Q & A with Lorelei

This week, instead of a topic from my perspective, I thought it might be interesting to read about someone else’s experience. Lorelei has anterior uveitis, associated with Juvenile Idiopathic Arthritis (JIA). I’ll link some sites about JIA at the end.

I met Lorelei’s dad through work before she was born. I remember how scary it was when Lorelei was diagnosed and I couldn’t believe that she also had such a “rare” disease. 10 years later we even see the same doctor. Meeting her, you would never guess she battles an autoimmune disease; it definitely isn’t stopping her!

Lorelei Burnett, 13

About you:

Hobbies: Playing Soccer

Last book you read: Unpregnant

3 things you can’t live without during #stayathome: As much as I hate to say it my phone, a soccer ball and my dogs

About your uveitis:

What type of uveitis do you have / what is your diagnosis? Is your uveitis associated with another condition or disease?

I have Juvenile Idiopathic Arthritis (JIA) which caused my uveitis.

How did you know something was wrong? When were you diagnosed and how long did it take? 

When I was first diagnosed I was three years old and my parents had noticed that my eye was red and inflamed. They took me to the doctor for what they thought was pink eye, but  when the antibiotics for pink eye didn’t work and the different allergy medications they tried didn’t work, they finally decided on sending me to a child ophthalmologist who was the one who diagnosed it.

How are you currently treating your uveitis? What other treatments and/or procedures have you tried?

 When I was first diagnosed I had two surgeries one to remove the lens in my left eye which had a cataract on it. ( At that time I was also one a lot of different steroids which with uveitis can sometimes cause cataracts.) And then another surgery to remove scar tissue from the first surgery. Currently I take Humira which is an immunosuppressant which keeps me from having flare-ups. It’s a bi-weekly injection that I can give myself at home. I also take methotrexate which is a chemotherapy drug which stops me from having reactions to some of the other medications. In the past I was on remicade which you have to take intravenously so it was really hard to go to the hospital and miss so much school.

Do you have flares? What are they like?

When I’ve had flares in the past for me I’ve never really been able to tell when they were happening, my JIA, except for when I was really young, has only affected my eyes so for me there is really no tell-tale sign that I’m having a flare-up. They’ve happened in the past when they’ve been trying to wean me off my medication.

What is the hardest part of having uveitis for you? 

Honestly I’ve been really lucky it really doesn’t affect my daily life. I guess one of the hardest things in the past was having to go to the hospital sometimes having three weeks to get my IV’s. It was hard because I missed a lot of school between IVs and opthamologist and rheumatologist appointments. But since I’ve switched to at home injections it’s been so much nicer. One thing that’s always been super hard is taking the methotrexate when I was younger it was always a battle between my parents and I to get me to take it. It’s really hard on your body and I would end up throwing up most of the times I took it even though I was at such a low dose.

How has having uveitis changed your life?

Aside from doctors appointments and medication it really hasn’t. I can still play sports and do everything someone without uveitis would.

Do you research uveitis (causes, treatments, etc) or get all your info from your doctor?

I’ve researched a lot about it in the past, I actually did a whole presentation on uveitis and JIA for one of my classes this year. 

Do you think people know about uveitis? What do you wish people knew about uveitis?

 Honestly I don’t think a lot of people know about it. I’ve tried to explain it to my friends and when they hear about my surgeries they either get grossed out or I get met with blank stares. I really want people to know that kids get uveitis and arthritis too, in fact JIA is actually more common than childhood type 1 diabetes.

Anything else to add?

I guess I just hope that anybody going through a diagnosis or living with it right now knows that they’re definitely not alone. I also hope everybody is staying safe and staying healthy right now at this crazy time.


Read more about Juvenile Idiopathic Arthritis and associated Uveitis:

Arthritis Foundation: Juvenile Idiopathic Arthritis (JIA)

OIUF: Juvenile Idiopathic Arthritis and Uveitis: What is it and what is its effect on the eye?

Uveitis associated with juvenile idiopathic arthritis

Makeup and Uveitis

We’ve all been staying home for a few weeks now and likely have heaviness in our hearts, so I thought I’d write about a less serious topic. [If you feel like you want to read about COVID-19 as it relates to eye health, head to the homepage where I’ve added a section with coronavirus related links.]

A question I’ve seen come up in online groups is: “should I wear eye makeup if I have uveitis?” Frivolous and unimportant to some, but a valid question for a lot of us!

Photo by Joanna Kosinska on Unsplash

First off, can makeup cause uveitis? No. Uveitis is not an infection and is not caused or exacerbated by wearing eye makeup. Some forms of uveitis are caused by systemic infections or diseases, but that’s a different topic, discussed here.

If you have dry or sensitive eyes, wearing eye makeup may worsen that condition, particularly dependent on the ingredients in the makeup (Impact of Makeup on Dry Eye Disease).

If you’re wearing expired makeup, using dirty brushes or applicators, or sharing makeup, there is a risk of infection or conjunctivitis. This is not fun in itself, (who has toddlers with pink eye?! just me?) but when you have uveitis, it can complicate matters.

