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.

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! 

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!

Prednisone: The Good, the Bad, & the Ugly (Part I)

Prednisone was synthesized in the mid-1950s by Arthur Nobile and has since been a miracle and a misery for people with autoimmune and inflammatory disease.

When I first started taking prednisone in 2011, I had no idea what I was in for and it showed. I gained about 10 pounds pretty quickly, “moon face” and all. When my brother came to visit he told me he barely recognized me. I had terrible acne that covered my chest and neck. My knees ached so badly I couldn’t stay in bed, and since I couldn’t sleep anyway, I was up early and late. I was completely miserable.

I was on 40-60 milligrams (mg) at the time, which is a lot.  A dose above 40 mg is considered a “high dose,” while anything below 7.5 mg is considered a “low dose” and to be “steroid sparing” (most patients don’t experience the side effects known to be associated with prednisone at this level) (https://www.aocd.org/page/SteroidsOral).

The prednisone did its job; my uveitis was brought to a screeching halt. But I couldn’t stay on the high dosage forever (thankfully) due to all of the side effects. I transitioned to combinations of prednisone and methotrexate and cyclosporine, eventually turning to RETISERT (see Treatments page).

I’ve been on and off prednisone since then, more time on than off, but at a much lower dosage. Typically I’ve been on 5-10 mg with pulses when I have a flare. And, I can honestly say, it’s often the only thing that keeps my uveitis at bay. That’s why prednisone is prescribed so regularly for a myriad of different conditions; it works and it works fast. Although the side effects of prednisone at high doses are likely unavoidable, I now am aware of them, long and short term, and what I can do to lessen them.

Let’s start at the beginning. 

What is prednisone and what does it do?

Prednisone is a synthetic glucosteroid. It is a type of corticosteroid that is closely related to and mimics cortisol, which is a hormone naturally produced by the adrenal gland in the body. 

When the body becomes stressed, the pituitary gland at the base of the brain releases ACTH (adrenocorticotropic hormone), which stimulates the adrenal glands to produce cortisol.

The extra cortisol allows the body to cope with stressful situations, such as infection, trauma, surgery, or emotional problems. When the stressful situation ends, adrenal hormone production returns to normal. 

The adrenal glands usually produce about 20 mg of cortisol per day, mostly in the morning, but they can produce five times that much when needed in a stressful (or perceived to be stressful) situation. Prednisone, the most commonly prescribed synthetic corticosteroid, is four to five times as potent as cortisol. Therefore, roughly 5 mg of prednisone is equivalent to the body’s daily output of cortisol. There are other synthetic corticosteroids available which differ in potency and half-life (Eustice, 2020).

During a stressful scenario your body is in “fight or flight” mode and thinks of little other than dealing with the stressor. Therefore, when you have increased corticosteroids in the body, your body blocks substances that create inflammatory actions called prostaglandins (which initiate healing and deal with allergic reactions) and white blood cells (which destroy foreign cells and allow the immune system to function properly). In this way, corticosteroids suppress the immune system.

Cortisol also helps to control the salt and water balance in the body as well as regulates carbohydrate, fat, and protein metabolism. When you have a heightened amount of corticosteroid in your body, this system too is thrown out of whack. And thus, we have side effects. 

Side Effects of prednisone

There are known side effects of prednisone, particularly with prolonged use, for virtually every system in the body. I’ve summarized some of the more common side effects below. Check out Drugs.com for a more complete list and more details.

When reading through some of these, it’s clear that many are connected and all are impacted by daily actions such as diet, exercise, stress response and sleep.

Adrenocortical Insufficiency

When given in a stronger dose than the amount the body can produce on its own, for prolonged periods, glucocorticoids may cause decreased secretion of endogenous (self-made) corticosteroids by suppressing pituitary release of corticotropin (secondary adrenocortical insufficiency). Basically, since you’re taking prednisone, the body senses the level of steroid is “high enough” and stops making as much. This is why it is dangerous to stop taking prednisone cold turkey (I’ll post about tapering off prednisone next month). The degree and duration of adrenocortical insufficiency is highly variable among patients and depends on the dose, frequency and time of administration, and duration of therapy. Talk to your doctor about adrenal supplements and lifestyle changes if you are feeling sluggish and tired all of the time (especially on high doses of prednisone). 

Immunosuppression and Increased Susceptibility to Infection

Increased susceptibility to infections is common on prednisone. It’s easier to get sick when the immune system is suppressed. This can mean anything from serious and potentially fatal infections like chicken pox and measles to persistent athlete’s foot and candida. Read Study Warns about higher infection Risk.

Remember that administration of live virus vaccines, including smallpox, is contraindicated (advised against) in patients receiving an immunosuppressive dosage of glucocorticoids. Glucocorticoids, especially in large doses, increase susceptibility to and mask symptoms of infection.

