Sometimes no news is good news. No inflammation, no side effects, no splashy headlines. That’s how it’s been for me this year, finally. Moving into February of 2022, I was able to extend my eye appointments to 6 weeks, 10 weeks, and then 14 weeks apart. The neovascularization quieted down after over a year of regular Avastin injections. Since I had been going in weekly or biweekly for a few months in the winter, dealing with the bleb leak (see Diffusing the Bomb) it was odd(ly refreshing) not to be driving to Seattle all the time.
One of the few times during the summer that I caught myself thinking about my eyes was at the swimming pool. [Besides the two weeks when I was pretty sick with COVID (even with four vaccinations) and was a little afraid I was going to have to go off my medication (it didn’t happen)].
I swam a decent amount as a kid, and now my kids are enjoying lessons. I have two decent pairs of goggles that fit nicely, but I still hate to wear them. Maybe it’s because my vision isn’t great with them on. Maybe it’s because I’m not swimming laps, I’m up and down and bobbing around, getting splashed by kids, somehow fogging the goggles up.
I’d been avoiding researching just how bad pool water is for folks with eye disease because I didn’t really want to know. I finally did some “googling,” and what I read will give me more motivation to keep my goggles on…
Everyone knows not to go swimming after ocular surgery. I know not to go in after an injection and I didn’t go near the pool during my bleb leak.
In swimming pools, chlorine is used to reduce water-borne bacteria and viruses to prevent pathogens and diseases from spreading. Chlorine is a fairly decent sanitizer, but it doesn’t kill everything. Efficacy is also dependent on how much chlorine is added and how often.
Another thing that chlorine is good at is washing away your tear film. Tear film is made up of three layers and protects your eyes, among other things. Read Facts About Tears.
“When your eyes are submerged in chlorinated pool water, the tear film that usually acts as a defensive shield for your cornea is washed away. This means that your eyes are no longer protected from dirt or bacteria that are not entirely eliminated by the treated pool water. So, swimmers can be prone to eye infections“ (Dr. David WIlliams, OD, https://2020eyecareoh.com/does-chlorine-hurt-your-eyes/)
Conditions such as conjunctivitis are not fun in and of themselves but can cause serious complications for someone with uveitis. Anterior uveitis can be exacerbated by irritation from chlorine or even brought on by parasites, which would be more common in lakes or other water bodies (Water Related Ocular Diseases, Saudi J Ophthalmol., 2018)
Before swearing off swimming altogether, there are things you can do to reduce the impacts of chlorine and avoid infection.
Wear Goggles: Just when you thought the worst part of swimming was swimsuit shopping… finding the right pair of goggles can take a while, but they are the most impactful in terms of protecting your eyes. Goggles can cause a slight increase in interocular pressure, so if you’re in the danger zone (i.e. taking drops or medication to reduce pressure), you probably want to discuss this one with your doctor.
Rinse off after swimming: Make sure that if you don’t have time to shower thoroughly, you at least use clean water to rinse off your eyes and face.
Use Drops: Preservative-free drops are very helpful when combating dry eye and rinsing out anything that is causing irritation to the eye. Additionally, you could even talk to your doctor about using a drop like Ofloxacin (prescription antibacterial) sparingly if you swim a lot and are worried.
One Friday morning in early December, my uveitis specialist confirmed that the bleb in my right eye was leaking “briskly.” I knew it and hadn’t wanted to believe it. Earlier that week I had experienced what I can only describe as the same sensation as when my water broke at the end of pregnancy, but in my eye.. a burst one night that woke me. The deluge of tears didn’t come again but my eye felt less dry than usual, yet irritated.
I went home from that appointment and did what you’re not supposed to do. I “googled” bleb leak. One of the first articles that came up was called “A Ticking Time Bomb: How to Fix a Leaking Bleb” with subtitles such as “Danger, Danger” and a really gross picture of an infected eye. Wow, I thought, Merry Christmas to me! I closed my browser. I know better than to go down the “worst-case scenario” road. At least in broad daylight.
So, What in the world is a bleb? you might be asking.
Uveitis is inflammation of the eye. If the inflammation is in the middle or back of the eye, the most effective way to deal with it is a steroid injection or implant. While steroid injection slows or stops inflammation, it usually causes an increase in intraocular pressure. This side effect can damage the eye (the pressure can be too much for the optic nerve). There are multiple ways to reduce pressure (see Complications: high intraocular pressure / steroid-induced glaucoma). After drops and a shunt failed to reduce the pressure in my right eye, a trabeculectomy was performed six years ago.
A trabeculectomy is a procedure that lowers the pressure in the eye by removing a piece of the trabecular meshwork (tissue in your eye that allows aqueous humor (fluid) to drain, which gets blocked up causing pressure to rise). This removal allows for drainage but still in a controlled manner. The fluid drains through a piece of tissue stitched on the eye (like a trap door) to a bleb (small blister or reservoir) just under the eye surface (sclera).
The following Monday, my glaucoma specialist used the same term “briskly”. He placed a bandage contact lens in my eye to cover the bleb leak and help it repair. He gave me pressure-reducing drops to slow the leak and antibiotic drops to keep the eye from becoming infected.
The reason a bleb leak is a big deal?
There are two main issues (“danger, danger”):
Infection: a leak means there’s an opening in the eye. If fluid can get out, bacteria and other organisms can get in and cause infection such as blebitis, endophthalmitis, etc.
Hypotony: Normal eye pressure range is 12-22 mmHg. Anything below this is deemed “hypotony.” If you’re like me and have had pressure reducing surgeries, you may live in the hypotonous range. It only becomes an issue if it starts to cause problems, such as reshaping the eye due to pressure loss, known as shallow anterior chamber. (The front part of your eye, between the iris and the corner (see Anatomy of the Eye) is a liquid filled space called the anterior chamber.)
Back to the drama. That first night, with the bandage contact lens, I didn’t sleep more than 2 hours before I woke with severe burning and pulsating pain in my right eye. I couldn’t get it to stop. My husband found me sobbing in the bathroom sometime around 2:30 AM. All the articles I had found in the middle of the night (now zooming down “worst-case scenario” road at lightning speed) said that a bandage contact lens was supposed to make the eye less irritated, or maybe cause a little discomfort. I stopped crying and called the doctor’s office.
