Flaxseed Oil, and Electrolytes

My eyes continued to be a problem, despite all of my futile efforts.  I also had a very annoying new symptom.  

In April, my eyes began burning, and I didn't know why.  Obviously, it was part of the problem, but why had they started burning after the punctal plugs were removed?

In May, the burning got worse.  I have been on thyroid medication since July 2014.  In May, my thyroid medication began making my eyes burn.  The burning would commence in the one to two hours after I took the thyroid medication and continued for at least a couple hours.  It was awful.

I knew that the problem wasn't the thyroid medication.  To clarify... the thyroid medication was undoubtedly causing the burning, but something else in my body had changed and was thereby causing the thyroid medication to do that.  I was pretty sure that the sodium in the thyroid medication was the problem.  It was like the sodium was hitting my eyes and making them burn.  My eyes had also started burning after I ate salty food.  That had never happened before.  

I had wondered about losartan because my eyes began burning within a couple weeks of starting losartan.  I finally realized that I needed to quit taking losartan to see if that was the problem.  I quit taking losartan on May 30.  I felt like my eyes improved some, but I wasn't sure if the losartan was the problem or not.

My appointment with my primary care physician was on June 5.  I told him that I had quit the losartan, that my eyes might or might not be better, and that I wanted to stay off of it for at least another couple weeks.  Additionally, my blood pressure wasn't spiking yet, and I would continue to monitor it.  He agreed.

My lab tests showed that my blood sodium had gone down some, and my blood potassium was on the high side.  Both were due to the losartan.

The eye burning caused by my thyroid medication gradually lessened.  Overall, my eyes began burning less.

By the middle of June, I thought I was improving, then I got worse again.  Why.....?

It was right at the end of June when I realized that I had run out of flaxseed oil around June 10.  I want to quit taking unnecessary supplements, so I chose not to continue.  I didn't think it was helping.

Since my eyes had worsened again, I concluded that it probably had helped.  I purchased more flaxseed oil and resumed taking it.  My eyes improved somewhat.  I concluded that I should continue flaxseed oil.

My eye appointment was on July 2.  I told my ophthalmologist that I was still worse than before I got punctal plugs, although I had improved somewhat since the plugs were removed.  

Back on February 26, my doctor said that my eyes had "some dryness."  This time, he said that they weren't that dry.  

I had been thinking for around a month that my eyes were inflamed from my December 16 Covid infection, and that the punctal plugs greatly aggravated the eye inflammation.  It didn't surprise me that my eyes weren't that dry overall.  But they sure have bothered me!

I was prescribed Restasis eye drops to use in addition to the serum tears.

Dry Eyes Part 5: Fish Oil Supplements

Once I quit using ointments with lanolin, my eyes seemed better, although I continued to struggle.

My Sjӧgren's has probably worsened, but I'm a bit perplexed.  My mouth dryness has been better, and I no longer get palpitations after I eat.

I continued to search online for remedies.  In my first post about my eyes, I wrote:

What I learned this weekend is that I need 2000mg to 4000mg combined of EPA and DHA.  The amount varies depending upon who is giving the advice, which is of course the problem with online advice.  It seems that people with dry eye need around 3000mg combined of EPA and DHA.  I've heard anywhere from 2000mg to 4000mg for Sjӧgren's.

In early June, I read more about omega-3 oils.  I read that people with rheumatoid arthritis (which I don't have) are recommended to take 4000mg to 5000mg combined of EPA and DHA.  I also saw some reports that people with Sjӧgren's could benefit from that same intake.

The quality of the fish oil matters, and the cheaper brands should be avoided.  Fish oil needs to be in triglyceride form, which is less likely to go rancid.  It should also be packaged in an opaque container so that it isn't exposed to light. An opaque container helps prevent the fish oil from going rancid.  Apparently, a lot of fish oil sold commercially is rancid.  

Even though I'd rather not have to pay for more expensive supplements, I also need for them to help me.  Taking rancid oil won't help.  I have read online that rancid fish oil can irritate the gut and promote inflammation.  My goal with fish oil is to reduce inflammation, not promote it.

