Plaquenil Maculopathy

I was diagnosed with juvenile rheumatoid arthritis at the age of 13.  I thought the most difficult part of my life would be not playing in sports as much as I wanted. I could not have guessed 17 years later my life would be changed due to the side effects of medication.

I graduated from Purdue University with a degree in management and headed to Milwaukee Wisconsin to begin my career as a department store buyer.  I was living a great life travelling for work and fun.  I did not give driving or my vision a second thought.  My doctor prescribed Plaquenil in 1990.  I took this drug until 1995.  As with most RA medications of the time, it had almost no effect on the RA.  But it was used in conjunction with a number of different medications, in the hopes the right combination would eventually have the desired effect of pain and inflammation relief.  During the 5 years I was taking Plaquenil, I had my eyes examined every six months as suggested by the drug maker.

In September 1996, a year after stopping the Plaquenil, I went to work one morning and started the days as I did every day.  I pulled up the previous days sales to record on a spreadsheet.  Strangely, the lines on the spreadsheet were distorted and the numbers were jumping all over the page.  I was in a panic!!  I went to the ophthalmologist right away and the testing began.  After 2 months of testing and seeing a retina specialist, I was diagnosed with macular dystrophy, a retina disease similar to macular degeneration. 

Although it seemed to happen quickly, actually it took about 5 years for the full effect of my vision loss to become apparent.  At first, I started having problems driving at night.  I also found it difficult to read small print on a spreadsheet.  Then as the vision loss became worse, I was having difficulty travelling in airports or train stations in the cities I had to travel to for my job.  Finally in December 1999, I drove from Milwaukee to my family’s home in Indiana for the last time.  I almost ran into 2 semi trucks outside Chicago because my depth perception was so off!!

After struggling with low vision, for 6 years I made the decision to move back to Indiana to be near my family.  At this point I was still drivng in my local area only.  I could no longer drive on a highway or through a major city.  I was able to drive in my hometown until March of 2004.  I was taking my son to kindergarten and ran a red light.  Fortunately no cars were around and therefore no one was hurt.   That was the final straw for the decision to drive.  I had lost confidence and just could not imagine casing an accident that would kill someone. 

I stopped driving in 2004 and in 2006 when my license was up for renewal, I could not pass the eye test.  That was one of the most difficult days of my life.  Even though I had not really been driving for the past 2 years, it was official, I had lost my freedom.  I do not live in a large city.  There is no public transportation.  I had to walk or wait until my husband came home from work to go to the store.  Or I had to call my friends or family for “a ride” to the doctor’s office.  It was humiliating to be in my 30’s and asking for a ride.

In June 2007 I heard about Dr Windsor’s Low Vision Center and bioptic driving.  I was ecstatic for the possibility of driving once again.  I met with Dr Windsor and he had me try on the bioptic unit.  I started to cry as I read the eye chart.  It was so clear!!!  I never thought I would have the opportunity to drive again.  Once I tried the unit on, I knew my life would be different.  I could return to a normal life.  I could have FREEDOM again!!!

I took the bioptic driving classes in the fall of 2008.  Unfortunately, the process to get to drive again is a long one due to the steps that need to be taken by the state government.  I was extremely nervous for my first class, even though I had driven for 20 years.  After 5 minutes behind the wheel, it seemed like I had never given driving up.

I feel so fortunate to be able to drive again.  It truly means freedom.  I no longer have the fear of not being able to take my family to the emergency room if they need to go.  We are expecting a new baby and it gives my husband and me such a sense of relief to know I can drive when and where I need to go.  I am feeling so confident in my driving I am looking forward to a road trip to Chicago later this year so I can share in the driving with my husband.