“It’s like rain on your wedding day
It’s a free ride when you’ve already paid
It’s the good advice that you just didn’t take
Who would’ve thought… it figures”
12/7/2013: In between appointments at Johns Hopkins Thursday, we picked up my first refill for the cyclosporine 1% eye drops. They have to be compounded specially by one of the outpatient pharmacies there. Recall these are the “miracle” drops I talked about last post. I told the tale of being allergic to inert ingredients in Restasis a few times throughout the day to staff updating my medication list. Believe me, after the two-year struggle with irritated eyes and blurred vision, I was very excited about this discovery and apparent solution.
Fast forward to Thursday night. One drop in each eye from the fresh, new bottle, as I’ve done with the old since October 21. WHOA! That burns like crazy!! What’s going on?
I remove the old bottle from the trash to compare. Each eyedrop bottle is delivered packed in one of the regular amber plastic pill bottles. Prescription labels match: “c-cyclosporine 1% ophth solution Place one drop in each eye nightly.”
I next examine the new eyedrop bottle. It’s smaller than the old wrapped in a stick-on label with Johns Hopkins, batch number, date, and c-cyclosporine 1%. I peel the label and see Artificial Tears commercially printed directly on the bottle. This makes sense as I was told this is what they use for a compounding base. However, the old bottle is not the same. It’s a generic clear plastic bottle with just the stick-on label with Johns Hopkins, batch number, date and c-VFEND 1%.
I had noticed the word “VFEND” before but thought it was a stock number or generic name so hadn’t paid much attention. After seeing the difference in the new label, however, I looked it up on the internet. To my surprise and horror, I discovered VFEND is an antifungal drug used to treat a specific type of corneal infection that I’ve never had. The pharmacy filled my original prescription incorrectly back in October! I’ve used the wrong medication for six and a half weeks.
It’s midnight when I realize this but I leave a lengthy message for my ophthalmologist using the Hopkins patient portal, explaining what has happened and asking to see her as soon as possible. I want to assure no harm has been done by unknowingly using the wrong prescription and having stopped the Restasis/cyclosporine abruptly with no tapering. If all is okay, I don’t want to resume either the Restasis or stronger cyclosporine compound.
Fast forward another 12 hours. I skipped the morning dose and hopped in the car to drive cross town for a vet appointment with my cat. My eyes started burning and my nose running profusely. This is the same thing that had been happening in early October, driving to Hopkins for my phototherapy after my morning Restasis. Only this time, it was much worse. By the time I left the vet, the pain was excruciating. I pulled to the side of the road a couple of times to try flushing my eyes with over the counter drops. Finally, I made it home and rinsed with cold tap water until the pain subsided. My eyes remained swollen, red, and sore the rest of the day. They’re fine again now after another night’s sleep and no more cyclosporine.
The funny thing is that I questioned both the pharmacy and the doctor on those drops in October when they didn’t burn or irritate my eyes. It seemed too good to be true. But after reassurances from both, I was convinced that the prescription was correct. Because I did my questioning via phone and email, and no one else asked me the right questions, the VFEND label was neither noticed nor discussed.
I see my ophthalmologist Friday and will figure out what to do from there. It will be difficult for anyone to persuade me to use any kind of cyclosporine in my eyes ever again. I need to file a formal complaint about the pharmacy error. Medication errors could have very serious consequences.
Will let you know how it all turns out!