RA Blog Week Day 3: Biologics are Scary


Nine years ago:  I remember the day my rheumatologist recommended that I begin taking a biologic drug.  I freaked out.  I felt like it meant that my disease was getting so bad that I had no choice.  I knew little about biologic drugs and thought it was a “last resort”.  This was before I knew about the antiquated process called “Step Therapy”.  All I knew is that I was being instructed to give myself a shot.  I’m not totally afraid of needles, but I wasn’t fond of having to give one to myself.  I was also handed a stack of information about the drug being prescribed.  I read the comprehensive information and cried as I read about the possible side effects.  It was overwhelming.  It was defeating.  Biologics were truly scary to me at that point.

Today:  I’m on my fifth biologic drug.  It took me almost 9 years to find a drug that worked well for me.  What I didn’t know was why I had to follow the Step Therapy process.  What is step therapy?  Well, it’s an antiquated  system that insurance uses to manage risks and costs.  Insurance requires that your doctor prescribes the lower costing drug in a certain class and only progress to a higher costing drug after the cheaper drugs fail.  I understand this from a business standpoint, but as a human being who spent many years trying to find a drug that brought relief, I’m livid.  That to me is the most scary part:  My insurance, not my rheumatologist, controls the drugs that I can take, regardless if it is the right one or not.  If I had only had access to this drug 9 years ago, I may not have had to live through so much pain.  The damage from swelling could have been avoided.  It’s scary that I had the misconception that biologic drugs were for people who had no other choice.  I didn’t realize how much the right one could decrease the symptoms and increase my mobility.

That being said, I am very aware of the serious side effects. About three years ago I had a very scary experience taking a biologic drug. This was my 4th biologic and first infusion drug.  I was definitely nervous, but desperate to feel better.  I had my first infusion and within 3 days I saw my ankle for the first time in 6 years.  It was a good looking ankle.  I liked it!!  I then had an issue with my blood pressure and had to put off future infusions for almost 3 months.  I was so excited because the three months of no medication was taking a toll on me.  I was sitting in the recliner in my doctor’s infusion room and the bottom of my feet started to itch.  It was bugging me, but no big deal.  During the infusion, I had an appointment with my rheumatologist.  The nurse walked me to an exam room.  I noticed my palms were itchy and my rings felt tight.  I walked to the sink to run water over my hands to get the rings off and I noticed I was getting large red welts up and down my arms.  I walked to the door and my doctor saw me.  I said, “I think I’m having a reaction”.  She told me to sit down and she stopped the infusion drip.  Next thing I know, I’m on my back, blood pressure is dropping and I was going in and out of consciousness.  I had an allergic reaction and it was bad. I was given some sort of medication (I really don’t remember what it was) and I slowly regained consciousness.  I was very shaken up and feared that I would never see my ankle again.  I had a drug throw me in anaphylactic shock and all I could think about was not seeing my ankle again.  Hours later, I realized that I could have possibly died if I wasn’t surrounded by medical professionals but in the moment, I was crushed that the first drug in 6 years to help me feel good tried to kill me (kind of /sort of). My rheumatologist assured me there were other options.  She was right.  I’ve been on my current biologic drug for three years.  I still have flares, but not as severe as the years prior.  I am still walking without a cane.  I am still able to work full-time to get insurance.  I’m still moving.  The potential side effects of:  serious infections, allergic reactions, cancer, headache, upper respiratory tract infection, sore throat, and nausea do scare me, but not as much as being disabled.  I’ve weighed my options and am comfortable with my choice.

Biologics may be scary, but I’m willing to take the risk to maintain a good quality of life.

I am proud to be apart of the 2nd Annual RA Blog week.  Please take the time to check out the other blogs posted today!  http://radiabetes.com/blog_week16/day3.html


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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

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