Infections with any pathogen, including viral, bacterial,or fungal infections in any organ system, may be associated with glucocorticoids. There are a variety of ways to get rid of or lessen the severity of infections such as fungal infections, both with and without medication. In my experience, diligence is paramount if you are going to be on prednisone for a while. 

Musculoskeletal Effects

Muscle wasting, muscle pain or weakness, and atrophy of the protein matrix of the bone resulting in osteoporosis or osteopenia can all be side effects of prednisone. Osteoporosis and related fractures are one of the most serious adverse effects of long-term glucocorticoid therapy. The American College of Rheumatology (ACR) currently considers patients receiving or planning to receive greater than 2.5 mg of prednisone daily for three months or longer to be at risk for bone loss (Glucocorticoid-Induced Osteoporosis).

A high protein diet may help to prevent adverse effects associated with protein catabolism. Calcium and vitamin D supplementation and weight-bearing exercise that maintains muscle mass are suitable first-line therapies aimed at reducing the risk of adverse bone effects.

I had a Dexascan in 2018 which showed slight osteopenia in my hips. It surprised me because I’ve always been pretty active and wasn’t on a high dose of prednisone at the time (I was nursing my second son at the time which may have contributed). I’ve since increased my calcium and vitamin D and my weight lifting. My insurance covers another scan this December, so we will see if it worked!

I also remember when I was on 60 mg, the pain in my lower back and knees was so bad I would wake up at night and not be able to sleep. 

Ocular Effects

As many of us with uveitis know, the treatments often involve the side effect of cataracts and increased intraocular pressure. Prolonged use of prednisone may result in posterior subcapsular and nuclear cataracts  and/or increased intraocular pressure (IOP) which may result in glaucoma or may damage the optic nerve if left unchecked. 

Nervous System Effects

Side effects of prednisone include insomnia, mood swings, and depression. I tend more toward the “intense” side of personalities at times (hey, I’m a Scoprio.. what can I say?!) and when I’m on higher doses of prednisone I have to consciously remind myself to tone it down a little. Especially when I haven’t slept much due to high doses; I usually notice trouble sleeping when I’m on 20 mg or more. Another side effect I’ve noticed, but don’t generally read in the literature is feeling warm all of the time, which can also impact mood and sleeping. Altering your sleep schedule (can you fit in a nap?) based on when you sleep best can help as well as just giving yourself down time and plenty of grace… and space.. from other people (sort of kidding). 

Endocrine and Metabolic Effects 

Prednisone may decrease glucose tolerance, produce hyperglycemia (high levels of sugar in the blood), and aggravate or precipitate diabetes mellitus, especially in predisposed patients. If glucocorticoid therapy is required in patients with diabetes mellitus, it may be necessary to change insulin or oral antidiabetic agent dosage or diet. Read What is the link between prednisone and diabetes?

The increased requirement for insulin, accompanied by potassium loss, sodium (and fluid) retention and increased appetite often lead to weight gain when uncontrolled. Monitoring carbohydrate and refined sugar, and sodium intake can help with these side effects. See the Prednisone Friendly Diet from Stop Sarcoidosis and Prednisone Weight Gain by Dr. Megan, Prednisone Pharmacist, who has really great info on her site.

Patients with hypothyroidism may have an exaggerated response to glucocorticoids. Glucocorticoids can lower serum TSH levels and decrease TSH secretion through direct effects on TRH in the hypothalamus. Chronic use of high dose glucocorticoids do not appear to cause clinically significant central hypothyroidism (Haugen, 2009).

Sodium retention with resultant swelling, potassium loss, and elevation of blood pressure may occur, but is less common with prednisone. Along with swelling is the less-than-fun phenomenon known as “moon face.” Read Embrace Moon Face and supplement potassium.

Dermatologic Effects

I’ve always struggled with acne, but let me tell you that prednisone acne is real. When I was on 60 mg, I literally bought turtle necks and wore them all the time because my neck and chest were so broken out (luckily it was winter). Prednisone impairs wound healing (remember, it’s telling your immune system to chill out) which can make acne last longer. 

Prednisone also thins out the skin which can cause you to bruise more easily (Bruising for No Reason? It Could Be Due to These Medications). 

So there you have the (abbreviated) long list of side effects of the miracle drug that is prednisone.

Next month I’ll talk about interactions, tapering and withdrawal, touch on pregnancy on prednisone, and COVID-19 risks on prednisone. 