I have taken Qunol fish oil for a number of years, and I feel like Qunol is a good brand.  However, I notice that the Qunol has an extremely strong lemon odor as compared to the two more expensive brands that I have tried.  This makes me suspicious about what they are covering with the lemon odor.  It's just too strong.  I am taking extra Qunol to use it up, and then I will take only the more expensive higher quality fish oil.

I switched to Sports Research Alaskan Omega-3 Fish Oil since it is slightly less expensive than Nordic Naturals.  Sports Research is said to be a high-quality brand.

I am also keeping my fish oil refrigerated to keep it from  going rancid.  If I'm going to take expensive fish oil, then I want to make sure that it is good quality.

Dry Eyes Part 4: Nighttime Eye Ointment

I purchased several brands of nighttime eye ointments back in February to see which one I liked best.  I had been using Retaine PM, and I thought it was quite good.

The other brands I tried were Systane, Soothe, and Refresh.  I wasn't that happy with any of them, but they seemed decent.

I used Refresh consistently for a few weeks, and I decided I would not purchase it again.  I feel like the tube design makes it too hard to get at the ointment as the amount remaining decreases.

Around April 18-20, I used Systane and noticed that my eyes felt worse the next day.  This gave me pause.  Could this have something to do with the odd fluctuation in symptoms?

I checked reviews, which are overall quite glowing.  I did find one where someone said that Systane irritated their eyes.  Someone else said that Systane made their eyes itch.  I wondered.

I switched to Soothe for a few days, and my eyes were somewhat better.  I wanted to be sure, so I decided to use Systane again.  On the night of April 23, I put Systane in my eyes and then got into bed.  Around five minutes later, both eyes were itching.  I was a bit horrified.  

I immediately got up and used eye drops to flush out my eyes.  At that point, I knew that Systane was a problem, but not necessarily the problem.

I checked the ingredient list.  Click on the image in order to see it clearly.

I saw Liquid Lanolin (3%).  That answered two questions in one.  My lips have been a problem for many years.  I cannot use any lip balms.  All of them burn my lips.  Around five years ago, I settled on Aquaphor.  It was great!  Until it wasn't...  One morning a few years ago, I woke up looking like a clown.  My lips were on fire, and I had a rash all around them.  I had to quit the Aquaphor and switch to just Vaseline on my lips.

The only thing in the Aquaphor that could have possibly caused a reaction was lanolin.  However, I read online at that time that very few people have a lanolin allergy.  Still, it seemed like I might.

The itchy feeling five minutes after putting Systane in my eyes was unmistakable.  It's now apparent to me that I do have a lanolin allergy.  That was my Aquaphor problem, and it's my Systane eye ointment problem as well.

I checked my other eye ointments.  Refresh has "lanolin alcohols" in it.  Really?  That would explain why I didn't think the Refresh was that great.

Soothe and Retaine PM don't have lanolin in them.  That's good to know.  I will stick to those two brands and will avoid the others.

After I figured this out, I put Retaine PM in my eyes and went back to bed.  I noticed the next day that my eyes felt much better.  I should never have purchased any other brands.  The first one I tried, Retaine PM, is the best one for me.

This didn't solve the entire problem, but avoiding lanolin in the eyes was a positive step towards improving my dry eye.

Dry Eyes Part 3: Serum Tears and Possible Anemia

On April 1, the skin around my right eye became swollen, and my eye hurt.  I decided that the punctal plugs needed to be removed.  They were removed on April 4.  My eyes immediately felt much better.  Oddly though, my discomfort began to return.  Some days were fine, and others not.  I couldn't understand it.  I realize that happens, but I felt like there was an odd pattern to it like something was causing it.  I couldn't put my finger on exactly what was causing it.  [I mentioned in a previous post that this is important.  I still couldn't figure it out.]

Meanwhile, I was prescribed serum tears.  I went to the lab on April 9 to have my blood drawn.  I ended up feeling quite tired—extremely so—for several days.  I knew that my tiredness was due to the blood loss.

I am borderline anemic and have been for many years.  The blood loss worsened my condition to where I really felt it.  While the serum tears were quite soothing, I continued to have trouble.  I read that serum tears can take several weeks before helping.

I continued to feel so very tired that I looked into the symptoms of anemia.  I discovered that anemia can cause dry eyes.  Oh!