By 5am my husband and I were back in Seattle, this time at the Harborview Emergency Room (thankfully my parents came over to stay with my kids). The residents decided to try another contact size. No one could get it in my eye. Finally, another size down, my eye seemed to tolerate the new lens. My husband and I even tried to nap in the car to test it. We headed home but I ended up taking it out again in the middle of the night. I was so exhausted I needed to sleep.
The next day, my doctor told me I could take the contact out if needed and put it back in. That night, around 3:00 AM I took it out (I’d had contacts once upon a time, I was sure I could handle it). Let me just tell you: do NOT try this at home. The contact bandage lens was so large, it took my husband and me three tries with multiple attempts each time to get the thing back in. I didn’t take it out after that. I decided I would do what it took to make it to the next appointment.
Interspersed in these doctor’s visits, my older son turned 7, we celebrated Christmas and New Year’s Day. I began taking more fish oil, getting more omegas in my diet, drinking a ton of water, using lots of moisturizer, lubricating eye drops and gel, and a humidifier. My eye began to adjust to the lens and finally, I was able to sleep without waking up with pain every couple of hours.
About a month into the leak, my glaucoma specialist started seriously considering a second option. Autologous blood therapy, also known as autologous blood injection, is an in-office procedure during which he would take blood from my arm, and inject it into the bleb to stimulate healing. If that didn’t work, it would be the surgical repair of the bleb (the last resort). We decided to give my eye a few more weeks to heal since it’d had such a rough December.
During January my eye became so dry it was hard to focus on work some days. I took the dryness as a good sign. Less fluid meant that hopefully, the bleb was healing. When I went in to see my uveitis specialist on January 21st, the leak had healed! We took out the contact bandage lens but kept up with the drops until I could see the glaucoma specialist the following week to confirm. My right eye did not appreciate the constant drops and it was hard to trust that pressure-lowering drops were the right course of action when my pressure dropped to 2mmHg during one of the appointments in December. This is why you have to find a team of doctors in which you have the utmost faith.
I must say that now I am much more aware of the bleb! I’ve always been relatively careful around it; I know it’s there because it makes my eyelid uneven. Of course, one of the first questions I had asked back in December was: how do you think this happened? Will leaks be chronic now that it’s happened once? (i.e. how can I avoid this in the future)
The guess was that it was punctured, or just repeatedly scraped by, the eyelid holder that is often used when I receive my injections. Since I’ve been getting injections much more frequently the past two years, this makes sense.
The Monday following my final glaucoma appointment, I got another Yutiq injection to attempt to curb the inflammation that might be causing the persistent vascularization. I was nervous for this one like I haven’t been in a while. I think it was just eye-appointment overkill. We didn’t use the eyelid holder for the numbing injection and then my doctor had the current department resident hold my eyelid for the Yutiq injection instead of the holder…and a lot of numbing and a lot of holding very still. It wasn’t as bad as I’d worked it up in my head.
My right eye has been through so much at times I just think it’s done. A few of those first nights with the bandage contact in, I wondered if the remaining vision in my right eye was worth the pain and the constant disruption of my family’s life. But the leak healed and it really didn’t take that long; it just felt that way.
I’m writing all this to say, if you are “googling” bleb leak in the middle of the night and looking at all the disgusting photos, or even if your eye looks like one of those disgusting photos, it might get better. It might not. But it might. Find something you would miss seeing: your kids, the sunrise, your best friend’s smile, and keep going. With a big bandage contact lens and a little perseverance (or more), you might just diffuse the bomb.
I got vaccinated in the early spring. I didn’t write about it because up until that time, reading about anyone getting vaccinated was very “triggering” for me. I didn’t want anyone not eligible or unable to find a vaccination to read about me and experience that sense of anger, frustration and helplessness that I was feeling (am still feeling). As someone who doesn’t like to be a victim, this whole pandemic has been maddening. Being at the mercy of others doesn’t sit well with me.
Washington had opened up the phases in which folks over 65, some essential workers, then over 55 with 3 preexisting conditions (which I wrote about in my January post) could schedule vaccinations, but people on immunosuppressants due to medical conditions or disease treatment sat like sitting ducks. I waited my turn as I read reports of people not in phase getting shots. I am lucky enough to be able to work from home, so I knew I had it better than many. Post after post on Instagram showed happy faces with vaccine cards; people that were definitely not 55 with preexisting conditions. I heard from people who lied on their eligibility paperwork. I went into the pharmacy to pick up the one prescription I hadn’t turned in to mail order and stood in line behind people waiting for their vaccine. It was so close.. Yet so far away.
I became a “vaccine chaser” in my town, calling and asking every clinic and pharmacy to get on extras lists. Finally I found a small clinic that I’d never even heard of and got on their list. A staff person called me the next day and set up a time for my husband and me to come in, as someone had canceled that day. I got off the phone and cried with relief.
Even wearing a mask at his day camp, my four year old son got sick two weeks ago. My heart was in my stomach when I took him through the backdoor of his pediatrician’s office to get tested for COVID-19. I had an eye appointment that Friday and I had to know if I could go or not. We found out in less than 24 hours that the test was negative. I know it will happen again. He slept in my bed with a bad cold for three nights (if you’re a mom., you know) and all I got was a nasty sore throat. I was pretty darn proud of my immune system. But, I work hard at it (vitamins, water, sleep, exercise). I do all the right things; I have no choice if I want to keep my vision.
Studies have shown that those on immunosuppressants aren’t necessarily making the antibodies when they receive the vaccine. The CDC says that a large number of hospitalized “break through” cases are actually immunocompromised people who didn’t make antibodies or enough antibodies.
So, I got a third shot last week; my third Moderna vaccination. The guy at the counter asked me if I qualified in a tone that didn’t surprise me. Looks can be deceiving and uveitis certainly is never listed as a disease for which patient would be taking immunosuppressants. Have you had a liver transplant? Do you have cancer? No, but I take or have taken many of the same medications; dosage has depended on severity at the time.
The pharmacist who administered the vaccine, however, was great. We had a conversation about uveitis, the medication I’m taking (prednisone, CellCept, Humira) and that I’d discussed the booster with my doctor.