For example, those of us who’ve had a trabeculectomy run the risk of blebitis. I once got the worst case of conjunctivitis on a trip to the ocean (see previous sentence about toddlers). I had to go into the doctor to make sure my bleb had not been affected. Luckily it had not. Any opening on the surface of the eye leaves room for infection to enter the eye.

Should you get an infection, it is advisable to throw all of your eye makeup away and start fresh. If you wash your brushes exceptionally well, keep them. When in doubt, toss them too. This is inconvenient and expensive (or an excuse to go shopping…). Sometimes infections are inevitable, but the best way to avoid them is to keep your makeup and tools clean and Do. Not. Share.

I’ve always loved wearing makeup and being diagnosed with uveitis hasn’t changed that. It has, however, changed a few of my makeup related behaviors.

“No makeup” times

Let’s start with when I don’t wear eye makeup. 1) I don’t wear eye makeup to my ophthalmology appointments. 2) I don’t wear makeup after eye surgery until my eyes have healed and I’ve had follow-up appointments. 3) I don’t wear eye makeup after injections until my course of associated antibiotic drops is complete. If I have a hemorrhage, I typically wait until that has cleared before I start wearing eye makeup again. If I had anterior uveitis, I probably wouldn’t wear eye makeup when I was having a flare.

Keep it clean

When I wear eye makeup, I wear clean (as in, non-toxic) makeup. I used to just purchase what was trendy and in cute packaging. Now I research extensively before buying any of my cosmetics. Glitter is out since being diagnosed with uveitis. I don’t buy anything with parabens or phthalates (endocrine disruptors). I check for trimethanolamine (TEA) and diethanolamine (DEA) in mascara and eyeliner. TEA and DEA are ethanolamines that break down into nitrogen, which can form nitrosamines. Nitrosamines are carcinogenic (may cause cancer), according to the Environmental Working Group (EWG)’s Safecosmetics.org.

Another ingredient that I personally avoid, but is very pervasive, is talc in eye shadow. According to the EWG, some talc contains carcinogenic asbestos, although it’s required by law to be asbestos-free. Unless you can verify the talc is asbestos-free, it should be avoided. Talc is also an irritant of the eyes for many people (Is talc in makeup safe?).

Ilia Beauty – The Necessary Palettes (Talc Free)

These are my current favorite clean makeup brands:

Ilia Beauty – The Necessary Eye Shadow Palettes, Clean Line Gel Liner, Limitless Lash Mascara,

Jane Iredale – Pure Pressed Eye Shadow, Eye Pencil, PureLash Mascara

Mineral Fusion – Eyeshadow Trios, Eye Pencil, (didn’t love the mascara)

Thrive Causemetics – Infinity Waterproof Liner, Liquid Lash Extensions Mascara, (eye shadow contains talc as the second ingredient)

Tarte Cosmetics – Lashpaint Mascara, (eye shadow contains talc as the second ingredient)

I.T. Cosmetics – Talc-free eyeshadow

Out with the old

I previously mentioned not using expired makeup. Throw out mascara every 3 months (I attempt to sync mine with changing seasons so it’s easy to remember). Toss eyeliner once a year and eye shadow at least every two years. (When to Throw Away Your Makeup, According to a Dermatologist). If it looks bad, smells bad or you can’t remember when you bought it, it’s probably time to say goodbye.

Additional tips for How To Use Cosmetics Safely Around Your Eyes

Coping when a treatment fails

Photo by Steve Johnson on Unsplash

As the calendar turned to 2020, I decided that my word for this year, for this decade, would be “stability.” I spent the last decade in a state of flux (uveitis diagnosis, getting engaged, buying two houses, having two kids, leaving a job I’d been at for 10 years). I was in and out of procedures for my eyes and pretty consistently trying various cocktails of medications. More recently, intraocular steroid implant injections enabled me to be on a “steroid-sparing” dose of 5-10 mg of prednisone. A bone density scan in late 2018 had shown osteopenia in one of my hips. I’ve since added weight lifting and increased my calcium intake, however, my ophthalmologist (and I) would prefer to get me off of steroids. My naturopath at the time suggested I try hydrocortisone which more closely mimics the body’s natural cortisol. I got a Yutiq injection in the fall and began to taper down steroids in December.

In January, I started a 30-day online yoga program and was feeling fantastic about my health and my goals. Then in the third week of the month, I was driving to work and noticed a smudge on my glasses. When I took them off to clean them, the smudge was still there. My heart dropped to my stomach. At the office, where I don’t need glasses for my computer work (I have a range between reading and distance that is most clear without glasses), I couldn’t really notice anything so I figured I must have imagined it. Yutiq is supposed to be effective for up to three years. It’d been three months. 

The next day was a rare snow day in the Pacific Northwest. Out playing with my family, I started seeing black spots mixed in with the white snowflakes falling. I tried not to focus on them but to be present with my sons. At dinner, the blur was there. A new blind spot. I literally could not believe my eyes. I hadn’t developed a new blind spot in my visual field since I was first diagnosed with multifocal choroiditis. How could I have let this happen? I messed with the formula; I tried to taper the prednisone. In my quest for overall health stability, I had inadvertently destabilized my treatment.   

