In physical therapy, we had been trying for some time to work on the plantar fascia regions of my feet. Many of the ligaments and fascia in my body are overly taut, and stretching is not very successful. In May 2017, quite suddenly, without doing anything in particular, I simply took a step. Suddenly the most excruciating pain shot through my right foot and heel, traveling from the end of the arch across the pad of the heel and up across the Achilles’ tendon.
Unable to hobble except by putting the lightest pressure on the outer-most edge of my foot, I had a non-traumatic rupture of the plantar fascia. (“Non-traumatic” – meaning it simply ripped, there was no underlying injury. It was probably the result of the steroids weakening connective tissues throughout my body.)
My podiatrist, Dr. F.S., commiserated, saying it was an unpleasant time of the year to be in the “boot.” But I would need to stay in it pretty much 24-hours a day for about a month, and off my feet almost the entire time – no PT, no sitting without it propped up high to reduce swelling. Ye, gads. But after a month, there was absolutely no improvement.
More misery
Then while I was attempting to stay home and off the damned foot in mid-June, I found my eyes were itching a lot. Putting it down to allergies, I started my prescription eyedrops, but they, unusually, burned quite badly when I put them in. So badly, I ended up using some artificial tears to wash it out. My eyes were quite pink, which I put down to the reaction to the drops. Maybe I had rubbed them without realizing it.
I used more of the artificial tears later in the day and before bed. The next day, they were still pretty red, so I used the artificial tears repeatedly for the next three days. But they weren’t getting any better, so I thought perhaps I had pink eye. I looked up the symptoms and treatment, and added cool compresses. Bought some gel artificial tears, since I knew it would likely last at least a week.
Late in the afternoon on the Friday before the Fourth of July weekend, my eyes looked like someone had poured tomato soup in them. They felt gritty and painful, and were very sensitive to light. I decided to call for an emergency appointment at the eye clinic at MFA Monday morning.
Dramatic worsening of sight
But by Saturday morning, I noticed I was having trouble focusing them to read. I’m one of those weird people who read the ingredients on cereal boxes if there’s nothing else to read. This was very concerning. Saturday night they hurt to watch TV. I started wondering if I should go to the ER.
I kept telling myself I was being a baby, and that ERs were for people with real emergencies, like strokes, or heart attacks. Not eye infections. Monday morning I went to the eye clinic and was there when they opened at 7:30. In the cornea clinic, I was told I had two corneal ulcers, in all likelihood caused by the zoster virus – the infamous shingles virus I’d had the vaccines to hopefully prevent.
I also learned there’s a 24-hour emergency eye clinic at GW. I should have gone to the damn ER!
Before they could heal the first ulcers, I developed another one in the other eye. We went through several different medicines before accepting that the best, most effective and probably fastest acting was – you guessed it – a steroid eye drop. For four months I went into the clinic while they monitored the healing. Initially it was a couple of times a week, then once a week. The first month also came with strict instructions – absolutely no computer, no reading AT ALL. I could watch TV, but needed to rest them periodically.
No reading
That summer of 2017 was not much fun. Gigantic boot on my right foot/leg, that I was supposed to keep propped up at all times, because the plantar fascia was still not healing. No reading. No getting out and doing much. Whine, whine, whine. At least nothing was wrong with my LUNGS!
After four months with no improvement on the foot, my podiatrist did some research to figure out what was going on. Drum roll … non-traumatic plantar fasciitis was sometimes found in patients with steroid myopathy, despite the fact that I hadn’t required any oral or IV steroids in months. Damn! Another long-term problem to watch for!
She did a needling procedure and then I was kept in bed for a month, except for medical appointments, but that did the trick. (I even set up a toaster and cooler next to my bed so I could toast bagels and make simple bagel sandwiches. Didn’t have another bagel for nine months after that.)
The eyes eventually healed pretty well. I asked the corneal specialist if I would risk losing my eyesight if I stayed on the Nucala. He said I’d need to weigh that risk, but he thought they could monitor and treat them as the ulcers began instead of once they became established, using the steroid eye drops as necessary.
No eos improvement
My asthma was doing better, but the eosinophil levels were still going through the roof, and we still didn’t know what they were attacking. I spent weeks studying and talking to my team and other doctors, but decided staying on Nucala was worth it.
Almost immediately, we heard Fasenra (benralizumab) had been approved and would be available in December 2017. There needed to be a couple of months between Nucala injections and Fasenra. But, of course, being me, as soon as we stopped the Nucala, I immediately began having back-to-back asthma attacks.
Not status asthmaticus, but a week or so between finishing one course of prednisone before another attack would hit and we’d have to begin again. After six months, I was discouraged, the myopathy was substantially worse, and my pulmonologist, Dr. MD, wanted me to have another complete work-up.
That test result answered one question – the eos evidently had been attacking my lungs.
Eos infiltrates in my lungs
I now had emphysema, despite not a single risk factor for it, except the eosinophilia. At least it appeared in the early stage, 2, so the damage was not yet extensive. But emphysema is emphysema. When lung cells die, they cannot be regenerated. As a child, I had watched my grandfather die of it.
The decision about Fasenra was pretty easy for me, but my medical team was split on it.
Finally, I persuaded the holdouts with a simple argument.
1. I could go back on the Nucala, at some risk to my eyesight and with the other biologic risks. But with nothing hampering the HES, more probable damage to my lungs and whatever other organs the eos decided to attack.
Or
2. I could try the Fasenra. Fasenra came with the same general biologic risks, but no risk to my eyesight. And we would know pretty quickly if it was going to reduce my eos loads. If it stopped the eos, as far as anyone knew, it would stop whatever damage those damn white blood cells were creating anywhere in my body. ANYWHERE. There was a three-month treatment period, one injection per month, then maintenance of one injection every eight weeks. Forever.
I told them I was willing to take the gamble. I wanted to see if it could reduce the eos load, even by half, during the three-month treatment period. Then we’d reevaluate.
Another thing about Fasenra is that while it stops eos production in the blood, it doesn’t affect the ability to produce eosinophils. If at some future time there is a need for them, the Fasenra could be stopped, and production would resume.
A bet I’ll take
Two doctors I talked to weren’t sure they even believed in categorizing eosinophilia as a disease, much less as a trigger. One said he thought it was a great way for a pharmaceutical company to create a whole new buzz, and make an obscene amount of money doing so. I could understand the points.
Dr. VL was more concerned about the risks. But I told her, I told all of them, the absolute truth – my mantra for family and friends:
This is a gamble. But every single day that’s better is a gift I didn’t expect to get. If something happens – if today I have an anaphylactic reaction, or get hit by a bus outside my building – IT HAS BEEN WORTH IT! And I hope you will all be as grateful as I am for those better days. Whether I got 10 of them, or 10,000.
Dr. VL said okay, and put in the order. In June 2018, I got my first injection. Two weeks later I had a blood test to check my eos level. We would repeat the test two weeks after each injection for the next three months.
That first eos level?
Zero.
Next month?
Zero.
Third month?
Zero.
And every injection since, every month since, my eos level has been zero.
I don’t know about you, but to me, that’s about as close to a miracle as I am likely to ever see.