It’s not even necessarily about me getting sick now though; with three vaccines in me, I’m fairly certain I wouldn’t get critically ill from COVID and have a much better chance of being able to stay on my medication. What worries me is being contagious and not being able to attend my appointment every 6 weeks at which my doctor gives me an Avastin injection to keep my CNV at bay.
If you’re like me, you don’t have the luxury of debating what it is that is being injected into your body at all times. And unless you grow your own food and drink, make your own cosmetics, toiletries, and cleaners, take no medication and would refuse an IV if you are hospitalized, you actually don’t know what your body is taking on either. So far, I have had zero side effects from receiving the Moderna vaccine three times over. But, if I end up growing a third eye, you know I’ll have use for it.
One thing about posterior uveitis is that without microscope and imaging technology, diagnosing and managing the disease would be nearly impossible. It’s never lost on me (or my insurance bill) how these advanced cameras let the outside world in on what is going on in the back of my eyes.
When I see a machine like this one, I see beauty in the technology that is allowing my doctor and me to preserve my vision:
optos.com
A brief definition of tools, tests, and terminology can be found here.
This post is a summary of the imaging I get done every 4-6 weeks when my eyes are active.
Fundus photography
A fundus camera is basically a microscope with a camera attached which photographs the back, interior part of the eye when the eye is dilated.
“Fundus photography documents the retina, the neurosensory tissue in our eyes which translates the optical images we see into the electrical impulses our brain understands. The retina can be photographed directly as the pupil is used as both an entrance and exit for the fundus camera’s illuminating and imaging light rays,” according to the overview excerpted from Saine and Tyler’s Ophthalmic Photography, as posted on the Ophthalmic Photographer’s Society’s website. The page contains a detailed description of the process.
Top Image: Normal Eye (Retina Image Bank) the bright spot is the location of the optic nerve ***** Bottom Image: My right eye with tons of lesions and scaring from past inflammation due to uveitis. These are the areas that I cannot see through when they are in my field of vision. (8/28/2020)
Fundus photography is a valuable technology. Photographs can be used for comparisons from visit to visit and year to year which enables doctors to notice even minute differences inside the eye that may not be noticeable by simply looking at current conditions. Photographs also leave less room for details lost to memory, interpretation and error in note-taking. Although there is, of course, still room for artifacts of the images, shadows, or simply that angle and magnification are not always easy to replicate.
Angiography
Fundus photography of the vessels in the retina can be done with different filters or with specialized dyes, which is called angiography (“to write or record vessels”). Angiography is used to diagnose conditions such as choroidal neovascularization. The dye is injected into an arm vein of the patient and then retinal photographs are taken.
Intravenous fluorescein angiography (IVFA) uses a dye called sodium fluorescein which fluoresces in yellow-green and produces high contrast in the vessels so to see enlarged or leaky vessels in the retina. Indocyanine green (ICG) is another type of dye but fluoresces in the infrared range which makes it easier to see vessels even when there is fluid or hemorrhaging around the area. It is used to highlight the choroid. Both dyes are highly concentrated and will take about a day to pass through your system (i.e. expect neon urine). Angiography is not recommended while pregnant.
IVFA of my right eye on 8/28/2020
ICGA of my right eye on 8/28/2020
Optical Coherence Tomography
Optical Coherence Tomography (OCT) uses light waves to document a cross-section of the tissue layers of the retina. This test enables your doctor to map and measure the thickness of the layers and note any irregularities. Like fundus photography, OCT is non-invasive, and in my opinion, is much easier on the eyes due to the lack of flash and the fact that you can blink at any time during the exam.
I’m fortunate to go to the Karalis Johnson Retina Center at the University of Washington Eye Institute, which is not only a clinic but a research facility with the latest technology. The Retina Center recently opened in a new location with new imaging equipment and the difference is night and day in terms of eye fatigue from having photos taken. The flash is so much less bright. This makes it easier to keep eyes open to take the photos. Technicians are looking for photos at angles and magnifications comparable to those previously taken.
OCT of my right eye. Notice the bump of fluid from the vessel (that’s not supposed to be there) due to choroidal neovascularization. (08/28/2020)
Want to learn more?
The Optos Virtual Showroom is kind of a fun, interactive website if you want a look at what a $200,000 camera looks like and the kinds of photographs it produces!
I’ve felt pretty uninspired in the last couple of months. I know I’m not alone. I have bursts of focus, but they seem to require all my energy.
During the first week in December, I noticed that a blood vessel had ruptured in my right eye at the location of the stitches from my Retisert. It came suddenly and went away just as fast. It turned out to be nothing… but it threw me for a loop. I’m usually fairly decent at compartmentalizing my eye issues, but it took me a while to drag myself up from the low this time and I know it’s because of everything else going on.
The mental weight of having a chronic illness can be heavy under “normal” circumstances, but in a pandemic, it sometimes feels almost crushing. My older son’s school district is planning to implement hybrid learning for kindergarten next month (they’ve been virtual thus far). COVID-19 cases are the highest they’ve ever been (even without the new variant) and the bar for “acceptable” case numbers per 100,000 people, per County seems to be a moving target. If we don’t hit the goal, we change it. At this point, I’m not willing to risk my vision so that he can spend half his day in a mask. I can’t help but feel guilty. Kids need to socialize right? What is worse – having no social life temporarily or potentially having a blind parent? I don’t want to put myself in the position where I have to go off of the medicine that is preserving my vision to potentially save my life.
If you’re like me and on immunosuppressants for uveitis, you’re a bit down the priority list in terms of the COVID-19 vaccine.
The CDC website states the following, under People with Certain Medical Conditions: “COVID-19 is a new disease. Currently there are limited data and information about the impact of many underlying medical conditions on the risk for severe illness from COVID-19. Based on what we know at this time, adults of any age with the following conditions mightbe at an increased risk for severe illness from the virus that causes COVID-19:
Immunocompromised state (weakened immune system) from blood, bone marrow, or organ transplant; HIV; use of corticosteroids; or use of other immune weakening medicines.”
“Might be,” as in, somewhere down the list from those with conditions that “are” at an increased risk. Among those conditions is smoking, which is a hard pill for me to swallow (and I take a lot of pills) since that’s a choice, and uveitis is Not a choice.
I know the line has to be drawn somewhere. In Washington, that line seems to be at least Phase 2 for me (currently listed under “future phases” on the vaccination timeline).
