Coping when a treatment fails
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.