I still remember my first visit with my rheumatologist when he told me I had psoriatic arthritis. It didn’t register. What in the world was psoriatic arthritis? I didn’t have psoriasis!
As an RN I had taken care of patients with a variety of autoimmune diseases. Most commonly they presented to the emergency department because they had an infection brewing from their compromised immune systems or they were in excruciating pain and needed some relief. I’d seen the gamut from rheumatoid arthritis, lupus, ankylosing spondylitis, multiple sclerosis to Hashimoto disease. But, in all my 30 years of nursing I’d never seen psoriatic arthritis.
Here was this young doctor who looked to be all of twelve telling me I had a severe form of arthritis and he wanted me to start on a biological right away. Say what? He recommended I start on Enbrel. I have no idea how or why he chose that particular biological to start out on. Perhaps it was my insurance plan I had at the time? I don’t know. All I know is his nurse led me down the hall for some x-rays and to have my blood drawn. Then she came in with a pneumonia vaccine and administered a TB skin test. Next were instructions on how to use the auto injector so I could administer the Enbrel at home. I was then given more instructions on routine lab work that needed to be done and tips on handwashing and ways to keep from getting sick.
So, I went home and started the routine of self-injections and lab work as directed. I remember thinking, is this all really necessary? Sure I’d had a total hip replacement six months prior and I had some aches and pains but really, was this that serious?
I was diligent about handwashing and wearing protective gear when working in the emergency department but despite all of my good measures I kept getting sick. My employer was great and soon my duties were changed into more management responsibilities to try and eliminate my exposure to patients as much as possible. But, when you work in a hospital setting you’re going to come in contact with germs and infections.
Before long I got a call from my rheumatologist that my white count had dropped too low and he wanted to switch my biological.
Next up in the lineup was Humira. My body seemed to tolerate it much better and my white count stayed in the normal low range. I continued to work but my body failed me once again as I developed two spontaneous compression fractures in my thoracic spine, most likely as a result of long term steroid use. At that point I started considering medical disability.
I started having some really strange symptoms of body numbness. It felt like I’d been to the dentist and the Novocain was starting to wear off. It was a very strange sensation as it effected mostly my left side but some days it was an all over sensation. At the time I was also going thru a lot of stress! Not only was I facing early retirement because of my disease but my marriage of 29 years was crumbling.
One day at work I felt terrible and the numbness spread to my face. I went to see my doctor and my blood pressure was sky high! He sent me immediately to the hospital for an emergency CAT scan of the head. I thought for sure I was having a stroke. Soon, my doctor appeared and sat on the edge of the gurney and said, “Your CAT scan was perfectly normal, this is all just stress and anxiety.” Oh Lordy! Seriously! I’ve always been so calm and level headed. I needed to get it together!
Shortly after I retired from nursing and was granted full medical disability, my husband and I separated and filed for divorce. With the divorce, I moved, he changed jobs and with that, we lost our medical insurance. So, I went off the Humira. Interestingly, I started to feel “normal” again. My blood pressure went back down to normal and the numbness sensation that I’d gotten accustom to, started to resolve.
I was starting to feel good, but my new rheumatologist was adamant that I take something for the psoriatic arthritis. Next up, methotrexate. It was affordable so that was the next logical choice. I hated that drug! The brain fog was unbearable! It got so bad that my family was concerned that I was developing Alzheimer’s.
After a year and a half my arthritis progressed despite the methotrexate so it was decided I should stop it and try Otezla. It was fairly new on the market and Medicare approved it making it somewhat affordable. However, after three months I fell into the Medicare Gap and I couldn’t afford the cost out of pocket. I was somewhat relieved as I had terrible headaches with it. Next was a round of Asulfadine followed by a round of Leflunomide. For whatever reason the DMARD’s didn’t work for me and my disease was progressing.
My rheumatologist was insistent that I get back on a biological. So next we started the multiple attempts at getting on a patient assistance program. After some failed attempts I was finally approved for Cimzia at no cost to me. Yippee! I was so excited, I was on cloud nine! The medication was shipped right to my front door and I was elated when the first shipment arrived. With Cimzia you do three rounds of a loading dose, each two weeks apart. The first week was fine but after the second round I started getting back the familiar symptoms of body numbness. Only this time it only affected my left side. It was as if I’d had a small stroke. My whole left side from my toes up to the top on my head was numb. I was having visual changes and I felt like my speech was impaired at times. A couple of times I tripped as my left leg wasn’t functioning properly.
I called my rheumatologist and he instructed me cut the third loading dose in half and to let him know if I had any more symptoms. I was reluctant as they hadn’t completely subsided. But, I took the third dose as instructed knowing that the half-life was 14 days and it could take weeks to get out of my system. In the meantime, my blood pressure shot up again and I was put back on medication to control it. The symptoms continued to get worse, my white count dropped and I developed a terrible case of bronchitis. My rheumatologist then decided I should discontinue the Cimzia.
I shared with him that these same symptoms had occurred with Humira but at the time my doctors felt it was just stress. I had reservations about trying another biological. He seemed to discount my intuition and concerns and after some deliberation he said he needed to do some research and would get back to me. A couple days later his nurse called and said she was mailing me some paperwork for the patient assistant program for Stelara. Another biological!
Frankly, I am petrified to put another biological in my body! What will this one do to me? At what point does a person say “that’s it, I’m done!” Right now my body is clear of biologicals and DMARDs, this is probably the best I’ve felt in years!
The application for Stelara is sitting on my desk but I’ve yet to open it.
Please note that the content of this post reflects the personal experience of the blogger and does not constitute medical advice. Success or failure with a drug, medical procedure, personal fitness program, diet, or psychological outlook is individual. Readers cannot assume that they can replicate any success or failure they read about in a blog. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding your medical condition or medications.