I finished the dinner my husband had made and did the dishes, choking back tears, listening to my kids playing in the next room. We had had such a fun day, I couldn’t stand to be the one to bring it down. I went upstairs and, swallowing 30mg of prednisone, contacted my doctor. She responded that evening, as I am so grateful she always does, far beyond the call of duty. We formulated a plan until I could get into see her. Unless of course, things got worse, then I was to see someone immediately.

The next 9 days crawled by. I broke down in my car at lunch. I did yoga. I tried to breathe. I wanted stability in 2020 and I got two weeks. Was I becoming resistant to medication? Was it finally happening?

In the doctor’s office, we got more bad news as the optic photography revealed that my left eye was active as well. So, time for Plan B., or more like Plan LMNOP at this point.

Receiving a disease diagnosis is not something you plan on. It can feel almost like the death of your old “healthy” self, depending on the severity. It’s hard to let go of expectations of the way life “should” be. And then when treatments stop working or fail to work, it is very discouraging. (The Betrayal of Expectations: Coping When Life Doesn’t Go to Plan. This is a good read about coping. Not trying to equate failure of one treatment with the death of a spouse… but feelings are relatable.)

Keep in mind, there are various reasons a medication can be ineffective (What if a medication doesn’t work?):

  • Time to “kick in”: Some medications take days, weeks or even months to build up to the proper levels and begin working in the body. Some take even longer to reach maximum efficacy.
  • Special Instructions: Labels and instructions will indicate if the medication is to be taken with or without food, at a specific time of day and where the medication should be stored.
  • Interactions: Many medications interact with other medications, foods or other substances, which can impact effectiveness. Check a website such as www.drugs.com for interactions with your medication.
  • Dosage: Perhaps your dosage is off and more medication is needed to be effective.
  • Just not a match: Not all medications work for everyone.

Currently, there are a number of treatments for uveitis available, which can be used individually or in combination (When Your Uveitis Treatment Isn’t Working).

“When one looks carefully at individual drugs and different regimens, Dr. Jabs said, any one drug works about 50 to 70 percent of the time, and any approach works 70 to 85 percent of the time, but nothing works 100 percent of the time. “That’s why it’s important to have access to someone who knows how to use multiple treatments and knows when to move on to drug 2 or drug 3 if the first drug doesn’t work. You can’t rigidly stick with a single approach and expect it to work with everyone. This is where you move out of the science and into the art of medicine.” “

Doran, Marian. Noninfectious Uveitis: Optimizing Drug Therapy. AAO EyeNet Magazine, 2012, https://www.aao.org/eyenet/article/noninfectious-uveitis-optimizing-drug-therapy.

After discussions of the pros and cons of several medications, some of which I have taken before, some of which I have not, I started on Cellcept in January with a pulse of prednisone. A month in, there were still signs of activity at my appointment. The antimetabolite class of drugs takes at least six to 12 weeks to reach the starting point of efficacy. It’s important to give the medication time to work.

We decided to do an Ozurdex injection to allow me to taper down to 10mg of prednisone during this COVID-19 pandemic. Now I can space out my appointments a bit and wait to see if my body responds to CellCept.

If not, then it’s on to Humira or another combination of options. Flexibility is easier when you don’t have a choice but the road is still not easy. Hoping this path is the right one even if it’s not the final destination.

Immunosuppressed in the Pacific Northwest

I had another topic planned for my post, but it seemed strange not to talk about the virus that currently has our lives held hostage here in Washington State and all over the world. Since many uveitis patients are on treatments that work by suppressing the immune system, diligence when it comes to health and not getting sick is never far from our minds. However, now with the Coronavirus (COVID-19) pandemic, the immunocompromised are a living buzzword, seemingly surviving at the mercy of others.

When the immune system is suppressed or compromised, it makes the body more susceptible to infection and/or more susceptible to a more severe or long-lasting reaction to an infection (If You’re Immunocompromised, You Are at a Higher Risk of Coronavirus—Here’s What That Means).

This is what I’m doing to protect myself and my family.

Avoidance – Social Distancing

I go through my day and see what I can and am willing to change to better protect myself. Some folks are completely self-isolating/quarantining, but I don’t feel the need to do this per se. I have continued to shop, albeit choosing local, smaller shops (who desperately need support right now!) for the most part. Take advantage of curbside and in-store pickups where physical interactions can be limited. Starting March 17th, this will be the only option for restaurants in Washington State.

Even simple changes in your routine can make a difference. For example, at my place of employment, probably a quarter of the employees are female. So, I have decided to not to use any unisex restrooms to cut down on my chances of contracting the virus in the bathroom.

Social events and travel plans have been canceled or postponed for us. We are mostly staying around the house, going on walks and bike rides to get fresh air.

And of course, washing my hands and my sons’ hands for 20-30 seconds every time we return home, use the bathroom, etc. Daycare is still on for them at this time, so we scrub, scrub, scrub!

