Lupus Treatment is a Matter of Trust Between Patient and Doctor

Kristiana Page avatar

by Kristiana Page |

Share this article:

Share article via email
dependence, a matter of trust

Being treated for lupus means that I’m in an unofficial agreement with my doctor. Both of us know there is no clear-cut cause of lupus, and therefore, no cure. With this knowledge I accept that any medication prescribed to me isn’t actually treating my condition, only the symptoms, and that there are inherent side effects and risks.

Even in our era of regular medical breakthroughs and advances, lupus remains a big question mark. Each case of lupus is radically different. I know of people who live with it day-to-day mostly unaffected, but then there also is a parade of others who deal with severe brain fog and chronic pain to the point where basic daily tasks are near impossible.

Without prescription medication I couldn’t be where I am today, playing a high-intensity sport a couple times a week, going to the gym, surfing and feeling as fit and healthy as possible.

I’m eternally grateful to my renal doctor, and when it comes to lupus I put my complete trust in him. But as much as medications help me, I can’t worry about what the future holds. Nothing prescribed is a cure; it only will help manage the many symptoms of lupus. That’s one of the few things that’s certain – and every medication has a list of side affects.

The thing is that I don’t doubt my doctor; I feel comfortable in his care and know that all forms of treatment are intended to be in my best interest. But, as there are no solid answers, being treated for lupus is essentially a guessing game. I can only hope that his guess about my prescriptions is an incredibly educated one.

Though I’ve heard of various types of treatment, shortly after my diagnosis I was given two options: Cellcept (mycophenolate), or a form of chemotherapy. I was warned there were risks to both, but as a young adult, due to the risk of infertility among a lost of other long-term side affects linked to chemo, Cellcept would be the better choice.

Taking Cellcept for more than six months, I’ve seen it play havoc with my hormones and menstrual patterns. And, while somewhat frustrating in the short term, I often worry what it might mean for my reproductive system as I get older and should I ever want to have kids.

It’s not natural to be in your 20s and skip a half-year of periods if you’re not pregnant. And while I have to admit it was convenient in some ways, it raises a long list of questions about what this medication might be doing to me internally.

If, 20 years from now, I find there were long-term side affects to Cellcept, I’ll be understandably and deeply upset, but not angry. Every morning when I swallow a handful of prescription meds, I reaffirm an agreement of trust with my doctor. Doing so acknowledges that it’s not perfect, and there are downsides. I know there are risks to this type of treatment, but there are risks with every form available, and the other option is no treatment at all – to just let lupus inevitably destroy from the inside-out.

I live with the knowledge that the anti-rejection medication Cellcept holds my lupus at bay every single day, and it’s the reason I made it back from my downward spiral. It’s not a perfect situation, but my life with lupus will not be a fairytale, and there will be casualties along the way. I accept that there’s an unknown number of possibilities coming for me, but I still have two kidneys that work and I’m living my life because of the medication prescribed to me.

Someone once told me that I should never give out trust freely, as it is sacred and needs to be earned. Yet, every day I put my faith in a doctor I barely know, trusting his professional opinion and hoping that when it comes to my health, I’ve put my confidence in the right hands.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.