Letting Go of My Psoriasis Medication
As I write this I’m on my way to Washington D.C. for the National Psoriasis Foundation’s annual Capitol Hill Day. This short trip takes me a few days to pack for. I need to make sure I have all the moisturizers, medications, professional attire, and cold weather gear for such a meaningful trip. I even schedule my phototherapy treatments a week ahead to make sure I can take one last treatment just before leaving for the airport.
The other day, when I looked in my medication drawer for an asthma inhaler to pack, I saw four 100 mg cyclosporine pills individually wrapped together. I noticed the May 2019 expiration date and put it back, not quite ready to let it go.
My love/hate relationship with cyclosporine
My cyclosporine story is a longstanding love/hate relationship. I love cyclosporine because it manages both my psoriasis and eczema as well as any medication or treatment I’ve ever used. When a medication failed to curb my skin inflammation effectively I knew I could always go back to cyclosporine. When I traveled on trips like this one to Washington D.C. I could take a few extra pills with me to treat potential flares due to travel.
However, I hate the adverse effects I experienced with cyclosporine. Even on lower doses I couldn’t manage my blood pressure well with only diet and exercise. Worse yet, I couldn’t tolerate the blood pressure medication my doctor prescribed to keep it at a normal level. I also began to see my kidney function blood test number slowly rise.
For about a decade my dermatologists desperately wanted to get me off cyclosporine but we couldn’t find anything to take its place. Finally, last year, I started taking a new biologic that worked well enough to do so. I’ve stopped cyclosporine for over a year now. My blood tests are mostly normal as is my blood pressure, but I miss how well it controlled my skin conditions.
The cost of clearer skin
Nothing on the cyclosporine label says it is addictive in any way. Still, I became accustomed to the clearer skin while using it. I liked that I could take a few extra pills when flares came my way. I could do more than I dared to do before, such as travel, without the fear and anxiety that usually accompanied certain activities. I felt more productive, ramping up my blogging and writing, while still able to accomplish what I needed at my job.
I knew deep down, though, that the cyclosporine love affair needed to end. The doctors reluctantly allowed me to take it if I agreed to take breaks and my blood test results remained normal. Whenever they suggested something else to try I told them I didn’t want to or that I’d tried it before. We waited for over a year for the new biologic to become available, then a couple more months before completely tapering off cyclosporine.
Breaking up is hard to do
Like a complicated relationship that needs to end, breaking up with cyclosporine took time and emotional work I did not anticipate. Anything that relieves me of psoriasis is something I welcome into my life with open arms. If the medication works effectively I’m even willing to live with the hassles of insurance and the potential adverse effects.
But when it’s over, it’s over. My dermatologist told me I could go back to using it if I ever needed to. I think, however, she partially said that so I would finally let go. When I asked about cyclosporine in a recent clinic visit she deftly directed me toward other options, saying we should still keep it as an emergency option.
I’m confident I won’t take cyclosporine again save as a short-term solution to calm down a terrible flare. I’m glad, though, for my doctor’s caution. I know it’s not good for my overall health in the long run, however much I like what it does to suppress my skin inflammation.
I finished packing for the Washington D.C. trip on a Sunday late morning after church. With one last phototherapy treatment completed, and my laptop snugly in my backpack, the time came for me to leave for the airport. I grinned when I saw those four cyclosporine pills sitting on my desk—not to be opened on that trip or anytime soon. Leaving them behind I closed the door ready for my next adventure.
How often do you experience brain fog?