Treatment Plan – Medications

Recently, my uveitis has become active once again and I started CellCept (mycophenalate) and a pulse of prednisone, both of which suppress my immune system. The timing.. not so great. My husband and I have driven into Seattle every two weeks for the past month and a half to attempt to get my uveitis back under control. Last Friday, my doctor injected an Ozurdex (intravitreal steroid implant blog post here) so that I can start to taper down the prednisone while the CellCept ramps up (hopefully) to full efficacy. Talk to your doctor about changes you can make in your treatment, if any, to lower the dose of systemic medications.

It’s also a good idea to get a bit of a stockpile of medication in case of shortages or the need for isolation. Talk to your insurance company. I’ve found that my insurance will cover a 90-day supply online (https://www.express-scripts.com/), whereas only a 30-day supply at my local pharmacy is covered.

Have a conversation with your doctor about a plan for if you are exposed to or contract the coronavirus. This is important. Despite best efforts, many of us will contract this virus; there is no shame or blame to be had. Contact your doctor right away if you are experiencing symptoms.

Diet and Supplements

One of the most important factors in your body’s ability to respond is what you feed it. Now is a great time to work on adding in more of the “good stuff.”

Boost the body’s natural detoxification systems with:

Cruciferous vegetables – at least 1 cup daily – including broccoli, kale, collards, Brussels sprouts, and cauliflower

Garlic cloves – 2 to 3 every day (or take a garlic supplement)

Organic green tea in the morning instead of coffee

Fresh vegetable juices – including celery, cilantro, parsley, and ginger

Prepared herbal detoxification teas containing a mixture of burdock root, dandelion root, ginger root, licorice root, sarsaparilla root, cardamom seed, cinnamon bark, and other herbs

High-quality, sulfur-containing proteins including eggs, grass-fed whey protein, garlic, and onions

Bioflavonoids which are found in berries and citrus fruits

Celery to increase urine flow and aid in detoxification

Cilantro 

Rosemary, which contains carnosol, a potent booster of detoxification enzymes

Curcuminoids (turmeric and curry) for their antioxidant and anti-inflammatory action

Burdock root 

Chlorophyll found in dark-green leafy vegetables and in wheatgrass

Avoid simple sugars. Sugar and refined grains that turn into sugar can suppress your immune system. Stick to real, whole, fresh foods. Limit refined sugar and flour. 

Supplement with Vitamin C. 

“Mark’s Picks,” Mark Hyman, MD. March 13, 2020

Other immune system boosting supplements are Vitamin D and Elderberry. Always talk to your doctor and check interactions with medications and other supplements before starting something new. See the Healthy Vision page for more diet information.

Sleep

Telling someone to get adequate sleep while on prednisone during a pandemic is a bit like telling them to “sleep when the baby sleeps” (and do laundry when the baby does laundry ;)). Sort of an oxymoron from my perspective. None the less, the body repairs itself while sleeping and deep sleep is vital to the immune system. Force yourself to stop scrolling through your feed of out-of-your-control news (ideally 30-60 minutes before lights out) and get to bed.

Personally, while on any dose higher than 10mg of prednisone, I take melatonin an hour before bed every other night (let’s be honest, every night lately). There have even been studies that melatonin may be beneficial in reducing inflammation associated with uveitis, so if it works for you, that’s a win, win! Melatonin as a Therapeutic Resource for Inflammatory Visual Diseases (2017); Treatment with melatonin after onset of experimental uveitis attenuates ocular inflammation (2014); Melatonin May Save Eyesight In Inflammatory Disease, Study Suggests (2008).

Lifestyle

Continue to move your body and get exercise! If I am feeling a bit under the weather, I make sure to take it easy and walk or do at home yoga instead of more intense weights at the gym when I’m on immunosuppressants (my gym avoidance will start this week). Sweat out toxins in a hot bath. Use a diffuser or apply essential oils to calm and support the immune system (4 Aromatherapy Recipes to Boost Your Immune System). Use extra time at home to work on or start a hobby. Or just sit and relax. I’m choosing lighthearted reading and media for pleasure when the news is so heavy.

Being informed, but limiting news and social media exposure is usually what I aim for, but especially now when a simple click can lead down a path I may be emotionally unprepared for at any given time. There are plenty of articles about How To Calm Your Anxiety About The Coronavirus.

Stay safe and stay connected even when not possible physically. It takes a village to save the village; encourage those you love to be socially responsible. Do what you can do, and that is all you can do.

Update: 3/17/2020 – As the number of confirmed cases in my area continue to increase, I am now working from home and my sons are at home as well. Things are changing fast and it’s been an emotional week (and it’s only Tuesday!). Thankful for the ability to work from home.

Related links:

UW Medicine COVID-19 Patient Question and Answer Page

How to prevent feeling totally isolated in the time of social distancing

Stick a needle in my eye: intravitreal steroid implant injection tutorial

This is when you start being offended by the phrase “I’d rather poke myself in the eye with a sharp stick/pencil/needle” or whatever iteration you hear. You don’t think it’s a common phrase until you start getting poked with a sharp needle in your eye to attempt to save your vision. Then you seem to hear it all the time. And you won’t joke about it or wish it on anyone. Cross my heart and hope to die… you know the rest.

