My Life with Asthma: Medication Induced Cushing’s Syndrome
My journey to Cushing’s began in gym class. I was 12 years old and was assigned to run the 400-meter sprint in a track meet. This wasn’t a great fit for someone with coughing fits when I ran. While practicing, I collapsed from coughing and passed out. My mother and doctor suspected a heart issue because I didn’t have wheezing, a classic asthma symptom. A full cardiac workup (by 1974 standards) showed that my heart was fine and I was told, “You’re just trying to get out of gym.” After that, I stopped mentioning any bouts of coughing or shortness of breath during gym class.
During a swimming course in college, the instructor was puzzled because even though I swam a mile every day, I couldn’t surface dive to the bottom of the pool; I would surface coughing and out of breath, but not wheezing. During my 20s, every cold turned into bronchitis with weeks of coughing, and one bout of pneumonia (again, without wheezing). Just after I turned 30 (late 1992), I had a second bout of pneumonia. Thankfully, my roommates dragged me (almost literally) to the doctor. He heard my coughing through the closed exam-room door, came in and said “you have asthma.” My response was what I had been told since age 12: “I don’t wheeze; it’s not asthma.”
I was diagnosed with the cough variant type of asthma, in which the only symptom is coughing until completely breathless or to the point of vomiting. Asthma treatment then was limited to albuterol, prednisone, and theophylline. Newer inhalers soon became available, and I tried them all. But I fell back to prednisone – the one medication that always worked. My asthma attacks grew in severity, requiring regular ER trips beginning in 1996. The ER doctors would give me 120 mg prednisone by IV, and send me home on oral prednisone with a taper over 2-4 weeks.
From 1997 through 2010, I took at least 20 mg of prednisone daily and more often at 40-60 mg as I struggled with the cycle of asthma attacks, ER visits, and prednisone weaning. I was doing nebulizer treatments every 4-6 hours and even successfully defended my master’s thesis while using my portable nebulizer, to the amusement (and concern) of my thesis advisor and panel. I earned my Master’s in Public Health and started working for the Alaska state EMS office.
Over 18 months, I gained more than 150 pounds (to a max of 410). My entire body hurt. Prednisone helped me breathe, but I couldn’t sleep. The prednisone was cheap, but I also used an expensive inhaler and nebulizer medication. Even with insurance, I struggled to pay the co-pays.
In October 2007, I went by ambulance to the ER from my job five days in a row. I was admitted to the hospital on the fifth visit. My boss came to the hospital to say it was obvious that I was no longer able to work due to the asthma. I left my job that December, moved from my home in Juneau, Alaska to a friend’s guest room in Anchorage, and filed for disability.
I continued high-dose prednisone to manage my asthma. I was denied disability twice, and finally appeared before an administrative hearing judge in 2010. The vocational rehabilitation representative told the judge that I could, “do any type of job available, but no one will hire her because of her illness.” The judge looked at me and said “approved.”
Back in the ER in July 2010, the doctor took one look and said, “You have Cushing’s Syndrome.” I said, “No, I have asthma.” She asked how much prednisone I took (60 mg/day) and how long I’d been on it (13 years), then proceeded to explain exogenous Cushing’s Syndrome and how closely I fit the profile. I left the hospital 5 days later, on 30 mg prednisone and diagnosed with exogenous Cushing’s Syndrome. All because a doctor in her residency recognized a rare disease that she remembered from medical school.
I saw an endocrinologist, who worked with my pulmonologists and primary care to get my prednisone down to 15 mg/day. That will be permanent. On top of Cushing’s, I have 17 additional diagnoses related to prednisone use: adrenal insufficiency, cataracts, glaucoma, hyperparathyroidism, hypokalemia, hypertension, hypomagnesemia, peripheral neuropathy, and restless leg syndrome.
In addition to prednisone, I take 22 other medications to manage my health and wear a medic alert bracelet. I have lost some weight with a rigorous high protein/low sugar diet, but I am still over 300 lbs. I have lost the moon face and the worst of the striae marks, but still have my “hump.” I can usually recognize a Cushing’s flare up because the hump gets bigger and the moon face comes back, even at the same weight. While many symptoms come and go, the depression and anxiety are ever-present.
Three years ago, I received a permanent IV port after my veins became harder to access. I highly encourage anyone who struggles with the constant pressure on deteriorating veins to ask about getting one. In my case, an infusion nurse called my endocrinologist directly after struggling to get access. No one is “not sick enough” or “too young” for a permanent port.
I’m resigned to life with Exogenous Cushing’s Syndrome, even though I’m not happy about it. I do the exercises that physical therapists have given me over the years, but I don’t beat myself up on days when I can’t. I use a walker and a scooter, both of which provide greater mobility than a cane. My friends are generally supportive, especially via social media and phone calls. My mother is my closest family member and she, unfortunately, still believes that “when you lose weight, you’ll be able to get off all those medications.” I try hard to keep my temper, and to explain to her the terms “permanent, total, progressive, and degenerative” on a regular basis
I know it’s long, but I’m glad to share my story with the members of CSRF. I would love to hear from others in similar situations!
Newsletter: Spring, 2017