Coping when a treatment fails

Photo by Steve Johnson on Unsplash

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Immunosuppressed in the Pacific Northwest

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

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

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

Avoidance – Social Distancing

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

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

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

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

Treatment Plan – Medications

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

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

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

Diet and Supplements

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

Boost the body’s natural detoxification systems with:

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

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

Organic green tea in the morning instead of coffee

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

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

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

Bioflavonoids which are found in berries and citrus fruits

Celery to increase urine flow and aid in detoxification

Cilantro 

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

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

Burdock root 

Chlorophyll found in dark-green leafy vegetables and in wheatgrass

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

Supplement with Vitamin C. 

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

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

Sleep

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

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

Lifestyle

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

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

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

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

Related links:

UW Medicine COVID-19 Patient Question and Answer Page

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

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

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

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

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

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

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

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

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

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

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

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

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

Related reads:

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

What People With Invisible Illnesses Want You To Know