An intravitreal steroid implant injection is a treatment for posterior uveitis during which an implant with corticosteroid is injected into the vitreous (clear gel part) of the eye. It’s a shot right at the target (localized) and allows the rest of the body to be spared side effects of high doses of steroids. Often implants are done in conjunction with lower doses of systemic medication.

The intravitreal implant technology is a relatively new advancement; the first implant was approved by the Federal Drug Administration (FDA) in 2009. The capsule design facilitates the sustained release of steroids, which allows for more time in between injections, theoretically. Realistically, every patient’s eye reacts differently to the treatment. One downside to these implants is that there is no manner of knowing when the implant has actually run its course and is no longer releasing medication.

Before intravitreal implants, corticosteroids were injected into the periocular space (around the eyeball). Now, with the implant injection into the vitreous, the lack of fluid flow in the vitreous humor leads to a higher concentration of the steroid, which is effective for inflammation control (https://www.ondrugdelivery.com/sustained-drug-delivery-posterior-segments-eye/).

However, increased ocular pressure and cataracts are almost unavoidable side effects of intravitreal steroid implants. Infection and retinal detachment are risks of the injections. Read more about side effects and complications of treatments here.

I’ve had eight intravitreal injections. Five in the left eye (Ozurdex and Iluvien) and three in the right (Iluvien, Ozurdex and, most recently, Yutiq). This is my experience and these are my tips.

Intravitreal implants are administered via in-office procedures that can be planned or immediate depending on the case and the patient’s insurance.

Injectable intravitreal steroid implants for uveitis include the following:

Ozurdex contains .7 mg of dexamethasone. The implant is 6mm long and .46mm in diameter. It biodegrades into lactic and glycolic acid. It is injected with a 22 gauge syringe and is projected to disperse steroids for around six months with a peak concentration at two months. Ozurdex was approved by the FDA in 2009 for “noninfectious uveitis affecting the back segment of the eye.”

Iluvien contains .19mg of fluocinolone acetonide. It is injected with a 25 gauge syringe and is projected to disperse steroids for 36 months (three years). This injection is indicated for diabetic macular edema. Iluvein was approved by the FDA in 2014.

Yutiq contains .18mg of fluocinolone acetonide with an initial dispersal rate of .25mg. It is 3.5mm long.  It is injected with a 25 gauge syringe and is projected to disperse steroids for 36 months (three years). Yutiq was approved by the FDA in 2018 for “treatment of chronic non-infectious uveitis affecting the posterior segment of the eye”.

Check out the individual product manufacturer websites for financial assistance if your insurance isn’t going to cover the procedure and device. You will need it. Bills for the injection and the visit run about $13,000 when billed through insurance in my experience. Your doctor’s office billing department should be able to assist or, hopefully, handle the whole process.

Don’t be afraid to ask for a prescription for valium or some type of relaxant to take ahead of time if you’re anxious (unless you’re pregnant or breastfeeding). I find that meditation and yoga practice in my daily life help manage my anxiety during injections.

Make sure to arrange for someone to drive you home after the injection.

The care team will begin by marking your forehead above your eye and confirming the eye and the injection. Cleaning of your eye, lid, and lashes comes next by way of drops. My doctor’s office uses numbing drops and a numbing gel, which is heavy and sticky but does the trick!  If you feel any stinging with the drops, tell the assistant or doctor and get more gel!

One of the worst parts (maybe the worst in my opinion) of the entire procedure is the eye speculum. This is the metal retractor that holds your eye open. Something that has helped the comfort of the injections for me immensely is that my doctor smushed down the speculum so it didn’t open so wide. If you have a smaller face, perhaps request a pediatric speculum or ask your doctor to reshape this device to the least possible width needed for the procedure.

Blink and the doctor places the speculum. Now is the time to start your deep breathing or relaxation technique. Focus on relaxing your face; tensing up and increased blinking will make the speculum more uncomfortable. 

Depending on the gauge of the implant injection needle, your doctor and your preference, your doctor will now inject medication into your eye to numb it. This hurts even with the numbing gel. Look where your doctor instructs. Breathe. Unclench your fists and go to your “happy place.”

Next comes the actual implant injection. This can feel like a lot of pressure on the eye depending on the injection. Ozurdex has a definite “click.” Yutiq seemed to require more pressure than Iluvien in my experience.

More than likely, your injection site will bleed (hemorrhage), especially if you opt for the numbing injection. One of the first injections I received bled so bad the blood spread throughout my entire eye. I stayed home from work. My husband and I had a snowboarding trip already planned that weekend with friends and I deleted the photos.

In addition, I was unprepared for all of the stares and flat out rude comments I received. It made me thankful for once to have posterior uveitis that normally is unseen (folks with Anterior or Panuveitis are probably used to this!). References people that I had never met made to physical or domestic abuse astounded me and still does when I get injections! So, decide ahead of time how you would like to react or not react to any comments that come up. I don’t even waste my breath on a response to comments or questions that are off-color or cruel.