So, I wait. We wait.
Just know that if you are feeling the loneliness of isolation, the frustration of being the one for whom everyone else needs to be physically isolated, you’re not alone (or at least, we are alone, together).
In additions to sites posted on my Stories and Support page, here are a couple of other resources:
The Ocular Immunology and Uveitis Foundation out of Boston has been hosting its Support Group Meetings via Zoom; you can join their mailing list to get notified.
There are websites such as Patient Worthy specifically for folks with rare diseases (I submitted one of my blog posts) and communities like “Chronicon” for people with a chronic illness (there is a fee for this one, and I have not looked into it yet).
I am happy to report that after a year of medication trial and error, my eyes were quiet at my appointment this month. “Finally!” in the words of my doctor, as we both took a breath before she injected my final Avastin shot (hopefully) of the series. (See blog post: “The latest on my uveitis“)
I moved some things around on the website and created the “Complications” page, under Treatments, which includes side effects stemming from uveitis and treatments of uveitis. I hope it’s helpful.
With the official “year of vision” behind us, I’ll continue attempting to manage the stress of life right now in a productive manner, processing information and emotions from the past year. If only my hindsight was 2020!
I’ve spent this year going to the University of Washington Medical’s Karalis Johnson Retina Center on a monthly basis in an attempt to get my uveitis under control. Last winter, in addition to prednisone, I started taking Cellcept, first 1000mg twice a day, then 1500mg twice a day.
Cellcept (mycophenolate) is an anti metabolite, which slows down the immune system, and is most often used as an anti-rejection medication after organ transplants. (Read about uveitis treatments here). It gave me an upset stomach at first, but a month in, I no longer experienced that side effect. The worst part about Cellcept for me is just the timing of taking it. You can’t eat an hour before or two hours after taking it, which means I have to get up and take it awhile before breakfast and I have to schedule my Saturday night snacking around it. This I can handle.
Yet Cellcept, in addition to 20 mg of prednisone was still not controlling my inflammation. So, we introduced Humira, which is a self-administered injection to the thigh or stomach every other week. Humira is a “biologic” that blocks a protein called TNF-alpha, which is believed to be produced in excess in those with non-infectious uveitis.
I can’t say I’ve noticed any side effects specifically from the Humira. In my experience, the company goes almost overboard with assistance. The only thing I don’t like is that it is mailed in a large styrofoam box every month (with ice packs to keep it cold), which I feel guilty about throwing away. I even tried to give the boxes away online… Surprisingly no one wants medication boxes during a pandemic… go figure.
Cellcept and Humira are both known to take a few months to reach full efficacy, so I received two Ozurdex injections in the spring.
In terms of overall side effects, I have noticed I am bruising super easily, am more dried out than before and my hair is thinning a bit. These are potential side effects of pretty much all immunosuppressants so it’s hard to isolate what’s causing what, or if it’s just the fact that I’m on three different medications. I’m down to 7.5 mg of prednisone at this point, so I’m sleeping much better.
Thus, the good news is, my inflammation seems to be under control. However, in July my optical coherence topography (OCT; see Tools, Tests, and Terminology) showed a bit of fluid in the retina, and there was a new hemorrhage that showed up on my fundus photos. So, I received an Avastin injection.
In August, my doctor had a few diagnostics run. A Fluorescein Angiogram (FA) and Indocyanine Green Angiogram (ICGA), along with another OCT, pointed to choroidal neovascularization membrane (CNVM) or choroidal neovascularization (CNV). This is another side effect of uveitis; it’s listed in the “Terminology” section of my website. [Side note: this experience is making me think that maybe I need to take the “terms” on that page which are actually complications of uveitis and make a separate page that goes further into detail about each. So, stay tuned for that if you’re interested.]
For now, neovascularization means ‘new blood vessels’. When damaged by disease, the retina may produce too much vascular endothelial growth factor (VEGF) which leads to the production of new blood vessels. The blood vessels grow from the choroid into the retina. However, unlike normal vessels, these vessels are leaky and allow fluid from blood or blood cells to enter the retina because the tissue is damaged. (Choroidal neovascular membrane, 2017)
“This fluid can immediately distort the vision because it forms a blister in the retina, which is normally flat. Over the course of days to months, this fluid can damage the retina, killing the light-sensing cells, called photoreceptors” (What is Choroidal Neovascularization?, 2020).
According to one article, CNV is commonly associated with Multifocal Choroiditis, which is what I have, and is found in 32-46% of patients (Neri, Piergiorgi, et al., 2009). Just when I feel like I’ve about filled up my punch card of uveitis complications, I discover I have another!
In September, the swelling looked like it was dying down after the first Avastin injection, so I made the choice not to receive another injection. At my October appointment, however, the fluid and hemorrhage were not gone, so I received the first of my series of three, to be done 4-6 weeks apart.
Speaking of injections, a common side effect of injections or surgical procedures involving the eye is Ptosis, or drooping of the upper eyelid. I had this pretty noticeably after my Retisert implant surgery, so much so that I considered surgery to fix it! Luckily my lid “bounced back.” Lately, since I’ve been seeing myself on all these Zoom and Teams virtual meetings, I feel that my right eyelid is getting there again (my husband says I notice it more than others… which may be the case, but it still bugs me!). I recently read that there is a new drop out to fix this issue. Upneeq was approved by the FDA this year to treat acquired Ptosis (First Prescription Fix for Droopy Eyelid, 2020). I am anxious to try these drops but am choosing to wait until my CNV is resolved before adding in another variable. In the meantime, I’ll continue to just use my eyelash curler in an attempt to keep my right eye looking peppy…
Lastly, because I’ve been on varying dosages of prednisone for quite a while, I had a Dual-energy X-ray Absorptiometry (DEXA) Scan done in 2018. A DEXA scan measures bone mineral density and bone loss, which is a side effect of long term systemic cortical steroid use. At that time, my results showed minor osteopenia in my lumbar spine and left hip. (Read Prednisone: The Good, the Bad & the Ugly Part I and Part II.)
Osteopenia is the precursor to osteoporosis, which is when bones are weak and brittle due to too much bone loss. Since that time, although I have continued to be on steroids, more so this last year than the previous, I have increased my weight-bearing exercise and been very diligent about taking calcium supplements daily.
