THANKFUL FOR GNARLS AND MOONFLOWERS

Click on the map to learn more about the River Walk and Warren

It wasn’t anything as grand Pen Y Fan, highest peak in South Wales and southern Britain, but I completed the River Walk and ambled around The Warren in Hay. Kitted out in my knee compression sleeves and brandishing trekking poles, I walked beside the River Wye and up and down tree root-covered side paths that led to green fields. At only 1.5 to 2 miles, it’s not a lengthy amble and it didn’t see me high above the world looking down, but it was still a miracle. It’s been just around 8 years since I’ve completed any sort of recreational walk/hike, and while the desire to be out and about has never left my heart I’d mostly given up on ever being able to do it again. I couldn’t have imagined a more beautiful day for such an outing: sun high and bright in a sky filled with puffy clouds.

Fairy mushrooms at my feet.

Single dirt tracks winding around trees and through fields.

Waxy green leaves, vines, and gnarled branches.

Ferns along the riverbank cradling moonflowers. (I have no idea what their proper name is so my imagination settled on the magical.)

I attribute my success on this hike partly to the knee compression sleeves and trekking poles I mentioned in the beginning of this post. But it was also down to the months of intense physical therapy and the Cosentyx. It took a number of months to actually get this medication in my hands, one headache after another in order to be approved by the patient assistance foundation. The process in cases like this is always long and drawn out and also involves having insurance deny approval first or, in my case, show that it would be too expensive for me to afford even if they did approve it.

Just to get started on the medication, 1 dose per week for five weeks, would have cost me $3698.64–that’s roughly $740 per self-injectable pen. And out of my price range. Who could afford that? Luckily, I was approved to get Cosentyx for free via Novartis’ patient assistance foundation. Each month I call for my refill and it’s delivered by UPS the next day.
I’m able to administer it myself versus having to go to the hospital for treatment like I did for a few years previous.
Despite the horrible sound it isn’t painful in the slightest so long as I let the medication warm up to room temperature.

Upon receiving a diagnosis in the spondylitis family, standard treatment usually begins with NSAIDs (non-steroidal anti-inflammatory drugs) like Ibuprofen, Naproxen, Celebrex, and Indocin. Since I didn’t have a favorable response to Indocin or Celebrex, my rheumatologist moved on to another class of drugs called DMARDs (disease modifying anti-rheumatic drugs and prescribed methotrexate. This medication is used to treat cancer at higher doses, but in the case of spondylitis the dosage is much lower and just enough to dampen an overactive immune system, which of course makes one susceptible to infections of all kinds. In addition to methotrexate, I also began a course of prednisone which is a corticosteroid. The swelling in my achilles tendons was so unmanageable at the start of my treatment that there wasn’t any other option. It’s when these two medications proved only 40-50% effective that I entered the world of biological meds, biological meaning they are composed of living materials and cells from a number of organisms such as animals or bacteria. They are very expensive.

My first go-round was with Enbrel, which is a self-injectable like Cosentyx–the difference between these medications is the inflammatory pathway they target. Enbrel targets tumor necrosis factor or TNF, making it a TNF-Inhibitor, the very first category of biologicals to go on the market. Other TNF-Inhibitors include: Humira, Simponi, Cimzia, and Remicade. Having failed treatment with Enbrel, I was then prescribed Remicade which required me to go to the hospital half a day once per month for treatment since a it is administered by infusion. After nearly 4 years of infusions (which I only had about a 50% favorable response to and the pain returned one week prior to treatment), my doctor and I made the decision to try something different.

Because I had failed two TNF-inhibitors she suggested Cosentyx which targets IL-17, a different inflammatory pathway and which is also a newer medication. Note: the longer one goes without treatment (I fought for nearly 12 years to get my diagnosis) the harder the illness is to treat, the less responsive it is to the available medications. There is no guarantee that I’ll have a favorable response to the Cosentyx long-term; response rates and duration run the gamut, some patients also build up antibodies to the meds.

My purpose in sharing this information is to show just how long it took me to get from Indocin and Celebrex to Cosentyx: 7 years. Prescribing these medications is an art, it’s trial and error. And even when one doesn’t help so much, it’s scary to think about trying something new because what if it works even less than the one before? Right now, I’m thankful. I was a very active person for all of my life up until I couldn’t be. I grew up biking and hiking and skiing, and I loved to garden. I haven’t been able to do any of these things for the past 8 years, but with the Cosentyx I at last have the ability to try getting these activities back into my life in newer ways, with modifications, at a slower pace.

I was able to give a fond hello to some feathered friends during my Hay ramble…
And get closer still.
Walking beside the rushing River Wye, having that sound in my ears…was everything.

2 thoughts on “THANKFUL FOR GNARLS AND MOONFLOWERS

  1. I find it quite humbling to read of your battles with AS as well as the years it’s taken to get a medication that is currently offering you some small degree of relief. But to see what you managed to achieve on your short hike around Hay, and the treasures you found to hold that time in your hand, warms my heart and gives me hope.

    Liked by 1 person

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