I have found that putting an ice pack on the eye repeatedly for about 20 minutes at a time significantly decreased the bleeding and swelling for me. Make sure to rest the eye that day even if you don’t feel like it’s necessary. Take over-the-counter medication for pain or headaches.

The following survey was conducted with folks who get injections far more often than I, but I agree that injections can bring on anxiety and headaches. Survey: Intravitreal Injections Linked to Discomfort, Anxiety

Last, but not least, be diligent about any follow-up medications or drops your provider has prescribed.

Now, move about your life knowing that you are a badass who can handle getting a needle or two in the eye.

Medline Plus’s Version: Intravitreal injection

What you don’t see: an open letter from a uveitis patient

Heart under investigation; what you don't see
Dedicated to my immune system; the ultimate frenemy. Happy Valentine’s Day.

Of the things we take for granted about our existence, I venture to say vision is pretty high on the list. Even if your eyesight starts to go it can usually be fixed through corrective lenses or surgery. For me, and those with chronic pan or posterior uveitis, once it goes, it’s gone. A blur, a washout, a “blind spot,” never to return. 

There are known causes of uveitis. It’s a symptom of many other diseases, such as tuberculosis or arthritis. It can also be caused by damage to the eye. However, for the many of us, the cause is unknown.

From the day in December that I first saw a change in my visual field, I was passed from doctor to doctor. I started on an aggressive course of prednisone and sent to the University of Washington Eye Institute where I have since been. I was tested for countless diseases and maladies only to have my condition classified as “idiopathic.” Likely categorized as an autoimmune disease in itself, my form of the disease is accompanied by other complications within my eye. It’s taken the vision from a decent portion of the right side of my right eye.

But, when you look at me you don’t see.

You would never guess that I’ve sat through countless dilations, pressure checks, optic photography, Optical coherence tomography (OCT) and the like. You’d never get close enough to notice the tiny blue mark from the steroid implant in my right eye. Or guess that I have two stints to reduce eye pressure and artificial lenses in both eyes. That nearly all of my earned sick time at work goes to my appointments at the Eye Institute. It’s given me such an immense respect for medical technology and those who research and operate it. I never take health insurance for granted.

When you look at my two beautiful sons you don’t know that for a while I was on immunosuppressants and high doses of steroids that were contra-indicative to pregnancy; that I thought I would have to choose between vision and having children. Now, watching them play and fight and laugh is such an honor.

When you look at me you don’t know that there are times when I live in somewhat of a fog. That busy stores overwhelm my lack of vision. That I’m not as adventurous or confident as I once was and that it’s something I struggle with daily. It’s forced me to slow down, take a breath and allow myself adequate time to do things like get to new places or read packaging or labels in a store. 

When I am sick again this winter you won’t realize it’s because once again, every day I take immunosuppressants to slow my body’s response to the battle that is raging in my eye. That vaccines aren’t an ideological game to me. That I take pills and supplements and work on my food and lifestyle choices to preserve my vision. 

In a world where “self-care” is such a buzzword it can be hard to proclaim self-love from the rooftops when your body won’t stop attacking itself.  I’ve had to make the decision that just as I am managing the physical aspects of this disease, I must also confront the psychological. I’ve learned to allow myself stages of grief and acceptance. When the anger comes, I feel it, but I know I can’t live there. I’ve got to dig myself out; whether that’s with facials and bon bons… or not. (A good read: What to do when self-help fails you, according to a chronic illness advocate) Uveitis is a part of my life but I determine how big of a role it plays to some degree. In the end, I think I’ve come out stronger. 

Because when I look at myself, I see someone who isn’t a victim of circumstance or side effects. I see someone who is learning to live life better, no matter what it throws at me. I see someone who knows what it is to see. 

Related reads:

I Suddenly Started Losing My Vision At 29. Here’s How It’s Changed Me.

What People With Invisible Illnesses Want You To Know

Women and uveitis / my pregnancy journey


Women make up the majority of uveitis patients, young and old (Faia and Drenser, 2017). In developing nations this is likely due to lack of access to medical care when the uveitis progresses as a symptom of an infectious disease. In the United States, however, non-infectious uveitis is more prevalent (80-90% of cases) (Yeh and Shantha, 2016) and is most often associated with autoimmunity which occurs far more often in women (Fairweather and Rose, 2007).

The first time I saw flashes was when I ran a Jingle Bell run in December 2009. It was cold and thought maybe I was pushing my body too hard. Then in Costco a few weeks later, the lights were reflecting oddly to me, like there was a glare or a smear over my lens. Only, I had undertaken LASIK surgery a few years earlier and had perfect vision. I stopped in the optometrist’s office before it closed and luckily he had time to see me. He looked into my eyes for a long time. “Is your dad with you?” was the first thing he said to me and I knew something was really wrong. I was 27, living with my fiancé, an hour away from my dad who would have supported my reply which was “No. And they’re my eyes, please tell me what’s wrong.” He said he wasn’t sure but that I need to see my ophthalmologist the next day; it was an emergency. 

I cried all the way home. Test after test came back negative (which was a relief but also frustrating) and my condition as declared “idiopathic” (unknown cause) which seems to translate into autoimmune or autoinflammatory in the minds of many, even if the initial cause is unknown. 