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

Uveitis, Race and Disparity in Healthcare

2020 has been one big flare. My uveitis is not yet under control. (See Coping When a Treatment Fails Post.) I’m on a pulse of prednisone, an increased dose of Cellcept and just administered the second injection of “Starter pack” of Humira into my thigh (by the way, “Starter Pack” makes it sound so much more fun than it was… but it was pretty easy). I lie awake at night. Is it the medication keeping me up? Is it not knowing how my son’s introduction to kindergarten will go with COVID-19? Is it the ugly refusal of so many to see the Black Lives Matter movement as a long-overdue human rights issue? It’s some weird half-dream conglomeration of all of the above.

I have the privilege of having access to excellent health care and insurance coverage from two jobs (my husband’s and my own) that afford me clinic visits, fundus photography, and medication. Without these things, this flare may have led to a road that I don’t let my mind go down.

So, let’s dig in a little bit to race, uveitis, and socioeconomic disparity in access to ophthalmologists. As always, this is by no means a complete analysis. It’s just me doing some research while my kids are asleep to initiate thought and highlight areas others might want to deep dive or at least consider.

Uveitis Patients and Race

From what I could find, there seems to be a number of epidemiological studies done on the race and ethnicity of uveitis patients throughout the US, each with limitations (typically sample size. or geographic area).

In an assessment of the relationship between demographic and other clinical risk factors, 5,106 United States residents self reported uveitis. The corresponding 2009-2010 population of uveitis patients would be 37% white, 29.6% Hispanic, 2.2% African American and 11.1% “other.” 

“[This] analysis of ethnicity did not reveal any specific ethnic group predominance, which may be partly due to the small sample size or a true lack of correlation. [The] results contrast with other studies that have shown slight group differences, including the Pacific Ocular Inflammation Study which found a higher incidence of uveitis in the white population when compared with Asians and Pacific Islanders. Furthermore, Nguyen et al. reported a higher incidence of uveitis in African American patients with inflammatory bowel disease in comparison with Caucasian patients” (González, Marta Mora, et al., 2018).

A chart review of patients seen between 2007 and 2010 (inclusive) at a clinic in Birmingham, Alabama found that the breakdown of uveitis patients and causes varied between race: “Among African Americans with uveitis, females are more likely to be affected than are females of Caucasian ethnicity, though Caucasian females are still more likely than Caucasian males to have uveitis. African Americans are more likely to have panuveitis while Caucasians are more likely to have posterior uveitis” (Read, Russell W., et al., 2012).

Another study demonstrated increased severity of poor visual outcome in non-Hispanic African American children who may, in turn, need to be treated early and more aggressively with systemic therapy. The increased disease severity noted in the non-Hispanic African American children could be secondary to biologic differences or variance in health-care access (Angeles-Han, Sheila T, et al., 2015).

Outside of uveitis, it is documented that different ocular conditions are more common for specific races (Shital Mani, O.D., 2009 and AAO.org, 2012):

  • African Americans: Primary open-angle glaucoma (POAG), Hypertension and hypertensive retinopathy, cataracts
  • Asians: Primary angle-closure glaucoma (PACG), Vogt-Koyanagi-Harada (VKH) syndrome (associated with panuveitis)
  • Latinos: Glaucoma, Diabetes and diabetic retinopathy Pterygium
  • Whites: Age-related macular degeneration (AMD), Uveal melanoma 

Predisposition to glaucoma and hypertension would be something to factor in during treatment for uveitis, as intraocular pressure is a side effect of steroid treatment. African American adults have been reported to have increased hypotony and a 2-fold increase of incident glaucoma in those randomized to implants or systemic therapy. (Angeles-Han, S. T., et al, 2015)

“While we sometimes forget that race can often mask many social and economic factors that influence health status and health care delivery, we should still be mindful that ethnicity and race can also suggest very important clues to disease diagnosis and treatment. As always, consider the patient’s individual condition in light of your knowledge and experience.

Shital Mani, O.D., 2009

Disparity in health care

The incidence of blindness due to uveitis and related complications is reported as 25% in India and other developing countries, whereas the incidence of blindness is thought to be 10% or less in Europe and the United States. This disparity in blindness between developing and developed countries could be due to differences in socioeconomic conditions or access to medical care. However, it is also thought that the etiologic differences (the cause of the uveitis itself) could play a role in the high levels of blindness that occur in developing countries. Infections are the leading cause of uveitis in developing countries, whereas non-infectious (likely autoimmune caused) uveitis is the leading cause in the United States and developed countries (Rao, N. A., 2013). 

Again, correlation does not equal causation. However, whether vaccinating against diseases that cause uveitis or treating complications of non-infectious uveitis, access to healthcare is a big deal. 

