Third Time’s the Charm

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.


Sources and Suggested Reading:

6 Things To Know If You’re Immunocompromised And Considering A 3rd Shot

CDC Website: COVID-19 Vaccines for Moderately to Severely Immunocompromised People

Three Doses of an mRNA Covid-19 Vaccine in Solid-Organ Transplant Recipients

Antibodies aren’t everything: Scientists say COVID-19 booster shots aren’t needed yet—here’s why

More COVID-19 related articles are linked on my homepage

New Year, Same Blur

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 might be 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:

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! 

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