Adventures with RA

I have moderate/severe rheumatoid arthritis. This page comes as a challenge to create. I have no interest in sharing this particular basket of information with my friends and family; but as I was researching in the very beginning of deciding whether or not I could make this trek, I could only find one site in the whole (English) internet that cast any light on whether backpacking with rheumatoid arthritis was logistically possible.

Because of this, I want the struggles and triumphs I have experienced health-wise to be available to others who face similar circumstances. I would like there to be two sites in the English world that say, “Dear autoimmune,  If you can dream it, you can do it.”

(Actually, the other site kind of says she didn’t make it (which is why I haven’t linked it)…..but at least there will be two sites out there to consider.)

((…and hopefully I’ll make it…))

Here is what my RA looks like

I went through diagnosis at age 21 (I’m 24 and a half 9/28/15). I had a very sudden onset of symptoms (well, the warning signs were masked by assuming stiffness and pains to be from a very happy rugby career…). I went from concerningly sore and stiff to totally immobile in a week and a half. I sought medical attention.

The first doctor I went to (not a relevant specialist, but he had a great reputation for kindness–which is what I asked about when I called around to find a doctor) immediately prescribed a tiny bit of methotrexate and folic acid. My father (an MD) was concerned that I would be taking this powerful of a medication without having been seen by a rheumatologist. I worked to get in at Washington University Physicians, and was graciously accepted as a patient in the rheumatology division.

The first rheumatologist I saw stopped the methotrexate and started the max dosage of sulfasalazine (3 grams daily, I think?) and in a few months tripled the original dosage I had of methotrexate.

Thus begun my climb up the RA treatment ladder. My rheumatologist switched a couple years ago as my first moved to a different location. Fall 2014, I was taking 22.5 mg of methotrexate a week and was miserably watching at least one day a week be spent bed-bound and very sick. From the very beginning of working with a rheumatologist, I was guided by my much-loved, surrogate father (my best friend’s dad)’s medical advice and counselling–for which I am immeasurably grateful; I don’t know how it would be possible to go through treatments like these without someone on your personal side helping you understand the complexities and dangers of medications.

Thank you for everything, Dr. D
Thank you for your support, Dr. D

In late July 2014, I had an extreme flare that kept me on prednisone for longer than is preferred–climbing in dosage rather than cutting down each week. Though not medically unusual, it left me spending just enough time lying on the floor crying in pain for the loss of my body at age 23, that I opened my mind to biologics–a treatment path I had avoided because they are too new for us to know exactly how they will effect a person if biologics are used for, say…60 years (plus they have weird, inexplicable side effects). I was tired of losing one to two days a week to being sick, every week of my life; I was just tired of being so sick from the methotrexate.

Methotrexate is a hard medication to take; and if you are on it, you deserve a (very gentle) high-five and a huge (gentle) hug. Your life has some suckyness in it, but it has you in it too. Power through. Your secret struggles every week are shared by folks all over the world.

I started biologics late fall 2014 (two years after diagnosis). First was weekly Enbrel injections complemented with 15mg of methotrexate weekly and daily folic acid (no more sulfasalazine). Though unpleasant to self-inject, I wasn’t sick and the only side effect was a sensitive bruise on my thigh each week. Soon the Enbrel wasn’t effective and I switched to Humira every other week (spring 2015). Humira injections (yes, way more painful than Enbrel; but no sensitivity after the meds are in–you can make it through the 10 seconds, it’s worth it) worked for a few weeks but soon couldn’t keep up with my RA. I made the unfortunate and very final step into weekly Humira injections summer 2015.

My symptoms were well managed with weekly Humira. I struggled with the concept of being trapped in a treatment so powerful at such a dosage for the rest of my life (I’m still holding out immense hope that I’ll wake up some day soon and the RA will be gone as fast as it came), but honestly, Humira was working for me. (Thank you millions, Mom (and Obama), for giving me good health insurance.)

But I wanted to backpack New Zealand.

Weekly Temperature-Sensitive Injections in the Wilderness??

No.

I’ll cut to the conclusion. After working with my rheumatologist for a year and intense research and exploration for several months, the answer was no–there was no feasible way to get weekly injections while on the Te Araroa. Biologics are simply too sensitive (they are live injections) to carry in a pack, and there was no way to put myself in a city with a pharmacy with Humira every week. Having someone from the states mail me the injections was equally as unlikely to be successful due to the sensitivity of the medication–professionals pack that stuff and mail it around the world, not moms.

