Amazing outcome possible?

I got a specialty care management patient education handbook for RA from Curascript in the mail yesterday. Wow, that was a mouthful! On the cover is says “Making amazing outcomes possible.” Inside it answers questions like: What is rheumatoid arthritis? Who gets RA? What are RA symptoms? What causes RA? How is RA treated? What medications are used to treat RA? WOW! Thank you for this useful information Curascript?

I sarcastically read the book aloud to my husband while he made Tal Ronnen’s corn chowder recipe for dinner last night (YUMMY!). I read, “How is RA treated? RA is a chronic disease. This means that it lasts the person’s whole life and may not go away.” The answer to the question is, of course, DMARDs, steroids, NSAIDs, and/or analgesics. This was more of a checklist rather than an informative booklet.

This particular section made me realize, sadly, I could check off all of the above in just 8 months since my severe symptoms started. Thanks Curascript! When I was first diagnosed (just by symptoms) by my primary care doctor he prescribed Naproxen until I saw a rheumatologist. He also gave me very low dose of steroids but suggested I take them ONLY if I became desperate. My first appointment with my rheumatologist he told me to take the steroids! I did. The steroids and naproxen didn’t do much other than fulfill my need to do something about my pain. Then it was adios NSAIDs/steroids and hello methotrexate and it’s companion folic acid! High pain day? Pop a Vicodin or Tylenol (but don’t expect much). Now, Humira has been added to the mix.

And boy has the cost increased! Humira bills my insurance for $2,071 and some change, my copay is $100, and the my Humira’s program (c/o Humira) brings it down to $5 for me. But, it comes with frequent phone calls, side effect warnings, patient training, nurse support, brochures, booklets, and refrigerated medication delivery. According to many different articles, specialty pharmacies are growing due to the high demand of specialty medications, like Humira. I wish I was still unaware that specialty pharmacies even existed! It’s frightening and sad. We’re all sick and it’s expensive. My dad shared that he took Humira years ago and his insurance eventually stopped covering it and at that time it was over $4,000. Gee, I wonder why the insurance dropped it… It was working for him but, he wasn’t able to afford it and therefore had to stop taking it. WHAT?!

Why did I (or anyone) get RA? There are no answers. It would be nice if there was more emphasis on a cure rather than treatments (made for multiple diseases for optimal sales) making pharmaceutical companies and speciality pharmacies lots of dough! I hope with the work of RA Warrior and many others we’re able to get some answers and move away from band aids to a cure. Now THAT would make an amazing outcome possible.

Until then, I anxiously wait for my newest band aid to bring relief. The last few days have been rough which makes tears/fears come in waves. I try hard not to fall into a what does my future hold trap. One day at a time!

Curascript’s ears must have been ringing… just got a call! Refill time already?

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2 comments

  1. I hate those patient “education” tools too. They are obviously written by someone who has never had a chronic disease! I hope you get some relief soon.


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