Showing posts with label Dry eye. Show all posts
Showing posts with label Dry eye. Show all posts

Saturday, July 18, 2026

Dry Eyes Part 8: Cequa

I had an eye appointment on April 17.  Restasis had plateaued for me, and my eyes were still dry with a foreign body sensation in them.  I was prescribed Cequa.

The prescription was sent to Phil RX, which ran it through insurance.  Insurance rejected the prescription.  I assumed that I would have to remain on Restasis, which was better than nothing.  I was unaware that my doctor was still going back and forth with insurance.

Meanwhile, Phil RX offered me a one-month supply (60 vials) of Cequa at a cost of $89.  I knew that I could stretch the supply to last for three or four months.  I decided to pay for a one-month supply.

Sometime after the Cequa was mailed to me, my prescription was changed to Vevye and was immediately filled by CVS.  I did not expect that.  Vevye cost me $90 for a three-month supply.  

The Cequa arrived on April 30, and I started using it.  Cequa burns less than Restasis, and at first, it was more pleasant to use.  Sometime during the first week of use, I had a brief shooting pain in my right eye.  I also had intermittent pain from the inner corner of my right eye.  Within a couple days, my eyes became more sensitive and irritated.  By May 5, I had a near constant foreign body sensation in both eyes.  

It was around May 13 that I realized that I had a runny nose that was caused by Cequa.  It had started soon after beginning Cequa.

I received the Vevye prescription on May 16.  By that point, I was miserable on Cequa and wanted to switch immediately to Vevye.  I knew that the better decision was to stick with Cequa, since I had read that Cequa requires a minimum of 30 days for it to work.  

I looked into how Cequa works, and I learned that it penetrates further into the eye than Restasis.  Cequa initially irritates the eye due to the deep penetration that then wears off as Cequa heals the eye.  I decided to continue Cequa for at least two more weeks to give it a fair chance.

On May 26, I had sudden improvement in my eyes.  I felt like my eyes were still somewhat worse than they were when I got punctal plugs (February 2025) and then had to get them removed due to excessive irritation (April 2025).  I have been trying to get back to the lower level of discomfort I had before the punctal plug debacle.  In late May, I mostly wasn't feeling the foreign body sensation, just the dryness. 

On May 28, it seemed that the foreign body sensation was gone.  My eyes felt more moist than they had in quite a long time.  I still had a feeling of dryness during parts of the day, but it was much improved.  By evening, my eyes began to feel dry.

On May 31, I felt less discomfort than I had in a long time.

On June 12, I started instilling the Cequa in both eyes immediately upon waking instead of using another eye drop first.  This did increase the burning sensation, but I knew that it would also penetrate the eye better.

On June 21, I noticed that I wasn't needing to use eye drops nearly as often.  This continued into July.  

Even though I would have liked to have used all of my Cequa to see what the trajectory would be, I also needed to give Vevye a try.  My next appointment is in October, so I need to know how Vevye works in comparison to Cequa.  My experience with Cequa up to July 11 was promising.  I just don't know if Cequa is the one, or if Vevye will be the one.  I do know that Restasis was not strong enough for me and that I do need on at least Cequa or Vevye.

On July 11, I switched to Vevye.  My current plan is to use all three vials of Vevye.  Once they are used, I will switch back to Cequa in the weeks before my October appointment.  By October, I should have a good idea how the two brands compare.

Vevye is a subject for another post, but my first week of use shows that it seems about the same as Cequa.  Both eye drops are better than Restasis, but I will have to see which one is better for me.

Thursday, April 23, 2026

Bad Reaction to Evoxac—Worsened Dry Eye and Decreased Thyroid Levels

My overall dryness has been worse since I had Covid for the second time in December 2024.  Early last year, I was prescribed pilocarpine and had a terrible allergic reaction.  

When I had a rheumatology appointment in October, I requested to try something other than pilocarpine.  I was prescribed Evoxac.  I was excited, since I've heard that it's great.