I had a follow-up DEXA Scan in October and both areas of osteopenia are now in the “normal/ expected range for age.” My bone mineral density increased 3% in the lumbar spine and 1.5% in the left hip. Diet and exercise do work!
So, that’s what’s been going on with my uveitis as of late. Here’s to hoping the new year will bring fewer visits to the Retina Center!
It’s getting close to “Thriller” night and my family loves Halloween. Monsters and ghouls just really intrigue my sons. I think it’s the “good vs evil” thing. If only life were so clear cut.
When you become a parent, you start to notice the suggestive nature of every little detail in movies, songs, and media. In the last couple of years, I’ve paid more attention to “heroes” and “villains” than I ever did watching movies as a kid. My sons noticed right away that the bad guys and gals so often have red eyes. It made me feel… well, kind of bad. It’s not uncommon for me to have red eyes (and I don’t even have anterior uveitis, which is characterized by inflammation in the visible part of the eye). Does it make me a villain? I decided to attempt to research the history of these malicious red eyes.
One source, “Wiki Evil,” which is all about characters and tropes, claimed the following: “Those with glowing red eyes are almost without exception thoroughly evil or, at least, very dangerous. The “almost” section goes to those whose red eyes serve as a marker for their Elemental Powers, typically fire” (Red Eyes, Take Warning).
This idea of fire piqued my interest, particularly because in January my naturopath recommended that I try acupuncture as a practice for my general well-being and my eye condition. I thought, if nothing else, it would be relaxing; I’d gone a few times, years ago. I received three treatments before the pandemic started. The acupuncturist whom I saw said that she had treated uveitis patients. I was skeptical going in, and not surprisingly, those she treated had anterior uveitis and the nature of their recurrence was of course unknown to me. I told her that I had posterior uveitis, was on medication and rarely knew when I was having a flare, so there would be literally no way of knowing if acupuncture helped. Nonetheless, I was interested to learn what Eastern medicine had to say about the eyes. And, I did enjoy the sessions.
She told me the eyes were connected to the liver. The internet agrees. According to Traditional Chinese Medicine, all diseases involving the eye are closely related to the liver (Healthy Eyes with Chinese Medicine).
The liver is the largest solid organ in the body and holds roughly 13% of your blood at any given time (What Does the Liver Do?, Liver: Anatomy and Function). Among its more than 500 vital functions, the liver receives the blood, cleans it, and clears toxins; it sorts the nutrients and proteins in the blood, processing them into usable forms for the body and excreting the waste into bile or blood. In Traditional Chinese Medicine, the liver is responsible for the flow of Qi (“vital life force”) in the body. “Illness or disease is seen to be a blockage of the flow.. [in addition] If the Qi is disrupted, there can be anger, frustration, depression…”(Loving Your Liver with Chinese Medicine).
Liver fire, which according to Traditional Chinese Medicine, can manifest as red eyes, and may be caused by “difficulty in managing stress and anger appropriately” (Liver Fire In Traditional Chinese Medicine, 2020).
Are you picturing an angry villain from your favorite Disney movie yet?
In this line of thought, because the liver “opens into the eyes,. It is responsible for the ability of the eyes to see clearly, literally and figuratively, causing not only blurred vision and other eye issues, but the inability to recognize what is happening, to plan into the future and literally focus on your life (Loving Your Liver with Chinese Medicine).
Fear not, Traditional Chinese Medicine has recommendations, including acupuncture, beneficial foods and herbs, and lifestyle changes (healthy expression of feelings) to help restore the liver and thus kill off the evil villian (note: evil villain comment is NOT part of Chinese medicine). One of the articles I’ve cited, written by Emma Suttie, D.Ac, AP for Chinesemedicineliving.com (Loving Your Liver with Chinese Medicine) has many suggestions.
Acupuncturists use the needles to open up blockages along streams of energy in the which connect different parts of the body to specific organs. In addition to other points, I know my acupuncturist used the following two points (Healthy Eyes with Chinese Medicine):
Jingming (UB-1) Urinary Bladder Channel, lies where the inner corner of the eye meets the nose. Bladder 1 and 2 are perhaps the best two points for eye problems of all kinds from early-stage cataracts or glaucoma to hysteria with vision loss. They are also used for problems with conjunctivitis due to Wind-Heat and Liver Heat, to blurred vision in the elderly due to Deficient Jing and Blood
Zanzhu (UB-2) Urinary Bladder Channel, lies in the depressions at the inner ends of the eyebrows. Bladder 1 and 2 are perhaps the best two points for eye problems of all kinds from early-stage cataracts or glaucoma to hysteria with vision loss. They are also used for problems with conjunctivitis due to Wind-Heat and Liver Heat, to blurred vision in the elderly due to Deficient Jing and Blood
Still, I feel that the “angry, confused” persona doesn’t really fit me. I’m not the most easy going individual, but I usually don’t rage without some decent provocation (at least pre-pandemic…). And, I know I was even LESS angry before I had all these medications to take to avoid going blind. I also have always been pretty healthy. Am I just in denial?
Interestingly enough, the original “evil eye” was blue (which still doesn’t help me). Many ancient cultures believed that folks could curse one another just by giving them a dirty look. This would often occur when someone reached great success and others looked upon them with jealousy.
“The power of the evil eye was so prevalent that much was written about it. For example, around 100 AD, Plutarch, the Greek philosopher, explained in his Symposiacs, that the human eye was a powerful organ that could emit invisible energy rays. These rays, he added, were strong enough to kill young children and small animals,” according to Historydaily.org (The Evil Eye).
“[Plutarch] mentioned that the tribes of people living south of the Black Sea were especially good as casting curses, as were people with blue eyes. For people living around the Mediterranean Sea at that time, blue eyes were rare. In fact, blue eyes seemed so unnatural that they had to be bewitched” (The Evil Eye).
Thus, the eye-shaped amulet (nazar), which protects one against this malevolent glare (especially if you don’t see one being passed your way), is cobalt blue.
The superstition of the “evil eye” and the use of the amulet are still in full force today. Depictions of the amulet are on everything from jewelry to home decor; it’s a common practice for many to bring an amulet in one representation or another to a new baby.
Whether you believe the eyes are the windows to the soul* or not, it’s still fun to read about the ideas of various cultures and remind yourself to take a deep breath so as not to be mistaken for Cruella De Vil, with or without the red eyes.