I decided to start taking an iron supplement each day to see if that would help.  My tiredness improved.  I didn't notice anything different with my eyes, other than the usual variations, but I also knew that it could take some time.

My next regular doctor's appointment was in early June, and I felt like if I stuck with the iron until then, I could then see whether it helped. 

Also, I had a lot of discharge from my left eye.  It was most significant in the one week after the punctal plugs were removed.  Those things messed up my eyes.  On the day that I got the serum tears made, I had yellow mucus pooling in the inner corner of my eye and running out.  It was a bit disturbing.

Serum tears help with inflammation, so that I knew that I had the treatment I needed for the irritation.

On April 13 and 14, my eyes felt much better, although still dry.  I felt hopeful.  On April 15, they worsened considerably and continued to be quite bad on April 16 and 17.  I still felt like there was an odd pattern with something causing the change in symptoms.  I still couldn't figure it out.

I noticed that my eyelids were becoming more irritated and a little swollen near my meibomian glands.  My eyes were more inflamed, and I couldn't pinpoint why. 

I tried the eyelid wipes again, and it seemed that my eyes became worse.  I continued to feel that the eyelid wipes were an allergen.

By this point, I was quite frustrated.

Dry Eyes Part 2: Blood Pressure Medications

In late March, I began considering that blood pressure medications could be part of the problem.

I will start with the backstory, since it is relevant. 

I was on lisinopril paired with hydrochlorothiazide for around 8 years from around 2006 to July 2014.  I was fine on it at first, but towards the end, I coughed constantly.  The coughing impacted my quality of life, and I was switched to Bystolic.  Over the years, my blood pressure gradually increased, so I needed to be put on a secondary medication.

In November, it was suggested that we try chlorthalidone, which is a diuretic.  I was hesitant, because of my problem with coughing before and how excessively dry I am.  I agreed to try it, and I didn't cough, so I thought I was okay.  Unexpectedly, routine labs in early February showed that my electrolytes were dangerously low.  I was pulled off the diuretic.

Lisinopril without a diuretic was suggested.  I agreed, since the medication would not be paired with a diuretic.  At first, I thought I was fine, and I didn't realize anything was amiss.  In fact, I ignored the obvious due to my preoccupation with my eye trouble.

I detailed in my previous post my attempt to fix my eye trouble that began in late February.  I thought I had figured it out on March 23, but I worsened again.  It was on the morning of March 26—and not in relation to anything with my eye trouble—that I suddenly thought about how much I had been coughing.

I realized that I was taking lisinopril and that I was coughing uncontrollably.  The coughing was violent and caused loss of bodily functions.  Really awful coughing.  I was sure that it was worse than the coughing that I had previously while on lisinopril paired with hydrochlorothiazide.  I couldn't believe that I hadn't made the connection.  I had been so distracted by my eye condition that I hadn't realized that lisinopril was making me cough.

I now know that I cannot take lisinopril with or without a diuretic because of the coughing caused by it.  And to think it took me over a month to figure it out.

As soon as I realized that I was coughing too much, I typed up a message to my doctor explaining and requesting a change.  After I did that, I considered my eye situation.  Hmm...

I thought through the sequence of events.  I figured out that I took my first dose of lisinopril on February 17.  The coughing began around February 23, nearly one week later.  I believe the coughing worsened on February 24 and 25.  I know that the coughing became a problem early that week.

Once I worked that out, I came to a huge realization.  My eye appointment was on February 26, three days after I started coughing from the lisinopril.  I also recalled vaguely but without specifics that my eyes had worsened a little in the few days before my eye appointment.  They became dramatically worse immediately after my appointment.

It seemed that lisinopril could be what caused my eye trouble.  I would never have suspected that, since I previously took lisinopril for eight years with no eye trouble.

I quit taking the lisinopril as soon as I realized that it was the cause of my terrible cough.  I noticed that my eyes were immediately less dry.  I thought maybe I had figured it out, but no.  Once I started on losartan, my eyes became more dry again.

I did believe that the blood pressure medications were a part of the problem with my eyes, but I knew that something else was at play.  After all, I've been on blood pressure medication since around 2006 without the eye pain that just developed this year.