In a study of 2,395 Blacks and 2,913 whites, 40 years of age and older in East Baltimore, it was concluded that “the pattern of blindness in urban Baltimore appears to be different among Blacks and whites. Whites are far more likely to have age-related macular degeneration, and Blacks to have primary open-angle glaucoma. The high rate of unoperated cataracts among younger Blacks and among elderly subjects of both races suggests that health services are underused. Half of all blindness in this urban population is probably preventable or reversible” (Sommer, Alfred, et al.,1991).

A paper assessing the current and future status of diversity among ophthalmologists in the workforce stated that, “racial and ethnic disparities in eye care are still prevalent in the United States. A higher proportion of blindness among minorities, an increased prevalence of glaucoma in Black individuals and Hispanic individuals, and a decrease in the number of minorities who have undergone surgery all point to the need to eradicate these disparities. Moreover, a geographic maldistribution of the US physician workforce is common and has important implications for patient access to routine and specialty care” (Imam M. Xierali et al., 2016). Furthermore, this paper concluded that “Female, Black, Hispanic, and native representations in the ophthalmologist workforce were substantially lower than that of the US population in general and medical students in particular.” 

Thus, health care access can take many forms, including reasonable transportation to a medical facility, healthcare insurance coverage, access to medical supplies and medication, and having the option of having a doctor that looks like you do. 

According to Ryan Huetro, M.D., whose study was highlighted in “Health Inequality Actually Is a “Black and White Issue”, Research Says” of Michigan Health News, reported that “Mounting evidence suggests when physicians and patients share the same race or ethnicity, this improves time spent together, medication adherence, shared decision-making, wait times for treatment, cholesterol screening, patient understanding of cancer risk, and patient perceptions of treatment decisions. Not surprisingly, implicit bias from the physician is decreased.”

As with most scientific research and social issues, a lot of important work remains. This includes studies on the epidemiology of uveitis and other eye diseases (and what it means) and work on the healthcare disparity among races and socioeconomic classes. Acknowledgment seems to be the first step. Because “when you don’t see color, you can’t see patterns” (James Early Art Design)… and determining patterns can aid understanding and prompt development of solutions.

Related articles:

Racism and discrimination in health care: Providers and patients. (2017) Harvard Health Blog

Health Disparities Data (2020) Healthypeople.gov

Minority Eye Health: Know Your Risks (2012) American Academy of Ophthalmology News

An End to Disparity: Ophthalmology needs a diversity boost – and minority mentoring programs could be the key (2020) The Ophthalmologist

High-risk Populations for Vision Loss and Eye Care Underutilization: A Review of the Literature and Ideas on Moving Forward (2013) Survey of Opthalmology 

The Role of Ophthalmology Departments in Overcoming healthcare disparities (2016) J Epidemiol Res. 2016; 2(1): 25–28.doi: 10.5430/jer.v2n1p25

Sources:

Angeles-Han, S. T., McCracken, C., Yeh, S., Jenkins, K., Stryker, D., Travers, C., Rouster-Stevens, K., Vogler, L. B., Lambert, S. R., Drews-Botsch, C., & Prahalad, S. (2015). The Association of Race With Childhood Uveitis. American journal of ophthalmology, 160(5), 919–928.e1. https://doi.org/10.1016/j.ajo.2015.08.002

González, M. M., Solano, M. M., Porco, T. C., Oldenburg, C. E., Acharya, N. R., Lin, S. C., & Chan, M. F. (2018). Epidemiology of uveitis in a US population-based study. Journal of ophthalmic inflammation and infection, 8(1), 6. https://doi.org/10.1186/s12348-018-0148-5

Imhoff, Jordyn. “Health Inequality Actually Is a “Black and White Issue”, Research Says. The University of Michigan, Michigan Health News. Lifestyle, June 03, 2020

Rao N. A. (2013). Uveitis in developing countries. Indian journal of ophthalmology, 61(6), 253–254. https://doi.org/10.4103/0301-4738.114090

Read, Russell W., Kinley Beck, Carrie Huisingh, Gerald McGwin, Jr.. (012) Ethnic Disparities in Uveitis in the Southeastern United States. Invest. Ophthalmol. Vis. Sci., 53(14):1249

Shital Mani, O.D. “What’s Race got to do With It?” Review of Optometry Vol. No: 146:06Issue: 6/15/2009

Sommer, Alfred, James M. Tielsch, Joanne Katz, et al. (1991). “Racial Differences in the Cause-Specific Prevalence of Blindness in East Baltimore.” N Engl J Med,  325:1412-1417. DOI: 10.1056/NEJM199111143252004

Xierali IM, Nivet MA, Wilson MR. Current and Future Status of Diversity in Ophthalmologist Workforce. JAMA Ophthalmol. 2016;134(9):1016–1023. doi:10.1001/jamaophthalmol.2016.2257

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

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.