The Importance of Trying New Forms of Treatment

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by Jessica Massengale |

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There are chances taken in life that can feel like pulling a lever on a slot machine. The outcome relies on a blind leap of faith, with fingers crossed for the best result. The same can be said of choosing a treatment plan for the course of your disease. The odds may be better with one medication over another, but you’ll never know until you take the risk.

The fact that scleroderma has no definitive cure makes it a complex disease to navigate. One problem is that some forms of treatment can really help one person, and do absolutely nothing for the next. This leaves a patient with a plethora of emotions, with anxiety prevailing over the rest.

Selecting a course of action must be done with careful thought and dedication. The mind has to be prepared to experience either the best- or worse-case scenario. The list of side effects on some medications tends to halt a person from even trying. I am a stubborn patient to some degree, but I’ve learned to be more open-minded to choices that can benefit my future. Staying in a safe zone while simultaneously getting sicker can have life-threatening consequences. I’ve learned that, for me, it is better to take a calculated, medically sound gamble to see if I can pacify the chaos inside my body.

In October, my insurance approved IV infusions for Actemra (tocilizumab), an anti-inflammatory arthritis therapy that has shown promising results in scleroderma patients.

The night before my first infusion, anxiety washed over any rational conclusions I had previously come to. The fact that it helped so many patients with minimal side effects evaded my mind while fear took over. I stayed up all night, browsing every patient forum and side effect list. My thoughts were overwhelmed with horrible scenarios of everything wrong happening to me. In a wave of panic, I messaged my doctor and expressed all my concerns about starting. Luckily, she was reassuring and understanding of my exaggerated worry.

Receiving Actemra infusion. (Courtesy of Jessica Massengale)

I am currently on my fifth infusion and have been experiencing nothing but positive results. My inflammation markers are down and my joint pain has significantly decreased. We are now working on decreasing the dosages of other medicines!

It hasn’t been a cakewalk, and the nurses have a hard time finding a vein in my hard skin. But the first lesson learned with scleroderma is that nothing comes easy. Had I stayed in my comfort zone, I would’ve never known how well my body would respond to something new. This newfound revelation gives me the strength to go a little farther and step out onto the ledge of treatments.

Anxiety among patients is justified for many reasons. The side effects of certain medications can cause more discomfort than the discomfort already caused by what the treatments target. A few bad experiences are all it takes to deter one from wanting to keep trying.

During the first year of my diagnosis, I was very sick from immunosuppressant side effects, but my skin wasn’t tightening. The end goal should always be to prevent inflammation and tightening because the damage is difficult to reverse.

Specialists have narrowed down certain medications and treatment plans for those with scleroderma, but finding the right one can feel like taking a gamble in an unknown territory. I’ve denied chemotherapy as a form of treatment, but many benefit from it — and even go into a form of remission. Prepare your mind on this journey and remember that your risk can also be your reward. If it’s not, take it as another chapter written on your path, and start afresh.


Note: Scleroderma News 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 Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.


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