Sudden Eye Pain and Dryness Part 1

This is the first in a series of posts about my difficulty with dry and aching eyes this year.  I have spent countless hours searching for answers.  I have also spent a lot of money on various remedies, most of which did nothing.  At multiple points during my journey, I thought that I had found a solution.  In most cases, I was wrong.  I also discovered that some of the remedies caused my eyes to worsen.

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I have had dry eyes for around 20 years, but the situation worsened last year.  My eyes began to be uncomfortably dry late each day.  Still, as far as dry eyes go, my condition was quite minor.  I know that now based on how awful I've had it this year.

I was referred to an ophthalmologist after my Sjӧgren's appointment in January, mainly for testing connected to a new prescription for hydroxychloroquine.  I had an allergic reaction to the medication and quit taking it after just four days.  Nevertheless, I decided to keep my February 26 appointment since I was interested in anything that could help with dry eye.

My eyes were dilated during the exam.  I agreed to get punctal plugs to help with dryness, and numbing drops were used when the plugs were inserted.  My lower tear ducts were blocked so that fewer tears will drain from my eyes. 

Immediately after the appointment, my dry eye became much worse.  I'd say that my condition was easily 10 times worse.  I had noticeable discomfort and terribly dry eyes most of the time from February 26 into April.  This time period was horribly difficult as I searched for answers online. 

I learned that some people have a bad reaction to the dilation fluid and/or to numbing drops.  This is apparently uncommon, but I did find several discussions with people who suffered for months with dry eye caused by an eye exam. 

Long term eye trouble after dilation

Oddly, my eyes fluctuated during the time period from right after my eye exam into late March.  They would go back to nearly how they were before my appointment, and then suddenly, they would be awful again.  I couldn't make sense of it.  [This part is important, and I will mention it again in later posts.  It's important to consider all possibilities, even the ones that seem remote.] 

I was miserable, wondering if this is what the rest of my life would be like.

I was using preservative-free eye drops, which weren't helping at all.  I used an eye ointment at night.  I tried a warm compress.  I tried eyelid wipes.

I figured out quickly that eyelid wipes dry out my eyelids terribly.  Of course.  With Sjӧgren's syndrome, everything dries me out.  I can't use any kind of soap on my face, so I wasn't surprised that the eyelid wipes were a problem.  It was disappointing.

I quit using the eyelid wipes and didn't bother with the warm compress.

I increased my usage of the eye drops, since suggestions online indicated that liberal use of the eye drops would help after dry eye caused by an eye dilation.

I also read online that punctal plugs don't always work and that sometimes they cause inflammation in the eye.  I couldn't rule that out, either.  My next eye appointment was May 28.  I wanted to give the punctal plugs a fair chance before having them removed.  I wondered if I could make it to May 28 with the horrible discomfort. 

I kept searching online for anything that could help.

I read that warm compresses might make dry eye worse in some people.  The suggestion was to use a cold compress.  I used a washcloth moistened by cold water.  It did help, perhaps for half an hour.  That was better than what the eye drops were doing, since they only helped for a few minutes.

I felt like my eyes were getting worse and worse.  I continued searching online for answers.  I finally found some useful information on March 22.

First:

Success story!  My RECOVERY Guide

Here's a screen capture of what this person said didn't work.  Click on the image in order to see it clearly.

This is what stood out to me:

VARIOUS eye drops, including antibiotics, steroids, allergy and hydration drops.

Hydration eyedrops (preservative free) only got me addicted and dependent to the point I was using them every 5 minutes or I was going to go insane.  I stopped them altogether and saw massive improvement after some time.

Huh.  This resonated with me.  I found that I was using the eye drops more and more often with little relief.

I also noted that this person didn't feel that the warm compresses helped and also stated that the eyelid wipes irritated their skin.  Same here.

This is what they said helped:

 Most important:

ABSOLUTELY NO EYEDROPS.  NOTHING.  If you feel dry make yourself cry!

I decided to try to quit using eye drops.  It was counterintuitive, but the eye drops weren't helping, so I had nothing to lose.

I also found out some information about omega-3 fatty acids.  For years, I have been taking fish oil to counteract inflammation and dryness.  In the last year, I also began taking sea buckthorn oil, krill oil, and salmon oil.  My condition improved in various ways with each oil that I added.  

