Decisions, decisions: A question of immunosuppresants

I’m currently reading “How We Decide”, by Jonah Lehrer, author of “Proust was a Neuroscientist.” It’s the book of the month for my book club, and although I was doubtful that I’d enjoy reading it, so far, I’m hooked. I’ve learned a lot about neurons and football in the first few chapters, and have actually enjoyed doing so. I’ll leave a final thumbs up or down until I finish it, but in the meantime, the book has me thinking about a few things, one of which is how we decide which course of drug therapy we’re willing to try.

Don’t get me wrong – of course, our doctors play a HUGE role in helping to determine what drugs will help, which will hurt, and when and how best to administer the drug cocktail of choice. But, as my doctor put it years ago when I was trying to decide whether or not to start Cellcept, “The patient has to decide.” End of story. Therefore, as patients, it’s in our best interest to be informed, educated, and up-to-date on the treatment offerings in the lupus world, so that we can make solid, informed decisions that we can feel good about. It’s a burden, I agree, but there’s no way that educating ourselves can hurt.

Years ago, when I hemmed and hawed, researched and examined whether or not to start Cellcept, I had a lot of stuff to consider: possible side-effects, restrictions on pregnancy, cost of drug (because even WITH insurance, the drug cost more than my other prescriptions), etc. I didn’t know anyone else in my immediate lupus circle on the drug, and I wasn’t sure I wanted to be the guinea pig. In the end, I decided to go with the drug, based upon three things, as described in the excerpt of my book below:

A few days prior to my next appointment with Dr. R, [when I was to decide whether or not to start the drug], my mom called. She had met Brenda, a woman in my hometown who had lupus. Brenda was just a few years older than me, was diagnosed with lupus about the same time, and had started a new course of drug therapy about a year earlier. She’d come across this new “miracle” drug that was controlling her disease activity unlike the other medications she (and I) had exhausted. That drug was CellCept®. Brenda had experienced dramatic improvements thus far, and was hopeful that the drug would enable her to become healthy enough to fulfill her goal of having children in the future. As I pictured this woman I didn’t even know, experiencing an inkling of hope in her fight against lupus, I knew this was the nudge I needed to start the medication.

I had been blaming my hesitation to start the drug on the increased risk of cancer. But my real reluctance was rooted in my refusal to put aside the desire I had to become pregnant. It wasn’t the drug I was avoiding; it was the change to my lifestyle. I was choosing to ignore the solution that my doctor was presenting in order to protect my own agenda. When I looked at the situation objectively, I realized how little of a conundrum I actually faced. The case for CellCept® had been made: my doctor was recommending it, I’d heard a very convincing success story, and the drugs I was currently taking weren’t keeping me healthy enough to get pregnant in the first place. What was I waiting for?

Of course, you know how my story goes…I was on Cellcept about 2 months when I noticed a huge improvement in symptoms. I continued to experience symptom relief, becoming healthy, stable and strong over the course of a few years. My success with Cellcept enabled me to switch to Plaquenil (which is safe for pregnancy), so that I could try and get pregnant. Since my sweet babydoll Deirdre just celebrated her first birthday, I consider starting Cellcept one of the best decisions I’ve made since being diagnosed with lupus.

In fact, at my most recent book signing, a woman I’d never met before pulled me aside, and said, unsolicited, “You know what the best decision I’ve made since being diagnosed with lupus is? Starting Cytoxin. Thank God for Cytoxin.” Three cheers for drugs that work!

That said, starting strong immunosuppressant drugs is not for everyone. A gentlemen recently contacted me about the availability of new clinical trials, because his wife has lupus, and together they’ve decided not to go to the next tier of immunosuppresant drugs (like Methotrexate, CellCept, or later, Cytoxin), as he says, “for obvious reasons.”

People struggle with the immunosuppressant drug decision all the time, as well they should. It’s hard to know out what our bodies need and what they’ll respond to, how much our pocketbooks can handle (since, unfortunately, without insurance, these drugs can be prohibitively expensive), and what substances our bodies should be expected to handle. Difficult decisions, I agree, but here’s an interesting counterpoint: We wonder how many drugs our bodies can handle, but do we consider how much pain, suffering, and organ damage from the disease our bodies can take before enough is enough?

Bottom line, you have to do what’s right for you – taking into consideration your short-term and long-term health, your doctor’s recommendations, and the research that’s available. While I may be a posterchild for Cellcept (or so says my doc.), I know others haven’t found as much success with the drug. I’m just thankful I took the chance to find out how I’d do!


Mariana Aguila said…
Hi Sara! My name is Mariana and I've had lupus since 2008. I'm 24 years old and I read your blog. I wanted to ask you something, do you have a normal life? I know lupus will accompany me for the rest of my life, but sometimes I feel scared and worry that I won't be able to have a normal life. I want to get married and have kids. I just started with Cellcept, plaquenil and cortisone so I hope I can get better. Do you still have to take Cellcept or any other drug? Sorry if I ask a lot of questions, but I don't have many people I can talk to about lupus.
Sara Gorman said…
Mariana - Wow! Thanks for reading along for so long. I really appreciate it! Your questions sound right on target to me. I asked those same questions, and thankfully, found answers to many of them for myself along the way. The short answer to your first question is yes - i have a very happy, healthy, "normal" life with lupus. Some may call it a "new normal" - as i do make accommodations throughout the day to make sure i keep my lupus in check (extra rest, medication regimen, reduced stress). And over the years, I had to learn that some of the things we consider normal stages of life - like career plans, having kids, etc. - couldnt always happen when or as I'd planned them to. I had to be patient with lupus, and self-aware enough to know how to manage the disease first, and fit all of those "normal" aspects of life in second. I am still on Cellcept, plaquenil, and predinsone myself, and they are really working for me. I hope they do the same for you! I think because you're asking these questions now, you're setting yourself up to succeed! Taje care, and never hesitate to email with more questions.

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