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

Into the eyes of the beholder

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!

Read: Advances In Imaging of Uveitis by Alessandro Marchese, et al. (Jan. 2020) http://doi.org/10.1177/2515841420917781.

The latest on my uveitis

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! 

As with many other complications and side effects of uveitis, and uveitis itself, CNV is treated with medication to tell the body to chill out. In this case, Avastin works because it blocks VEGF. It’s an intravitreal injection that is typically done in conjunction with systemic immunosuppressants. (Read: Is Avastin beneficial for choroidal neovascularization?, 2008; and Inflammatory Choroidal Neovascular Membranes in Patients With Noninfectious Uveitis: The Place of Intravitreal Anti-VEGF Therapy, 2020)

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!

Q & A with Jack Pritchard

https://whatjackhasmade.co.uk

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.

Find Jack!

You can email me anytime at jack@noface.co.uk

Website: https://whatjackhasmade.co.uk