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.

Stick a needle in my eye: intravitreal steroid implant injection tutorial

This is when you start being offended by the phrase “I’d rather poke myself in the eye with a sharp stick/pencil/needle” or whatever iteration you hear. You don’t think it’s a common phrase until you start getting poked with a sharp needle in your eye to attempt to save your vision. Then you seem to hear it all the time. And you won’t joke about it or wish it on anyone. Cross my heart and hope to die… you know the rest.

An intravitreal steroid implant injection is a treatment for posterior uveitis during which an implant with corticosteroid is injected into the vitreous (clear gel part) of the eye. It’s a shot right at the target (localized) and allows the rest of the body to be spared side effects of high doses of steroids. Often implants are done in conjunction with lower doses of systemic medication.

The intravitreal implant technology is a relatively new advancement; the first implant was approved by the Federal Drug Administration (FDA) in 2009. The capsule design facilitates the sustained release of steroids, which allows for more time in between injections, theoretically. Realistically, every patient’s eye reacts differently to the treatment. One downside to these implants is that there is no manner of knowing when the implant has actually run its course and is no longer releasing medication.

Before intravitreal implants, corticosteroids were injected into the periocular space (around the eyeball). Now, with the implant injection into the vitreous, the lack of fluid flow in the vitreous humor leads to a higher concentration of the steroid, which is effective for inflammation control (https://www.ondrugdelivery.com/sustained-drug-delivery-posterior-segments-eye/).

However, increased ocular pressure and cataracts are almost unavoidable side effects of intravitreal steroid implants. Infection and retinal detachment are risks of the injections. Read more about side effects and complications of treatments here.

I’ve had eight intravitreal injections. Five in the left eye (Ozurdex and Iluvien) and three in the right (Iluvien, Ozurdex and, most recently, Yutiq). This is my experience and these are my tips.

Intravitreal implants are administered via in-office procedures that can be planned or immediate depending on the case and the patient’s insurance.

Injectable intravitreal steroid implants for uveitis include the following:

Ozurdex contains .7 mg of dexamethasone. The implant is 6mm long and .46mm in diameter. It biodegrades into lactic and glycolic acid. It is injected with a 22 gauge syringe and is projected to disperse steroids for around six months with a peak concentration at two months. Ozurdex was approved by the FDA in 2009 for “noninfectious uveitis affecting the back segment of the eye.”

Iluvien contains .19mg of fluocinolone acetonide. It is injected with a 25 gauge syringe and is projected to disperse steroids for 36 months (three years). This injection is indicated for diabetic macular edema. Iluvein was approved by the FDA in 2014.

Yutiq contains .18mg of fluocinolone acetonide with an initial dispersal rate of .25mg. It is 3.5mm long.  It is injected with a 25 gauge syringe and is projected to disperse steroids for 36 months (three years). Yutiq was approved by the FDA in 2018 for “treatment of chronic non-infectious uveitis affecting the posterior segment of the eye”.

Check out the individual product manufacturer websites for financial assistance if your insurance isn’t going to cover the procedure and device. You will need it. Bills for the injection and the visit run about $13,000 when billed through insurance in my experience. Your doctor’s office billing department should be able to assist or, hopefully, handle the whole process.

Don’t be afraid to ask for a prescription for valium or some type of relaxant to take ahead of time if you’re anxious (unless you’re pregnant or breastfeeding). I find that meditation and yoga practice in my daily life help manage my anxiety during injections.

Make sure to arrange for someone to drive you home after the injection.

The care team will begin by marking your forehead above your eye and confirming the eye and the injection. Cleaning of your eye, lid, and lashes comes next by way of drops. My doctor’s office uses numbing drops and a numbing gel, which is heavy and sticky but does the trick!  If you feel any stinging with the drops, tell the assistant or doctor and get more gel!

One of the worst parts (maybe the worst in my opinion) of the entire procedure is the eye speculum. This is the metal retractor that holds your eye open. Something that has helped the comfort of the injections for me immensely is that my doctor smushed down the speculum so it didn’t open so wide. If you have a smaller face, perhaps request a pediatric speculum or ask your doctor to reshape this device to the least possible width needed for the procedure.

Blink and the doctor places the speculum. Now is the time to start your deep breathing or relaxation technique. Focus on relaxing your face; tensing up and increased blinking will make the speculum more uncomfortable. 

Depending on the gauge of the implant injection needle, your doctor and your preference, your doctor will now inject medication into your eye to numb it. This hurts even with the numbing gel. Look where your doctor instructs. Breathe. Unclench your fists and go to your “happy place.”

Next comes the actual implant injection. This can feel like a lot of pressure on the eye depending on the injection. Ozurdex has a definite “click.” Yutiq seemed to require more pressure than Iluvien in my experience.

More than likely, your injection site will bleed (hemorrhage), especially if you opt for the numbing injection. One of the first injections I received bled so bad the blood spread throughout my entire eye. I stayed home from work. My husband and I had a snowboarding trip already planned that weekend with friends and I deleted the photos.

In addition, I was unprepared for all of the stares and flat out rude comments I received. It made me thankful for once to have posterior uveitis that normally is unseen (folks with Anterior or Panuveitis are probably used to this!). References people that I had never met made to physical or domestic abuse astounded me and still does when I get injections! So, decide ahead of time how you would like to react or not react to any comments that come up. I don’t even waste my breath on a response to comments or questions that are off-color or cruel.

I have found that putting an ice pack on the eye repeatedly for about 20 minutes at a time significantly decreased the bleeding and swelling for me. Make sure to rest the eye that day even if you don’t feel like it’s necessary. Take over-the-counter medication for pain or headaches.

The following survey was conducted with folks who get injections far more often than I, but I agree that injections can bring on anxiety and headaches. Survey: Intravitreal Injections Linked to Discomfort, Anxiety

Last, but not least, be diligent about any follow-up medications or drops your provider has prescribed.

Now, move about your life knowing that you are a badass who can handle getting a needle or two in the eye.

Medline Plus’s Version: Intravitreal injection