It’s a new season in this crazy pandemic year. With fires blazing, school in session, and elections and holidays on the horizon, life is not easy right now, and on medication, it can be even more challenging to navigate. With that said, the following is Part II of information on Prednisone that I think is useful. Drop me a line if you think I missed something important!
Interactions
In Part I, I discussed interactions with prednisone by way of calcium and potassium absorption (i.e. it inhibits absorption, so supplements are recommended), and also the interactions between insulin and sugar (i.e. limit sugar on prednisone, this includes alcohol). Other interactions include some anti-infectives, anti-diabetic agents, and non-steroid anti-inflammatory drugs (NSAIDs). If you are taking other medications along with prednisone, talk to your doctor, and check interactions on drugs.com or another trusted website (https://www.drugs.com/tips/prednisone-patient-tips).
Tapering and Withdrawal
I’ve tapered down in dosage many times and gone completely off of prednisone a couple of times. The importance of tapering cannot be overstated. In Part I, I talked about Adrenocortical Insufficiency. When on prednisone for more than three weeks, the body becomes reliant on it for cortisol and stops making its own (How do you to taper off prednisone?). So, it’s important to wean your body off the supplemented steroid so it does not crash and leave you with a whole host of painful (and potentially dangerous) withdrawal symptoms. Even with tapering, you may have withdrawal symptoms; the longer you’ve been on prednisone, the more likely it is that you will have them.
Withdrawal Symptoms may include:
Severe fatigue
Joint pain
Fever
Stiff or tender muscles
Body aches
Lightheaded feeling
No appetite
Labored breathing
Vomiting
Weight loss
Headaches
Adrenal crisis, a rare, possibly fatal reaction to a lack of steroid hormone in your body
Depression
Anxiety
For me, fatigue, or just being able to sleep better, is always the first and most common symptom of tapering off of higher doses, All of the bad side effects slowly start to fade away. However, when I have gone to taper off of prednisone, from only 10 mg, even when I thought I was tapering slowly, I have had excruciating joint pain. I was convinced that I had arthritis or another autoimmune condition had been revealed last time I tapered. I would wake up and barely be able to move my fingers! My knees and back just ached. I felt like I was 80 years old! I thought I was insane; I was only coming off of 10 mg! Then I read the following statement, from Adrenal Insufficiency United’s “Glucocorticoid tapering and adrenal suppression testing guide,” which was such a relief to me:
“[Withdrawl] Symptoms are milder at high cortisol amounts and intensify when milligrams are reduced below a certain point. A longer adjustment period is recommended at lower doses.”
The guide linked above includes tapering recommendations. There are others available online, such as these on RheumInfo.com. I recommend reviewing some and thinking about what might work for you; different methodologies exist (stair steps, alternating dosage days, etc) and it might take trial and error to discover to which your body responds best. Take examples to your doctor before you start your taper or if you are experiencing painful withdrawal symptoms. Tapering can take weeks or months, depending on your dosage and the duration of treatment.
Pregnancy and Breastfeeding
I’ve made it no secret that I took a low dosage (~10 mg if I recall correctly) during my two pregnancies and while breastfeeding, and my sons incurred no known side effects. I’m not advocating one way or another, this is just my experience and it coincides with the latest information out there, which is that taking prednisone during pregnancy does not significantly increase the background chance of having a baby born with a birth defect (Mother To Baby, 2018, linked below). I did make the choice to not donate breast milk to anyone because of my medication. I discuss my pregnancy experience in my blog post: Women and Uveitis: my pregnancy journey and I’ll link the articles I cite in the post regarding prednisone here:
I also recommend reviewing Prednisone on “LACTMED” the Drugs and Lactation Database. This page includes information like drug levels detected after certain amounts of time which can be useful in trying to time feedings or pumpings to have the least amount of drug present possible.
COVID-19
Although COVID-19 is a new pandemic, there has already been work done compiling information regarding the impacts for patients on corticosteroid treatment, as well as recommendations for further treatment. I have a handful of links and papers on the home page of this website. Taking immunosuppressants during a pandemic is something to consider carefully.
A collection of COVID-19 cases among 600 patients with rheumatic diseases found that “glucocorticoid use at a prednisone-equivalent dose ≥10mg/day was associated with an increased odds of hospitalisation, which is in agreement with prior studies showing an increased risk of infection with higher dose of glucocorticoids. The study also demonstrated “that most individuals with rheumatological diseases or on immunosuppressive therapies recover from COVID-19, which should provide some reassurance to patients” (Gianfrancesco M, Hyrich KL, Al-Adely S, 2020).
In another paper, 139 uveitis experts from around the globe were given statements and answered questions about treatment options for Non-Infectious Uveitis (NIU) patients and Immunomodulatory Treatment (IMT). [IMT is the treatment of disease by activating or suppressing the immune system. In the case of treating uveitis, the medications are reducing or suppressing the immune system.] Statements were developed around when to initiate, continue, decrease and stop systemic and local corticosteroids, conventional immunosuppressive agents, and biologics in patients with NIU in increased risk, high risk, and very high-risk categories.
This paper contains helpful tables and flow charts on recommendations based on your risk category and specific treatment types.
Summarized results related to corticosteroids:
Surveyed uveitis experts recommended to not begin systemic corticosteroid or immunosuppression for NIU treatment in sick patients with suspected or confirmed COVID-19, irrespective of risk group.
Among sick patients receiving high-dose corticosteroid, consensus was to taper the dose in all risk groups and to taper even low-dose corticosteroid in high-risk patients or very high-risk patients. Tapering instead of abrupt cessation of the oral corticosteroids was recommended in view of the risk of adrenal insufficiency. This paper is full of useful tables and flow charts to follow based on which risk level you’re at.
In healthy patients, experts agreed to start oral corticosteroids only in increased risk patients and not in high-risk or very high-risk patients.
Low-dose oral corticosteroids and conventional IMT should be maintained, while only in increased risk or high-risk patients, higher-dose corticosteroids should not be tapered and stopped.
In healthy patients with a contact history, the overall agreement is lower. Low oral dose corticosteroids and conventional IMT should be maintained in increased risk patients.