Evoxac definitely helped the dryness in my mouth.  The problem was that it made my dry eyes worse and caused me to have blurry vision in the evening.  I have had problems with my eyes since early 2025.  I had seen some improvement in the early fall, and Evoxac pretty much wrecked my eyes again.

I have always struggled with my electrolyte levels.  Two different blood pressure medications failed last year because they either dangerously lowered my electrolytes or threw off my levels.  I simply cannot get my blood sodium level above the lower boundary of the normal range.  One blood pressure medication caused my blood sodium level to fall close to a level that would have required hospitalization.

I believe Evoxac impacted my electrolytes.  I've noticed that I get insomnia whenever my electrolytes are off, and I did get insomnia soon after starting Evoxac.

On top of all the other side effects, I am pretty sure that Evoxac impacted my thyroid levels.  I can't have that.

I searched thoroughly online for confirmation that I wasn't the only person who's ever had these reactions to Evoxac.  It seems to be a miracle drug for just about everyone.  I created this blog because my condition just doesn't follow the same pattern as everyone else.  It's baffling.

I scoured the internet for information to substantiate what I believed was happening to me, and I found just about nothing.  This has happened so many times...

I finally turned to AI to see if I could get any confirmation.  Here, I include excerpts from some of my chats with Chat GPT.  These chats occurred over around a two-week-long period, as I tried to figure out why I was having so much trouble with a drug that helps so many people.

I would like for you to search for any adverse thyroid impacts caused by Evoxac.  I would also like you to search online for any anecdotal reports of thyroid levels that could be tied to Evoxac.

I could not find credible clinical case reports, label warnings, or pharmacovigilance signals that link Evoxac (cevimeline) to causing thyroid dysfunction or to interfering with levothyroxine absorption.

Are there any reports of Evoxac making the eyes dry or making them burn?

Yes—there are reports and side-effect listings showing that Evoxac (generic Cevimeline) can cause dry or burning eyes, or other ocular symptoms, though the data suggest these are less common compared to the beneficial effect of increased tears.

ChatGPT also stated:

While the original intent of the drug is to increase secretions (including for eyes) in conditions like Sjögren's syndrome (which cause dry eyes and dry mouth), the side-effect listings show that in some people, the effect may be paradoxical (or perhaps related to other ocular irritation) resulting in "dry, burning, itching" eyes.

Naturally, I would be one of those people.

I'm wondering if—since Evoxac helps the body secrete more moisture—that going off it could impact electrolyte levels and then as a result cause symptoms like a temporary headache.

Evoxac (cevimeline) does alter fluid balance slightly by stimulating glands throughout the body.

ChatGPT also said:

There's no evidence in studies or adverse event databases that stopping Evoxac causes measurable electrolyte disturbances (like hyponatremia or hypokalemia).

Huh.  That's what it thinks.  It should be noted that I didn't think much of ChatGPT's responses.  AI is unreliable, and ChatGPT acts just like a gaslighting doctor who doesn't believe that a patient is having certain side effects.  It was a few days after this exchange that I decided to corner it.

Evoxac is a cholinergic agonist.  What about this?  See link.

https://www.sciencedirect.com/science/article/abs/pii/0196978185901573


The link I gave ChatGPT goes to "Cholinergic and VIPergic effects on thyroid hormone secretion in the mouse."  The study concludes "that basal thyroid hormone secretion is inhibited by both cholinergic activation and blockade."  Since Evoxac is cholinergic, I felt I had my smoking gun.

ChatGPT, behaving in an incredibly dense fashion, continued its spiel about electrolytes, completely ignoring that the link is to a page about thyroid function being impacted by cholinergic agonists.  I continued in my quest to pin down ChatGPT.

I am referring to this excerpt:

"It is concluded that basal thyroid hormone secretion is inhibited by both cholinergic activation and blockade.  Furthermore, TSH-induced thyroid hormone secretion is more sensitive to inhibition with cholinergic stimulation than is VIP-induced thyroid hormone secretion."

