I Ignored My Autoimmune Disease Symptoms—and Made It Worse
John Montemarano, 55, began to notice symptoms of psoriatic arthritis and psoriasis when he was in his early 40s. But he ignored the pain and discomfort out of embarrassment and fear of having to give up his active lifestyle. As a result, he learned the hard way that an untreated disease can be much worse than any potential side effects of medication. Now, he's better about getting medical care when he needs it.
I first started to notice a rash in my groin and anal area when I was in my early 40s, but I thought it was just jock itch. I didn’t tell my doctor because I was embarrassed. I kept doing everything I'd usually do, like going on trips with wife. I’ll tell you, jumping in the salty Caribbean ocean with basically open wounds on your groin is not a pretty sight!
I was finally diagnosed with psoriasis when I was about 48. My wife urged me to get a full physical because I have had sarcoidosis—an inflammatory condition that can affect many organs in the body—since I was in my 30s. The urologist took one look at my "jock itch" and told me I had psoriasis.
Around the same time the rash started, I was also having joint pain, especially in my knee. Since I've always been very active, it was easy to blame my pain on normal wear and tear or osteoarthritis. But I had a hunch it could be psoriatic arthritis; I’d Googled "joint pain" and "skin rash," and that was the first result that came up.
Once again, I avoided bringing it up with my doctors. I was afraid of the heavy-duty medications I might need and the side effects they could cause, such as fatigue. And I was also scared of simply being told I had psoriatic arthritis. Instead, I tried to self-medicate my joint pain with alcohol.
Finally, an official diagnosis—and treatment
But the pain became so unbearable that I couldn’t sleep at night. My arms and hand would go numb—it was excruciating. I had to sleep in the spare bedroom because I’d move around during the night, frequently shaking my arms to get the feeling back. When I gave in and told a rheumatologist about my symptoms, I immediately was diagnosed with psoriatic arthritis.
I’ve now been on medication since 2009, and I can say that any side effects it's caused are nothing compared to the joint pain I was experiencing before. Sometimes I forgot just how bad my symptoms were. My medication has also made my psoriasis go away. Still, it hasn't exactly been a cure-all. It doesn’t work as well as it did at first, and my doctor and I have already changed the dose from every other week to weekly. And when I have a bad flare, I don’t know when it will go away or subside. My only other option would be to try a different medication, but I'm concerned that if I do, my psoriasis might return.
Adjusting to a less-active lifestyle
There are still times when I avoid getting medical care. I often tell other people not to play doctor, but I need to follow my own advice. For example, I hurt my left ankle a few years ago. It was made worse by the fact that I don't want to give up the activities I love, like playing racquetball and going on walks with my wife every day—I feel bad that I can’t do as much with her now. I should have gotten an MRI of my ankle immediately, but I waited a year, and by then there was a lot of damage.
Fortunately, doctors recommended platelet-rich plasma therapy, and after two treatments, I feel like my ankle is almost 100% again.
But I'm proud that on other occasions, I sought medical help more promptly. Four years ago, I was getting so exhausted that I couldn’t think straight or even put a sentence together by noon on some days. My doctors assumed it was related to the medication or psoriatic arthritis itself, but I thought there was more to it. I reached out to a new doctor who did more blood work, and found out I had increased levels of the hormone prolactin. It turned out that I had a benign tumor in my pituitary gland that was leading to low levels of testosterone—and it wasn't at all related to my psoriatic arthritis or the medication I was taking. I started taking a new medication to bring down my prolactin levels, and I've had more energy as a result.
I feel grateful to have had an understanding employer
When I was diagnosed with psoriatic arthritis, I was a director for the New York City public transit system and could modify my workday so I didn’t have to walk around as much. I also had a great staff, and we helped each other out.
I don’t know how people do it if they have jobs that require them to be more active, such as cops, firefighters, or construction workers. I’d suggest talking with your employer to see if you can take on different tasks that require less heavy lifting. See if you can adjust your work schedule and meetings around the times that you are most tired.
But it's not just the workplace—many aspects of society should be more supportive of people with disabilities. Even though I have pain all over my body, you really can’t tell from looking at me. So people are sometimes surprised when I have to limit my activities. I have to be careful not to pull or aggravate a tendon or muscle, because if I do, the pain will last so much longer than for healthy people. I wish more people would understand that you can look outwardly healthy, but still have a condition like psoriatic arthritis that makes certain activities challenging.
As told to Carina Storrs