A.S. Face 0550: Rachael Drew-Kinuthia
My name is Rachael Drew-Kinuthia and I live in Delaware. I am a 36 year old wife and mother of two boys. I was diagnosed with AS this year after several years of doctor’s appointments and misdiagnosis. I can remember vividly when things seemed to go awry. I was 20 years old and complaining of lower back pain. I took ibuprofen on a daily basis and sometimes it seemed to help. One day I started experiencing pain in one eye. I thought I had gotten something in it and tried eyewash then eye drops from the pharmacy. That didn’t work and a couple of days later my eye was bloodshot. The pain had increased and I was very sensitive to the light, even inside my house. A visit to my eye doctor showed no evidence oinfection or any other clear cut problem. I was prescribed eye drops, which helped me within a few days. Funny looking back, I didn’t even pay attention to what the script was. I went on my merry way, so to speak and that didn’t happen again for years. In the meantime, I was waking up stiff and at times feeling very fatigued. I went to my primary care doctor with my complaints. I was in my early twenties and he doubted anything serious was wrong. I was told to lose weight, which I did need to do anyway, and start physical therapy. I asked for an x ray and he reluctantly sent me. Nothing significant was seen but I was back in his office every couple of months with worsening pain.
I was prescribed Vioxx, I think it was 1999/2000. It helped some but the drug was pulled off the market and I didn’t want anything else! I struggled through the back and hip pain for months and then like magic, it went away. I couldn’t figure that out but I was happy to feel better. I started
wondering if it was in my head. A lot of doctors were telling me that it was my depression causing the pain anyway. Fast forward to 2003, I got married to a wonderful man and wanted to start a family. My dad died a couple of months later and I was very depressed. While grieving and planning the funeral, I found out I was pregnant! I was very excited but almost immediately all of the old symptoms started back up. I was dumbfounded! What could this be? Was I too stressed out with the death and now big news of pregnancy?
I suffered through so much back and hip pain during that pregnancy. I hated complaining but I was miserable and soooo tired. Some of my family members said things like, “you’re always sickly and what is it now, Rachael? Maybe you can’t handle pregnancy!” That made me keep a lot of my suffering to myself. I was already dealing with hidradenitis suppurativa, another painful illness thought to be autoimmune. I had surgery scheduled to deal with that and I dared not mention my back pain while I was at it.
I was so excited to become a mom and thank goodness for my husband’s love and support. We got pregnant again rather quickly but decided that was it for me. The flare-ups of both illnesses was too much for me to endure during pregnancy. I now had two healthy sons and couldn’t have been happier! But the back and hip pain was now accompanied by redness and pain in my eyes, only one at a time though. This would happen a couple of times a year. I had a new eye doctor who told me that these chronic bouts of uveitis were a concern to him because I seemed so healthy. I laughed and told him I only looked healthy on the outside and went on to list my daily problems. He started the ball rolling with lab work to check for various diseases like Lyme, Lupus, Rheumatoid Arthritis etc… At that time my only suspicious blood results were an elevated sed rate, very low D levels, and low blood count. With my stiffness, aches and pains I was referred to a rheumatologist. She was not helpful to me. At first, she told me to lose weight, here we go again! She prescribed vitamin D and iron. I was told to reduce my stress and try an overhaul of my lifestyle, so to speak. I decided to change my diet and began to walk and exercise at home. But I popped soooo many pills just to take a walk I don’t know how my poor stomach managed it! But I was sick of hearing about my weight and tired of not joining the family for outdoor activities.
I successfully lost over 75 pounds on my own but I still had pain. I couldn’t sleep comfortably and sometimes while performing the smallest tasks I’d have spasms or lock up stiff. I had refills of pred forte(steroid) eye drops because the uveitis would start up every few months. New symptoms started for me like the bouts of heel pain and tendonitis. I was walking on crutches or using a cane at times. And my family kept wondering why I was shorter! WHAT?! Yes, I hadn’t noticed but friends and family kept saying “you were always taller than this Rachael.” I asked about my height in my records and sure enough I had gone from 5’7 to 5’5 and 1/2. Lucky for me, the rheumy who dismissed my complaints had left the practice! A new doctor from NIH, a research hospital took over my care. The first visit that we met, he said he was so sorry no one had ever ordered additional x rays and a MRI of my pelvis/lower back. He explained that my HLA B27 was negative a couple of years ago but that didn’t mean much to
him. He also shook his head and said there were just too many clues for any physician to have ignored!
Well, my life changed on that day! I cried from the tiring frustration but out of relief too! I was diagnosed as having AS after years of thinking no one would believe anything was wrong. There’s erosion in my lower back and hips, peripheral joint involvement, recent high blood pressure and chest pain(which tipped off rheumy to possible aortic valve issues) and constant fatigue. I have been on prednisone to tide me over until lab work and tests clear me for use of a biologic. I am going back to my rheumy next week and we will be starting Humira or Enbrel. Its so crazy but you’ve never seen someone so excited over an appointment. Even with such a heavy hitter of a drug being prescribed (I hate the idea of meds) I am happy! My
husband is relieved for me because he has seen my ups and downs. He has literally carried me when I would fall to the floor because of pain in my feet. He has taken time off of work at times to help me and take care of household chores that I couldn’t do. I am hoping that this treatment will slow the aggression of my AS down and I can stop being the incredible shrinking woman,
Delaware United States of America