The reason for the higher occurrence of autoimmune disease in women is complicated and not definitively understood. It is thought to perhaps be due to issues with deactivation of genes on the X chromosomes. Since women have two X chromosomes and don’t need two copies of each gene, one of each gene is supposed to be deactivated; when this doesn’t happen in an evenly distributed method, instances of auto-immune disease are more common (Ørstavik, 2017). 

Another line of research suggests that female hormones contribute to auto-immunity. Proper functioning of the immune system requires a balance of Helper Cell Th1 and Th2 (see Immune Page). After puberty and until menopause (two milestones that vastly change hormones, which in themselves can throw the body out of balance), a woman’s world in cyclical in nature, with hormones in flux in phases. Estrogen and progesterone promote the anti-inflammatory response and therefore suppress pro-inflammatory cytokines (signal proteins). A study conducted by C. Sanghvi, K. Aziz, & N. Jones in 2004 “demonstrated a significant increase in the incidence of Acute Anterior Uveitis arising late in the menstrual period.  We postulate that the withdrawal of either or both [o]estrogen and progesterone provokes the onset of inflammation.”

The anti-inflammatory response happens during pregnancy as well. A rise in estrogen and progesterone signal the body to “tolerate” the foreign invader (growing fetus!) by suppressing the Th1 response. This can worsen symptoms in auto-immune diseases associated with Th2 excess (such as lupus) and relieve auto-immune diseases associated with excess Th1 response (psoriasis, MS, rheumatoid arthritis) (Young et al., 2015) Some research includes non-infectious uveitis in the latter category (Yeh and Shantha, 2016).

My fiancé and I got married nearly a year after my vision problems started with no answers in sight (ha…) but nothing seemed to be progressing. By this time I had seen a handful of doctors and before being referred to the University of Washington Eye Institute, which is where I am still seen. To get me off of the high dose of prednisone I was taking (which is pretty miserable, not to mention unsafe long term), my doctor prescribed steroid-sparing drugs (cyclosporine, methotrexate) which had a whole host of different side effects. A major side effect for me was that I was unable to get pregnant on them. 

In 2012, I had surgery to receive a RETISERT implant (a time-release steroid implant in the eye) and a new lens, and weaned off of systemic medication. A year passed and I wasn’t pregnant. Meanwhile my left eye became active and my right eye pressure slowly climbed despite medicated drops. In 2013, I had another surgery to insert an Ahmed valve to reduce intraocular pressure due to the steroids in the RETISERT. 

In 2014, I started seeing a naturopath who put me on a low dose of thyroid medication, increased my progesterone, and within a month I was pregnant. “Glucocorticoids such as prednisone can lower serum Thyroid Stimulating Hormone (TSH) levels and decrease TSH secretion… however do not induce clinically evident central hypothyroidism even after prolonged high dose use,” according to Haugen (“Drugs That Suppress TSH or Cause Central Hypothyroidism,” 2009). Does prednisone cause enough of a suppression that patients may need micrograms of levothyroxine (thyroid hormone) to reach optimal levels or was this a separate issue with my body? Yet another unsolved hormone mystery. 

My obgyn was a doctor in my small city who had never heard of uveitis and I felt very judged about the 10mg of prednisone I was on throughout my pregnancy despite research I had read pointing to an extremely low chance of side effects (as is true with many things you expose your  body to while pregnant). The literature is even more “forgiving” today than when I was pregnant (Read: Prednisone | Prednisolone – MothertoBaby.com (2018) and A review of systemic corticosteroid use in pregnancy and the risk of select pregnancy and birth outcomes (2017)). Of course no one wants to be on medication that makes pregnancy even scarier than it already is, but I weighed the risks of my dose.

The intraocular pressure in my right eye had gone up again during my pregnancy; my body had developed scar tissue virtually blocking off the entire valve. My vision was pretty bad in my right eye at the time and I can remember my face growing hot with humiliation when I would go to pick up my son at daycare and not be able to pick him out of the group! Finally I let the teacher in on my issue (we are still friends to this day although neither of us are at that daycare any longer). From then on she would proclaim “here he is!” with a smile when I arrived and I wondered why I was so hesitant and prideful to not tell her initially. When my son was 5 months old, I had a trabeculectomy.

The night after the surgery my mom stayed with us to help. She and my husband took turns waking with my son as I pumped and dumped my breast milk due to the pain medication I was taking. (Yes, I breastfed on a low dose of prednisone. LactMed is a great resource for medication use during pregnancy; there are applications for mobile devices as well). I remember thinking that night, which was one of my longest nights, with my breast pumps going, my son crying and my eye pulsing in pain, that I just had to get through to morning; I knew that night was temporary even if my disease wasn’t.

I got pregnant faster than I imagined the second time and 22 months after the birth of my first son, we had another little boy. Dealing with the medication, check-ups, procedures, and often urgent nature of uveitis while having small children is definitely challenging, but it can be done with support.