Although first-line treatment for NIU consists of local or systemic corticosteroids, overall consensus emerged that in the setting of the COVID-19 pandemic, the use of systemic corticosteroids should be avoided in sick patients and local therapy (regional corticosteroid injections) should be preferred to systemic treatment in all patients, irrespective of their risk and health, except in healthy patients not already on corticosteroids. Systemic corticosteroids might be harmful, given their mechanism of action that inhibits the immune responses and affects the pathogen clearance.
Prednisone was synthesized in the mid-1950s by Arthur Nobile and has since been a miracle and a misery for people with autoimmune and inflammatory disease.
When I first started taking prednisone in 2011, I had no idea what I was in for and it showed. I gained about 10 pounds pretty quickly, “moon face” and all. When my brother came to visit he told me he barely recognized me. I had terrible acne that covered my chest and neck. My knees ached so badly I couldn’t stay in bed, and since I couldn’t sleep anyway, I was up early and late. I was completely miserable.
I was on 40-60 milligrams (mg) at the time, which is a lot. A dose above 40 mg is considered a “high dose,” while anything below 7.5 mg is considered a “low dose” and to be “steroid sparing” (most patients don’t experience the side effects known to be associated with prednisone at this level) (https://www.aocd.org/page/SteroidsOral).
The prednisone did its job; my uveitis was brought to a screeching halt. But I couldn’t stay on the high dosage forever (thankfully) due to all of the side effects. I transitioned to combinations of prednisone and methotrexate and cyclosporine, eventually turning to RETISERT (see Treatments page).
I’ve been on and off prednisone since then, more time on than off, but at a much lower dosage. Typically I’ve been on 5-10 mg with pulses when I have a flare. And, I can honestly say, it’s often the only thing that keeps my uveitis at bay. That’s why prednisone is prescribed so regularly for a myriad of different conditions; it works and it works fast. Although the side effects of prednisone at high doses are likely unavoidable, I now am aware of them, long and short term, and what I can do to lessen them.
Let’s start at the beginning.
What is prednisone and what does it do?
Prednisone is a synthetic glucosteroid. It is a type of corticosteroid that is closely related to and mimics cortisol, which is a hormone naturally produced by the adrenal gland in the body.
When the body becomes stressed, the pituitary gland at the base of the brain releases ACTH (adrenocorticotropic hormone), which stimulates the adrenal glands to produce cortisol.
The extra cortisol allows the body to cope with stressful situations, such as infection, trauma, surgery, or emotional problems. When the stressful situation ends, adrenal hormone production returns to normal.
The adrenal glands usually produce about 20 mg of cortisol per day, mostly in the morning, but they can produce five times that much when needed in a stressful (or perceived to be stressful) situation. Prednisone, the most commonly prescribed synthetic corticosteroid, is four to five times as potent as cortisol. Therefore, roughly 5 mg of prednisone is equivalent to the body’s daily output of cortisol. There are other synthetic corticosteroids available which differ in potency and half-life (Eustice, 2020).
During a stressful scenario your body is in “fight or flight” mode and thinks of little other than dealing with the stressor. Therefore, when you have increased corticosteroids in the body, your body blocks substances that create inflammatory actions called prostaglandins (which initiate healing and deal with allergic reactions) and white blood cells (which destroy foreign cells and allow the immune system to function properly). In this way, corticosteroids suppress the immune system.
Cortisol also helps to control the salt and water balance in the body as well as regulates carbohydrate, fat, and protein metabolism. When you have a heightened amount of corticosteroid in your body, this system too is thrown out of whack. And thus, we have side effects.
Side Effects of prednisone
There are known side effects of prednisone, particularly with prolonged use, for virtually every system in the body. I’ve summarized some of the more common side effects below. Check out Drugs.com for a more complete list and more details.
When reading through some of these, it’s clear that many are connected and all are impacted by daily actions such as diet, exercise, stress response and sleep.
Adrenocortical Insufficiency
When given in a stronger dose than the amount the body can produce on its own, for prolonged periods, glucocorticoids may cause decreased secretion of endogenous (self-made) corticosteroids by suppressing pituitary release of corticotropin (secondary adrenocortical insufficiency). Basically, since you’re taking prednisone, the body senses the level of steroid is “high enough” and stops making as much. This is why it is dangerous to stop taking prednisone cold turkey (I’ll post about tapering off prednisone next month). The degree and duration of adrenocortical insufficiency is highly variable among patients and depends on the dose, frequency and time of administration, and duration of therapy. Talk to your doctor about adrenal supplements and lifestyle changes if you are feeling sluggish and tired all of the time (especially on high doses of prednisone).
Immunosuppression and Increased Susceptibility to Infection
Increased susceptibility to infections is common on prednisone. It’s easier to get sick when the immune system is suppressed. This can mean anything from serious and potentially fatal infections like chicken pox and measles to persistent athlete’s foot and candida. Read Study Warns about higher infection Risk.
Remember that administration of live virus vaccines, including smallpox, is contraindicated (advised against) in patients receiving an immunosuppressive dosage of glucocorticoids. Glucocorticoids, especially in large doses, increase susceptibility to and mask symptoms of infection.
Infections with any pathogen, including viral, bacterial,or fungal infections in any organ system, may be associated with glucocorticoids. There are a variety of ways to get rid of or lessen the severity of infections such as fungal infections, both with and without medication. In my experience, diligence is paramount if you are going to be on prednisone for a while.
Musculoskeletal Effects
Muscle wasting, muscle pain or weakness, and atrophy of the protein matrix of the bone resulting in osteoporosis or osteopenia can all be side effects of prednisone. Osteoporosis and related fractures are one of the most serious adverse effects of long-term glucocorticoid therapy. The American College of Rheumatology (ACR) currently considers patients receiving or planning to receive greater than 2.5 mg of prednisone daily for three months or longer to be at risk for bone loss (Glucocorticoid-Induced Osteoporosis).
A high protein diet may help to prevent adverse effects associated with protein catabolism. Calcium and vitamin D supplementation and weight-bearing exercise that maintains muscle mass are suitable first-line therapies aimed at reducing the risk of adverse bone effects.
I had a Dexascan in 2018 which showed slight osteopenia in my hips. It surprised me because I’ve always been pretty active and wasn’t on a high dose of prednisone at the time (I was nursing my second son at the time which may have contributed). I’ve since increased my calcium and vitamin D and my weight lifting. My insurance covers another scan this December, so we will see if it worked!