Sea buckthorn oil reduced the inflammation in my mouth, and I have been able to floss without bleeding and pain.

Salmon oil reduced the pain in my legs.  I can't point to anything specific, but I feel that when I added the krill oil that my symptoms overall improved slightly.

What I learned is that I need 2000mg to 4000mg combined of EPA and DHA.  The amount varies depending upon who is giving the advice, which is of course the problem with online advice.  It seems that people with dry eye need around 3000mg combined of EPA and DHA.  I've heard anywhere from 2000mg to 4000mg for Sjӧgren's.

I thought I was taking enough.  I checked my supplements and discovered that I was only taking around 1500mg combined of EPA and DHA.  I searched online and found a high potency fish oil. 

Nordic Naturals Ultimate Omega 2X has 2150mg combined of EPA and DHA.  I purchased it and took 3 soft gels beginning on Saturday.  With what I was already taking, 3 soft gels brought me up to over 4000mg combined of EPA and DHA.  

I mostly went off the eye drops on the morning of March 22.  I noticed that morning that my eyes seemed worse after using the eye drops.  I felt like by noon that my eyes were feeling a little better.  I took the Nordic Naturals Ultimate Omega 2X that afternoon after Amazon delivered it.  My eyes seemed even better after taking the supplement.

On March 23, my eyes were very dry when I woke up, but that's always the case.  I had also read another good piece of advice about eye drops.  Someone said to use them very sparingly and never use so much that it runs out of the eyes.  I had been flushing my eyes, and this person said that they had done that and disrupted their tear film.  On Sunday morning I used eye drops just once, a very small amount in each eye.  Nothing ran out of my eye.

That night, I placed one small drop in each eye.  I did the same on March 24 when I woke up.

I felt like my eyes had improved to the level of dryness that they had prior to my eye appointment.

However, my eyes were awful again by later in the day on March 24.  It seemed that I wasn't making any progress.

I found that my eyes were still bad on March 25, and my use of eye drops was increasing.  I was using them sparingly, but I had to use them at least once every hour or so.

Having to Work While Autoimmune

This was written on May 11.

By necessity, I have to be kind to myself.  In order to be kind to myself, I do things in such a way that they are easier for me.  As a result, what I do might also turn out to be easier for my students.  

My coworkers struggle to understand this, which causes me to have to endure some critical comments.

In one instance, I wasn't feeling well, but nobody knew.  That happens to me multiple days per week.  It's just how my life is.  Anyway, I was really not feeling that great on this one particular day, which was a Monday.  A number of students needed to make up a test.  I didn't feel up to messing with it.  I just didn't.

I told the students who needed to take the test that they could take it that day or the next.  I didn't care.  Of course, this resulted in them choosing the next day, which suited me fine.

My coworker stated later in the class period that I was being too easy on my students.  She didn't know the whole story.

I was fatigued both mentally and physically that day.  As I recall, the mental fatigue and brain fog was more significant on that occasion.  I just didn't feel like getting out the tests, making sure that the students didn't have their phones, and having to keep an eye on them while also working with the students who were not testing.  

Yes, I was being easy... on myself.  I knew that I needed to take it easy.  I didn't need the criticism.

Very recently, another coworker was nitpicking on how we were going to do a certain thing.  I said that I didn't care.  I explained further, saying that the situation with my dry eyes and eye irritation had been so bad that I was near the breaking point.  

They asked, "Are you using eye drops?"

Sigh.  I answered politely and said that I was and that I was also using several other remedies as well.  I needed to continue to treat my condition, and I needed less stress. 

Seriously?  Am I using eye drops?  The obliviousness is incredible.  Of course I'm using eye drops!!!

I don't talk much about my autoimmunity, but I do own the condition.  It's important that others know that I'm dealing with a chronic illness.  However, none of them truly get it.  Am I using eye drops?  Ugh.

Yeah, I use eye drops and tons of supplements, ointments, and lotions for all of my various physical ailments.  Sigh.  I spend lots of money on over-the-counter remedies.  What choice do I have?  Such is autoimmunity.