My uveitis flare-ups, unfortunately, have yet to cease and maybe never will. While picking up my steroid prescription with me the other day, my 5 year old asked what the medicine was for. I told him,” for my eye.” He asked why. I told him, “sometimes my eye just needs a little help”; a simple answer for the most complicated part of my life. “Oh, ok,” he responded and we held hands back to the car.  -January 20, 2020

Works Cited

Faia, Lisa J. and Kimberly A. Drenser. “Pediatric Uveitis: Challenging for Ophthalmologist, Patients and Parents,” Retina Today, October 2017, retinatoday.com/pdfs/1017RT_Cover_Drenser.pdf.

Fairweather, DeLisa, and Noel R. Rose. “Women and Autoimmune Diseases1.” Emerging Infectious Diseases, vol. 10, no. 11, 2004, pp. 2005–11. Crossref, wwwnc.cdc.gov/eid/article/10/11/04-0367_article.

Haugen, Bryan R. “Drugs That Suppress TSH or Cause Central Hypothyroidism.” Best Practice & Research Clinical Endocrinology & Metabolism, vol. 23, no. 6, 2009, pp. 793–800. Crossref, www.ncbi.nlm.nih.gov/pmc/articles/PMC2784889.

Ørstavik, Karen Helene. “Why Are Autoimmune Diseases More Prevalent in Women?” Tidsskrift for Den Norske Legeforening, 2017, pp. 1–6. Crossref, tidsskriftet.no/en/2017/06/kronikk/why-are-autoimmune-diseases-more-prevalent-women.

Sanghvi, C., Aziz, K. & Jones, N. Uveitis and the menstrual cycle. Eye 18, 451–454 (2004) doi:10.1038/sj.eye.6700713

Yeh, Steven, MD, and Jessica G Shantha MD. “Retina Today – The Burden of Noninfectious Uveitis of the Posterior Segment: A Review.” Retina Today, Bryn Llc Mawr Communications, July 2016, retinatoday.com/2016/08/the-burden-of-noninfectious-uveitis-of-the-posterior-segment-a-review.

Ian YL Yeung, M.D., Nicholas A Popp, B.S., and Chi-Chao Chan, M.D. The Role of Gender in Uveitis and Ocular Inflammation. Int Ophthalmol Clin., 55(3): 111–131, 2015 Summer doi: 10.1097/IIO.0000000000000072

Living with uveitis: all variables and no control

Posterior uveitis has been a difficult disease from a “loss of vision” perspective, obviously, and because of all the medications and procedures and time sitting in the doctor’s office. However, for me, it’s the lack of ability to experiment with potential “treatments” other than or in addition to, medication. I’m a scientist by training and an experimenter at heart. I want to conduct research, form a hypothesis and test my hypothesis.

Uveitis exhibits an unpredictable and variable clinical course that may be sudden and limited in duration (acute), recurrent and interspersed with episodes of inactivity, or chronic and persistent. It can be difficult to identify patients early in the disease course, given that onset may be insidious. There may be no symptoms before visual impairment, especially in autoimmune conditions limited to the eye, and, consequently, patients may already have experienced vision loss at initial presentation.

Steven Yeh, MD, and Jessica G. Shantha, MD . The Burden of Noninfectious Uveitis of the Posterior Segment: A Review. Retina Today. July/August 2016

With my uveitis, as I’m sure is true with many other diseases, there is no immediate reaction to anything I’ve done, or at least no way for me to realize it. By the time something is amiss, the inflammation has occurred, along with the permanent scaring and possible or probable vision loss. Not really something with which to mess around. Last summer I went through a decent amount of discomfort to get off prednisone, which I have been on and off for 10 years now. I tapered off responsibly after receiving intravitreal injections and wasn’t off more than a month or two when I had more activity show up on my optos photos. So, back on again I went.

I’ve tried various diets, and restrictions (no gluten, do dairy, no nightshades, no added sugar) and different exercise regimes (high impact, low impact). Flare ups have happened when I’m stressed (new baby, no sleep) and when I would think least likely (normal routine or a vacation in Greece). I can’t discern a pattern because I never actually know how long something’s been going on in my eye before I see or feel symptoms (which is rare in itself; often, I’m oblivious to the whole thing). It’s not like many autoimmune disease where someone eats “X”, digestive issues ensue or when this do “Y”, they can’t get out of bed the next day.

The body makes it extremely difficult to get to the retina. For good reason; the retina must be protected! But, what happens when the barriers are compromised and protection is failing? What happens when the pathogen or process your body needs protecting from is within?

My answer is to try my best to control what I can. If I can stay out of the doctor’s office because the rest of my health is as good as I can get it, that that is something. I make my best attempt to follow the topics that I’ve outlined on the Healthy Vision page.

It’s hard when answers are nowhere to be found. You can go crazy searching for them. You have to be your own advocate and be educated, but also can’t get so wrapped up in research that you add more stress to your life!

A couple of years back my mom sent me an article about “living” with chronic illness (read it here). It’s a good read and I thought of it the other day and dug it up in my saved emails. I then realized the coincidence of what I had called this website (living with uveitis). But that is my wish for myself and others: not to just be alive with uveitis but to be living, in the fullest sense of the word. -October 27, 2019