The “R” Word

R

I remember the first time her doctor ever used the “R” word. It was Wednesday, May 10, 2006. We had an early morning appointment and I remember being hopeful, but cautious. We had discontinued Humira some six months earlier because it did not seem to be doing any good, but she was still on Methotrexate by injection. Without explanation, as the holidays rolled into the new year, Caitlin was doing remarkably well. I looked back in shock and realized there had been no mornings of hot baths and heating pads as we struggled to get to school even an hour or two late. Life had been almost…normal. Her joints looked good to me, but even so, I wondered what surprises the doctor may reveal or what truth may be shown in the lab results. She had been playing softball that spring and had never taken the bench during a practice or a game. It was…. Miraculous.

He said nothing as he went joint by joint inspecting. Then he smiled as he flashed her chart in front of me so I could see the lab results. SED and CRP both normal. He smiled. “I think she is in an unexplained medicated remission”. I could have stayed in that moment for a long time! After five years of trying almost every medication available, it was when we were contemplating for the next step, waiting for the next new medication, that everything unexpectedly turned around… without rhyme or reason.

The criteria for what constitutes remission in JIA had long been debated. But international studies begun in 2002, and completed throughout the next several years in conjunction with rheumatologists from around the world concluded the following:

Preliminary criteria for inactive disease and clinical remission of JIA.
Inactive disease
1. No joints with active arthritis
2. No fever, rash, serositis, splenomegaly, or generalized lymphoadenopathy attributable to JIA
3. No active uveitis (to be defined)
4. Normal ESR or CRP (if both are tested, both must be normal)
5. Physician’s global assessment of disease activity indicates no disease activity (i.e., best score
attainable on the scale used)

Clinical remission
Two types of clinical remission are proposed:
1. Clinical remission with medication. The criteria for inactive disease must be met for a minimum
of 6 consecutive months while the patient is taking medication.
2. Clinical remission without medication. The criteria for inactive disease must be met for a minimum of 12 consecutive months while the patient is off all anti-arthritis and anti-uveitis medication.

You can see some extracts of these studies here:
http://www.clinexprheumatol.org/article.asp?a=2948
and here:http://www.jrheum.com/subscribers/04/11/2290.html

I floated out of the office that day. Caitlin had struggled so much, I had begun to fear in my heart that she would never hear the “R” word in her lifetime. But all of a sudden, anything was possible. The fact that we could not attribute her remission to any specific thing speaks volumes about the damned mysteries of this disease. I so wished I could draw a treasure map that would lead other parents to Remission, or even to lead us back if necessary…. But I could no further explain our luck than I could explain why she had the stupid disease in the first place. It was as if a switch had magically been flipped off. We just focused on enjoying those good days.

I remember we had a Bank Night for Arthritis Walk that night. I had tears in my eyes as I told Mike’s mom about our great news. She had long since stopped believing in miracles for her son. Diagnosed ten years before my daughter, he was living in chronic pain with permanent damage well before the first biologic hit the market. I thought our news would be a beacon for her, that it would give her some hope. “It’s too late for us,” she said. “It will never happen.” I felt terribly guilty that I could not guarantee Remission for Mike… or even offer some concrete evidence to support the hope. We were traveling the same road, Mike had the same disease and was trying all of the same medications…. With different, less miraculous results.

We floated on the wings of Remission, daring to dream of an arthritis free future…. for exactly two weeks. On May 25, Caitlin awoke with a flare so bad she had to be carried to the bathroom in the morning. And we were back on the roller coaster. I worried that maybe Mike’s mom was right not to hope.

In the years since, we have found our way back to Remission several times. Sometimes, it has been due to medication. Sometimes, we are in the dark as to what brought the fortune upon us. It has been both a blessing and a curse… for it’s such sorrow to leave that wonderful place.

But what I do know, is this: For this disease….It’s possible. It happens. It happened for my daughter – who had tried and failed every biologic on the market at the time (and several since then.) Remission is possible…. And when arthritis has pulled us back into the fray, I can not stop hoping for it or trying to get Caitlin back there. We just have to keep moving….back to the “R” word. And I won’t stop dreaming that someday, the road to Remission will be defined, and clearly open for everyone who wants to journey there.

This entry was posted in Actemra - Tocilizumab, Humira, Medications, Methotrexate, Remission. Bookmark the permalink.

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