And it seems like Evoxac can impact thyroid levels in some fashion.   Isn't that what this means?


Come on, ChatGPT, you can do it...

  • Both stimulating and blocking cholinergic receptors can reduce baseline thyroid hormone release (T3/T4).
  • When thyroid cells are stimulated by TSH (the pituitary signal to make thyroid hormones), adding cholinergic activation further inhibits that secretion—meaning acetylcholine-like drugs (such as muscarinic agonists) could dampen thyroid output.
  • The inhibition didn’t apply equally to all hormonal stimuli: thyroid stimulation via VIP (vasoactive intestinal peptide) was less affected than TSH.

So yes—mechanistically, cholinergic stimulation can suppress thyroid hormone release under some conditions.

ChatGPT added:

  • In theory, Evoxac could exert a mild inhibitory effect on thyroid hormone secretion, at least transiently or in sensitive individuals.
  • That’s not necessarily the same as causing hypothyroidism—but if you already have borderline thyroid function or are on levothyroxine, this kind of interference could slightly alter your TSH–T4 feedback balance.

    Precisely.  I quit Evoxac five days ago because it messed up the fluid balance in my body.  My eyes became much more dry with Evoxac.  They are now getting better.  Additionally, my thyroid due to Hashimoto's is extremely sensitive to any medication changes of any kind.  Since there is evidence that Evoxac could impact thyroid levels, I believe that happened to me during the two weeks that I took Evoxac.  I have mild symptoms of thyroid imbalance.   It will take my body a couple weeks to return to baseline.

    As I recall, it took around six weeks for my eyes to recover from the Evoxac.  As far as my thyroid levels, I then caught a horrible virus and have still not recovered my thyroid levels as of late April 2026.  But I digress.  That debacle will be addressed in another post.

    Anyway, I figured that I had one-upped ChatGPT with my final prompts.  Evoxac was terrible for my body, and I never want to try it again.  It really did help with dry mouth, and I noticed how my mouth was more dry as the medication wore off.  The benefit was not worth the negative symptoms.  I will just continue dealing with my dryness, hoping that one of the new Sjögren's drugs is approved in the next year.  With my luck, I'll be allergic to it.  Still, I can hope.
  • Tuesday, July 29, 2025

    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:

    ------------------------------------------------------

    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.

    ------------------------------------------------------

    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:

    ------------------------------------------------------

    📊 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.


    💡 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.


    ⚠️ 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.

    ------------------------------------------------------

    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.

    ....................................................................................


    July 16, 2026 update:  I used Restasis from early July 2025 until April 30, 2026.  Restasis significantly improved my eyes by the middle of August 2025.  I then had more stress, which worsened my eyes.  I also had a negative reaction to Evoxac in October (see link), which also worsened my eyes.  My eyes improved somewhat, but the dry winter air negatively impacted them.  

    All told, I had the Restasis plateau that I've read about.  It worked surprisingly fast for me, much more so than what happens with other people.  But like other people, I plateaued within months, and it did not improve.  

    As of late April 2026, my eyes were better than they were after the punctal plugs damaged them but no better than they were in the time right before I got punctal plugs in February 2025.  Restasis calmed down the damage from the punctal plugs but otherwise did not improve my dry eye condition.

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    Wednesday, July 23, 2025

    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.

    Monday, July 21, 2025

    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.

    Thursday, July 17, 2025

    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 tiredextremely sofor 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.

    Tuesday, July 15, 2025

    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 troublethat 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.

    Sunday, July 13, 2025

    Dry Eyes Part 1: The Punctal Plug Debacle

    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.

    ....................................................................

    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.

    Tuesday, June 17, 2025

    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.

    April 21, 2026 update:  I answered the questionnaire again, and I scored 51.2.  My ophthalmologist has now referred me to a dry eye doctor for my next appointment.