The 7th time’s Prince Charming??

I recently started my seventh biologic drug.  7th…. S-E-V-E-N-T-H.  I believe there are only 10 biologic drugs (don’t quote me on that).  But I fear I am running out of options.  What is a biologic drug? I’ll let WebMD explain: “Biologics are genetically-engineered proteins derived from human genes. They are designed to inhibit specific components of the immune system that play pivotal roles in fueling inflammation, which is a central feature of rheumatoid arthritis.” These drugs are quite expensive ranging from $1,000-18,000 per month.  Biologic drugs on tiers 1 and 2 did not work well for me.  I never saw any significant relief of symptoms on those drugs.  They did help to reduce some pain, but it was clear my symptoms progressed.  Tier 3 drugs did provide me with more relief but one threw me into anaphylactic shock.  Another was a mini miracle for about 2 years but the swelling was always still significant in most of my joints and I often needed steroids to get me over flares.  Then I transitioned to a ridiculously expensive drug and I did feel really good for a while, but again, the swelling was CRAZY.  Steroids to the rescue once again.

I went to Capitol Hill with the American College of Rheumatology last month (I will post that blog ASAP).  The day after I returned, I had a rheumatology appointment.  My joints were on fire.  Red, swollen, and I was really hurting (walking all over Capitol Hill is exhausting when you aren’t battling RA).  Although I did feel somewhat better some of the time on this drug, the swelling remained a significant issue.  Hands so swollen during the day but I had to type up reports and input data while at work. Basically, my job made it more difficult for me to dress myself and shower….and forget about my hair.  I’m was rocking a ponytail almost daily.  I knew the drug wasn’t meeting all my needs, but changing medications is such an emotional thing for me.  Let me explain why….

I know that I didn’t “fail” the drugs.  I know that the drugs failed me, but I still feel so disappointed.  I try not to hang to much hope on new medications because I know there is no cure, but I always hold out hope that this drug will “do the trick” (honestly, a trick for me at this point is buttoning up a blouse in the morning!  LOL).  Ok, it’s actually pretty sad, not funny, but if I don’t laugh, I’d cry.  My goal isn’t that I can run a marathon or climb Mt. Everest.  My goal of feeling better means I can work, clean my home, do laundry, grocery shop, and generally be a functional person.  It just seems like I am always disappointed and even though I know it is not my fault, I still feel like a failure.

I started my new drug with a lot of doubt and trepidation.  I know people who take this drug and see good results, but I fear having any hope only to be let down again.  After about 2 weeks, I was walking down a LONG hallway at work.  I suddenly realized that I wasn’t in pain in the normal places.  Don’t get me wrong, my legs were fatigued from the long hallway (probably b/c I’m so out of shape from the chronic sore joints), but my ankles weren’t screaming.  My knees didn’t ache and my hip didn’t twinge as I walked.  SHOCKING and SURREAL.  I’ve had some really good days.  So much so that I may have over done it.  Yesterday, I attended a football game right after work.  I was helping with the cheerleaders, so I stood on the track for about an hour after work.  I did sit for a bit, and I felt fine, but I was on my feet most of the day.  After the game, I helped carry pom poms back to the building.  I felt pain while carrying them, but ignored it.  I got home and noticed that my knuckle resembled Jabba the HutIMG_5163-1 and my ankles were mildly swollen.  The worst part was the fatigue in my legs.  It bordered on painful, especially when I climbed the stairs at night.  All these questions rumble through my brain.  Is the drug not working?  Did I do too much because I was finally feeling good?  Who knows.  I certainly don’t.  I enjoy working with the cheerleaders, so if feeling pain later is the cost, I have to be okay with it.

Surprisingly, I woke up with relative ease today.  I only got stuck with my back for about 10 minutes until I was able to stand (it normally takes about 45 minutes-1 hour).  Walking down the steps was painful, but things got better as the day went on.  So the downside of still getting flares of pain and swelling post activity seems to be balanced by the upside of not suffering horribly the following day.  I guess that is a checkmark in the plus column.

My 7th biologic drug may not be my knight in shining armor, saving me from my evil RA after all,  but it’s not a bad first date.  I’m going to try to remain optimistic and appreciate the pain free moments as they come.  I’ll deal with the flares and pain like always and keep on keeping on.

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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.

One thought on “The 7th time’s Prince Charming??

  1. Never ever give up. Why? because eventually, we have hope that something will work. I am on my 6th and it is the second best. I hope yours goes a very long way. Mine has lasted 3 years so far. The previous record was 4, I feel like Kramer running the car on empty.

    Liked by 1 person

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