Time to Escalate-A Difficult Decision: An RA Story

When is it time to go to the harsher treatment? The litmus test is “when is your quality of life failing”. My friend, Amy, shared the story of her sister, aged 51, who died from heart disease after taking biologics for her Rheumatoid Arthritis. My Dad shared a story of his hair dresser of 30 years, aged 52, who contracted a fungal infection after being on biologic treatment for her RA. She died several weeks later. Frightening.

Greg, my husband, and I have discussed when and if I would ever go down the path of harsher treatment for my Rheumatoid Disease (RD – I use disease instead of arthritis for clarity). Here is my typical day:

1. Wake up, stretch, see how my joints feel, if painful, take a Diclofenac, if not, move on to coffee.
2. Take care of important items in the morning, shower, laundry, scheduled items, oh yeah, and my 8 hour work day – my energy is limited, but I never know how much.
3. Prioritize evening events based on the amount of energy left. I learned long ago to say no to most requests for extra curricular time.
4. Try to get walking and movement in each day.
5. Watch what I eat and stay away from gluten, dairy, sugar, and all the good comfort items. I eat fresh veggies, fruits (not juice), and lean meats and fish, oatmeal, limited other items – still eat bacon occasionally.
6. Before bed, take a boat load of vitamins and supplements, and Plaquenil to give my body ammunition to stay healthy.

All other events are planned around the regimen with little guilt anymore. This is my minimal game plan – bare minimum. When my RD interferes with this daily ritual – that’s when I start thinking about the next level of treatment.

This summer has been one for the books – two bouts of flare ups with pain increase, energy decrease, and basic daily functioning in jeopardy. Prednisone helps but it is not a long-term solution. This past Friday, I reached out to my Rheumatologist. She recommended Enbrel, and I thought, Ok, let’s take a look at this…

Enbrel:  Used for treatment of a variety of Rheumatic Diseases – I found it is a biologic, and an injection. The medicine must be kept refrigerated and a new set up of needles, disposal, maintenance must be implemented. Hmmm. I needed to look at other alternatives – this didn’t set well with me, for some reason. The needles don’t bother me, the change in routine did.

I messaged the doctor back and asked if there were pill form alternatives instead of jumping from Plaquenil (most benign treatment for RD) straight to injecting biologics and suggested Xeljanz. She agreed this was a viable alternative and worked with the insurance company to have it approved, and they did.

Xelijanz: Pill or injection form for treatment of moderate to severe Rheumatoid Disease and can be taken with Methotrexate. I took Methotrexate over the summer and had a weird reaction to it, but was also taking Prednisone, so I will try again without the steroids.

Here is my dilemma: Do I keep dealing with flare ups and have a poor quality of life – despite my best efforts – or do I choose to go to the next level of treatment?

Things I had to consider:

1. There are side effects – that’s a given – how will they impact my life?
2. Will the new medication improve my quality of life?
3. Will my new quality of life be worth the risk of reduced mortality?

This is not an easy decision. I prayed over it, talked with Greg about it, and researched more than my brain could stand sometimes. Bottom line is, my body is fighting itself. My immune system is attacking my flesh and bones. If I do nothing, my organs could be in trouble – when and how much is up in the air. If I go to a more aggressive treatment, my quality of life may improve at the risk of my organs failing – when and how much is also up in the air.

BOTTOM LINE: I am choosing Quality of life over Quantity of life. This is a choice only I can make with God’s guidance, my husband’s input, and what is most logical for me to be who I know God wants me to be: His child, a wife, step-mother, Grandmother, daughter, sister, aunt, community member, church goer, small group leader, pet parent, writer, traveler, friend and on and on.

I pray this decision is aligned with God’s plan, and if not, as always, I ask Him to throw a brick wall in my path, in Jesus Name, Amen.