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

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 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