Backpacking with RA??

Yes.

But how? (I don’t know)

Options and Decisions

In the end I had two options: back to a high dose of methotrexate or a relatively risky infusion which could leave me symptom-free for up to six months.

Methotrexate is easy to carry (although not exactly ultralight…..). The greatest risk I would be taking is that I would not be able to easily get the regular blood work required when you are on methotrexate (to make sure you haven’t developed leukaemia or liver failure). The greatest downside was that I would likely not be able to handle the high dose, as before, and would be very sick at least one day a week. I’ve backpacked on high doses of Methotrexate–it is possible. But it is miserable and miserable with a whole, long day of miserable.

The other option is an infusion called Rituximab (the ‘ab’ is not spoken). Rituxim is really new to the drug world. It also only works in 46% of people and has fatality statistics for both the infusion process and the extreme risk of infection for the following months. If you want to know more about Rituxim (or any of these treatments), talk to your rheumatologist. A lot.

Rituxim carries no side effects other than extreme risk of infection (all RA treatments have increased risk of infection; they fight RA by breaking your immune system: welcome to autoimmunity). Rituxim’s risk is more like a guarantee of infection, but that’s why man created Neosporin and soap. Other than the chilling risk of a brain infection that has no symptoms except sudden death, infections can be managed. They can be prevented and easily treated.

Methotrexate or Rituxim? I was way out of my league for making this decision. My rheumatologist and I talked about the choice. Dr. D and I talked about the choice. At the end of the day, I still couldn’t be educated enough to fully understand what Rituxim was and what it would do to me. I did understand methotrexate sick, and I did understand 6 months symptom-free.

Clearly, I chose Rituxim. Very much against Dr. D’s advice; and also against my rheumatologist’s advice. Dr. D was concerned I was taking too much of a risk by choosing an extremely powerful treatment. My rheumatologist was concerned I was taking the risks simply because I wanted to go backpacking, rather than because there was no other choice for treatment. I couldn’t turn away from the chance to be symptom-free.

Rituximab

My first infusion was August 5, 2015. I did have an allergic reaction during the infusion, but it was treated with IV steroids and antihistamines. Restarting the infusion at a slower rate, I was able to complete the entire first infusion.

The final infusion was scheduled for August 19, 2015. I didn’t make it through this one. Actually, I never even started it. I had convulsive episode after the IV was placed (neurologist opinion after day in the ER, CAT scan, MRI and EEG: due to sustained high levels of stress and sleeplessness (I was a children’s division worker (social worker) before this hike 🙂 ) combined with a panic attack I was unable to get under control after the IV went in.)

(P.S. If you put IV’s in for a living, please don’t say ‘oops’, ‘geez’ or ‘well I don’t know if that’s in or not, but we’ll see soon enough’. Just pick something else to talk about.) (Not that it’s that gal’s fault; I was the one who got scared and was unable to control my own reaction…but she didn’t help with those comments).

So, eleven days before I was set to leave the country, with half a very powerful treatment inside me, I was told I needed complete clearance from a neurologist (have you ever tried to schedule an appointment with a neurologist?) and then clearance from my rheumatologist before I could reschedule an 8-hour infusion at a crowed infusion center.

I will refrain from sharing how terrible that process was because it does not leave Barnes Jewish Hospital in a very nice light; but after some of the most stressful days of my life and some of the hardest work I’ve ever done, I failed. The last possible day, my rheumatologist said no. She was unwilling to give me the second infusion because the risk was just too high. (The neurologist said I was totally fine, for the record.)

I guess I could have been more upset, but it was so far beyond my control all I could do was cry with the relief of having resolved this extreme marathon of stress and to mourn the loss of something I so greatly wanted. My rheumatologist did what she felt she had to do–and I made her listen to me cry about her decision. In the end it was simply over, and that was good enough.

Methotrexate

At this point I have no idea if I’ll make it through the hike or not. I have one infusion in my system. My rheumatologist gave me a higher dose of methotrexate (Thank you, Walgreens, for being awesome at your jobs and getting me what I need exactly when I need it), a couple rounds of back-up prednisone and a bucket full of prayers and hopes.

That’s all I can do in terms of medication. Now it is up to me to walk.

Honestly, I accept the loss of the second infusion. It was a big risk. I’m confident that what was meant to be has come to pass. Who am I to wish the past was something different, as if I would know what is best for the future?

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