I also remember when I was on 60 mg, the pain in my lower back and knees was so bad I would wake up at night and not be able to sleep.
Ocular Effects
As many of us with uveitis know, the treatments often involve the side effect of cataracts and increased intraocular pressure. Prolonged use of prednisone may result in posterior subcapsular and nuclear cataracts and/or increased intraocular pressure (IOP) which may result in glaucoma or may damage the optic nerve if left unchecked.
Nervous System Effects
Side effects of prednisone include insomnia, mood swings, and depression. I tend more toward the “intense” side of personalities at times (hey, I’m a Scoprio.. what can I say?!) and when I’m on higher doses of prednisone I have to consciously remind myself to tone it down a little. Especially when I haven’t slept much due to high doses; I usually notice trouble sleeping when I’m on 20 mg or more. Another side effect I’ve noticed, but don’t generally read in the literature is feeling warm all of the time, which can also impact mood and sleeping. Altering your sleep schedule (can you fit in a nap?) based on when you sleep best can help as well as just giving yourself down time and plenty of grace… and space.. from other people (sort of kidding).
Endocrine and Metabolic Effects
Prednisone may decrease glucose tolerance, produce hyperglycemia (high levels of sugar in the blood), and aggravate or precipitate diabetes mellitus, especially in predisposed patients. If glucocorticoid therapy is required in patients with diabetes mellitus, it may be necessary to change insulin or oral antidiabetic agent dosage or diet. Read What is the link between prednisone and diabetes?
The increased requirement for insulin, accompanied by potassium loss, sodium (and fluid) retention and increased appetite often lead to weight gain when uncontrolled. Monitoring carbohydrate and refined sugar, and sodium intake can help with these side effects. See the Prednisone Friendly Diet from Stop Sarcoidosis and Prednisone Weight Gain by Dr. Megan, Prednisone Pharmacist, who has really great info on her site.
Patients with hypothyroidism may have an exaggerated response to glucocorticoids. Glucocorticoids can lower serum TSH levels and decrease TSH secretion through direct effects on TRH in the hypothalamus. Chronic use of high dose glucocorticoids do not appear to cause clinically significant central hypothyroidism (Haugen, 2009).
Sodium retention with resultant swelling, potassium loss, and elevation of blood pressure may occur, but is less common with prednisone. Along with swelling is the less-than-fun phenomenon known as “moon face.” Read Embrace Moon Face and supplement potassium.
Dermatologic Effects
I’ve always struggled with acne, but let me tell you that prednisone acne is real. When I was on 60 mg, I literally bought turtle necks and wore them all the time because my neck and chest were so broken out (luckily it was winter). Prednisone impairs wound healing (remember, it’s telling your immune system to chill out) which can make acne last longer.
Jack reached out to me through livingwithuveitis.com; it’s been really great to meet folks who are out there reading! He’s been dealing with uveitis for two years and is a web designer on a mission to inform other developers about uveitis.
About you:
Name and age:
Jack Pritchard, 25
Hobbies:
Cycling, software development
Last book you read:
12 Rules For Life, an Antidote to Chaos
3 things you can’t live without during #stayathome:
My plants, Comfort food, Calls with Family and friends
About your uveitis:
What type of uveitis do you have / what is your diagnosis?
Chronic Panuveitis in both eyes
Is your uveitis associated with another condition or disease?
Sarcoidosis
How did you know something was wrong? When were you diagnosed and how long did it take?
I had several incidents following up to the official diagnosis. At first it was flashes of lights in the corner of my eyes, associated with weight lifting. Next I lost vision in my eyes for a week when on holiday. Then finally I arrived in eye casualty in October 2018 to be given an official diagnosis and multiple treatments.
How are you currently treating your uveitis? What other treatments and/or procedures have you tried?
I’ve been on just about any eye drop you can associate with the condition. Maxidex, Iopidine, Monopost, Azarga, to name a few. I’ve also taken a number of pills, including – Prednisone, Methotrexate, and Acetazolamide. At the moment, I’m currently on Mycophenolate and Prednisone. I’ve had several injections to the eye to help with the ‘sticking’ on my pupil which haven’t been effective.
Most recently, I’ve undergone double eye surgery in my right eye. One surgery for cataracts to replace the lens in the back of my eye, and another at the same time to implant a Xen implant or ‘shunt’ to reduce the pressure. I’m currently in discussions to get my left eye done. The surgery has saved my life, and restored peace in my mind, as prior to surgery I was in the most difficult flare up of my life.
What is the hardest part of having uveitis for you?
Being able to function as a normal human, my day job requires me to be able to read screens. Going out with friends in time of flare-ups creates discomfort when in light environments and I’ve altered my home setup to accommodate for my sensitivity to light.
How has having uveitis changed your life?
I cannot begin to describe the ways in which is has altered my life. In times of a flare up, or issues it can cause my life to fall into pieces. On the other hand it has changed my direction in life, which could be seen as a positive.
Do you research uveitis (causes, treatments, etc) or get all your info from your doctor?
A mixture of both. Doctors are great at answering quick fire questions I have on my mind or written down. However, sometimes doctors can easily end up getting highly technical in their speech and that’s when I turn to online resources where others have put it in simpler terms for me to understand or reference.
Do you think people know about uveitis? What do you wish people knew about uveitis?
Very few people know of Uveitis, I don’t expect everyone to know. I wish people knew how difficult it was for us to read text, and how much pain light can cause. As it’s an internal health problem, it’s an invisible condition to those you see on the street. As someone who is 25 years old, nobody makes the assumption that I am suffering from an autoimmune disease which makes it hard to see. Most people can afford sympathy to older individuals as it’s assumed they may have health problems, but younger individuals are assumed to be in good health.
Anything else to add?
I’m currently on a journey to make the world wide web a little bit more accessible to those with Uveitis. As a website developer, I am responsible for developing accessible web pages, and with the introduction of new technologies I have been thinking of different ways I can help, even if small.
To help get a better understanding on how I can help, or what I should build, I am speaking with others that have Uveitis or visually impairing conditions. If you too suffer with any condition, please do get in touch so I can chat with you about your condition and alterations you’ve made to your lifestyle.
Living With Uveitis 