In September of 2008 the pain and constant exhaustion became intolerable. At the time I was working for a nonprofit organization and for the first time in my life had found a career path for myself. Then out of nowhere I had my first real flare that convinced me once and for all that the doctor was right and I really did have Ankylosing Spondylitis. It was then that the neck pain started waking me up every morning at 3 AM. I would start my day with Vicodin and a heating pad but nothing took the constant neck pain away. The pain in my lower back and hips was so bad that my husband had to leave work each day to pick our kindergartener up from school because I couldn't walk from the car to the school. The pain and exhaustion was too great. My day became a delicate balance between walking and sitting. Forget about housework, a job or even typing an email. I would sit until the neck pain made me so nauseous that I couldn't stand it (usually about 90 minutes) then I would get up and try to do dishes. If I couldn't bend because my hips were too bad I would just pace back and forth in the living room. That was when I went from, "Hell no I am not putting that biologic crap in my body," to "how soon can you get me the needles?" So, in October of 2008 I started Enbrel along with a high dose of prednisone. My rheumatologist said, "Give me six months and I'll have your life basically back to normal." I left my job and started collecting unemployment and figured I would use the time to get myself well until I found a new non-profit position. Perhaps this time I would try part time.
One month later I was still waking up every morning and downing pills to take the pain away. The Enbrel took away most of the constant joint pain but not the neck pain. The trade off was migraines. I woke up every morning with debilitating neck pain which about 10 days a month turned into a migraine. Now, I have heard people say, "I went to my son's ball game and I had a terrible migraine," or "I am on my way to a party and I have a migraine." Frankly, that just pisses me off. These were MIGRAINES. I am talking about hanging off the bed vomiting in a bucket not being able to stand kind of migraines. Each one took a full day from me and gummed up the works in our already disrupted family. I waited the six months my doctor recommended to make sure the drug was at full effectiveness and told my doctor I couldn't stand it anymore. The migraines stopped almost immediately. Next up - Remicade with Methotrexate. First I had to get this drug out of my system completely which meant another 3 months of almost constant pain and discomfort all over my body-not just the neck.
Remicade required me to come to the office for infusions. I can't remember how often it was but since I wasn't working and my life had now almost completely become about doctor visits it wasn't that big a deal. Each visit was a few hours long. Almost immediately I developed a sinus infection. Thus started a cycle where the doctor would suspend the Remicade to treat the sinus infection with antibiotics. I would finish the course of antibiotics and restart the Remicade only to wake up a week later with a sinus infection. Just like with the migraines my rheumatologist didn't feel we could make a connection right away to the medication so she sent me to my ENT. The ENT, after doing a myriad of tests felt I would benefit from a surgery to correct my deviated septum. "This," he said, "is what is causing your sinus infections!" So, I agreed to the surgery. After two weeks of terrible pain from the surgery the sinus infection started right back up. I went to see my ENT for the follow-up on the surgery and he put me on an antibiotic nose rinse...yes, each morning and night, in addition to all my other AS and pain meds I was pouring a saline and antibiotic solution up my nose to keep the sinus infections away. Still, my doctor wouldn't say the Remicade was what was causing my sinus infections. About eight months after starting the Remicade I decided enough was enough. Nothing was getting rid of the sinus infections and I was convinced they were caused by the Remicade. During this time my AS pain and exhaustion had not gotten any better. I was living the life of a 90 year old shut in. I told my doctor enough is enough. The sinus infections stopped. Next up - Humira.
Humira is not quite as dramatic a story. I started Humira shots at home and began getting migraines again. After three months I went into my doctor and said, "That's it, I want off of this rollercoaster." By this point it had been a full two years of constant pain from the AS mixed in with Migraines, sinus infections and an unnecessary surgery. This is not even to mention all the other specialists I had to see to rule out cancerous legions, dizziness, allergies, feminine issues and pain management. At present I have 15 specialists and have at least 3 - 4 doctor's appointments a week.
About six months ago I told my doctor I will no longer consider biologics as an answer to my AS issues. I am presently taking Methotrexate, a very low dose of prednisone, MS Contin and Vicodin daily along with a whole host of other meds. Tomorrow I will be starting a new diet that I am hoping will help my AS issues.
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