I also do things in such a way that I can deal with students on 504s and IEPs easier than I otherwise would.  Meaning, I go beyond what is required on the 504 or IEP because it makes my job a little easier.  Needless to say, I take some flak for that as well. 

Math teachers are notorious for being difficult and unyielding.  I don't think like a math teacher.  I'm the unicorn in the math department.  I think like an English teacher, yet I teach math.

The teachers in charge of the special needs kids do tend to place them in my classes because I'm not like the rest of the department.  I do bend the rules, and they appreciate it.  The other math teachers, not so much.

The Ocular Surface Disease Index (OSDI)

I just found the Ocular Surface Disease Index (OSDI) which is a great way to determine how bad your dry eye is.  

The questionnaire is available from many sites.  Follow this link for one example.

This is what it looks like.  Click/tap on the images in order to view them at a higher resolution.

I answered the questions and found that currently I am at 41.7, which means that I have moderate dry eye.  I am better than I was a month ago, but I keep fluctuating between better and worse.

I have had several bad reactions to over-the-counter eye treatments plus problems with blood pressure medications.  I have a number of posts partially written about this entire saga.  I plan to publish them at some point, but I've been waiting for a final resolution.  

As of today, I think my Covid infection back in December worsened the dry eye that I already had from Sjögren's.  Bad reactions to treatments made it worse, and I continue to try to get my eyes to settle down.

Bad Reaction to Hydroxychloroquine and Pilocarpine

At my first appointment with rheumatology in early January, I was prescribed two medications for Sjögren's syndrome.  I was prescribed hydroxychloroquine to help with inflammation.  I was also prescribed pilocarpine to help with dry mouth. 

I tried the pilocarpine first, so that I would know if any side effects were caused by it.  I wasn't expecting anything awful to happen.  

1/10/2025: I took three pilocarpine at intervals throughout the day as directed.  They didn't help at all.

1/11/2025:  I again took three pilocarpine with no improvement in moisture level.  Rashes developed and quickly worsened on my upper left arm, stomach, chest, upper back and neck, one leg, right arm, and lower scalp.  The rash consisted of small pinpoint red bumps that itched terribly.

I quit taking the pilocarpine as soon as the rash began.

1/12/2025: I took one dose apiece of four name-brand antihistamines, scattered throughout the day.  The rash worsened.  

1/12/2025: I decided to go ahead and try the hydroxychloroquine since I figured it might calm my body down.  Hydroxychloroquine is an immune suppressant.  I took one capsule, which was half of the prescribed dose.

1/13/2025:  The itching was not as bad.  I took four doses of antihistamines and one capsule of hydroxychloroquine.

1/14/2025:  The itching improved some more.  I took five doses of antihistamines.  I took the third dose of hydroxychloroquine.

1/15/2025:  I took the fourth dose of hydroxychloroquine first thing in the morning and more antihistamines.  My rash and itching continued to improve until afternoon and then exploded again.  Between 4 PM and 5 PM that afternoon, large rashes popped up all over my stomach, chest, entire back, upper hips, upper thighs, neck, and scalp.  The edges of my face began itching, and I had intense itching over most of my body.

This rash was different from the pilopcarpine rash.  The pilocarpine rash consisted of small individual bumps scattered all over my body. The hydroxychloroquine rash consisted of large solid areas of rash that itched even worse than the pilocarpine rash.  It was awful.

I quit taking the hydroxychloroquine immediately.

I cannot overstate how horrific the hydroxychloroquine rash was.  On two different days, I came very close to going to urgent care or to the emergency room.  The itching was unbearable.  I even scratched so hard a couple times that I made myself bleed a little.  After around a week, the rash very slowly began to subside.

To be clear, I had no swelling of the throat.  It was not life-threatening, just unbearable itching.  

All told, the rash lasted for approximately one month as it gradually improved.  I had some temporary scarring that lasted a bit longer.  

As a result of this debacle, I am taking no medication for Sjӧgren's syndrome.  I don't want to be on any of the DMARDs (Disease-Modifying Antirheumatic Drugs), since they all sound dreadful.  

My main problems are dryness of the mouth and eyes.  I do not yet have any organ involvement or neuropathy. 

I have been upping my omega-3 intake to try to improve my dryness.