On choosing medicine’s side effects over scleroderma progression

Difficulty getting to sleep has been the worst side effect of mycophenolate by Tomisa Starr | November 26, 2025

​Note: This column describes the author’s own experiences with mycophenolate. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I’ve been taking mycophenolate for nine months now. An immunosuppressant, it is used to treat interstitial lung disease and scleroderma.

Scleroderma is an autoimmune disease that’s caused by an overactive immune response. Immunosuppressants help dampen the immune system, which can slow disease progression and help prevent the damage that scleroderma causes. But treatment must begin early, before organ involvement becomes advanced, as untreated scleroderma can result in damage to the lungs, heart, kidneys, and gastrointestinal tract.
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I went without immunosuppressant therapy until this year, after being diagnosed with scleroderma in 1993, because insurance maintained that there was no medical necessity for treatment. By the time I was able to access an immunosuppressant, I had developed lung and gastrointestinal involvement.
The medication seems to be really helping my symptoms, but I have experienced some side effects from it, namely intestinal upset and difficulty sleeping. It’s the difficulty sleeping that has really bothered me.

​What’s worse — the disease or the side effects of treatment?Dealing with the side effects of treatment can be a burden, and trying to manage my sleeping problems has definitely been complicated.

My doctor suggested that I try a natural remedy, such as melatonin or chamomile tea, to help improve my sleep. But I have tried melatonin in the past, and it just didn’t work for me, and drinking or eating anything right before I go to bed causes reflux.

My rheumatologist has recommended that I try behavioral medicine and practice good sleep hygiene. I’ve noticed that I sleep better if I go to bed right after taking mycophenolate.

Early in my disease journey, I felt relatively OK. My symptoms weren’t bad and, for that reason, I believed my disease wasn’t as active. I couldn’t feel my disease progressing, but it was, and I gradually began to feel worse. Left untreated, an uncontrolled autoimmune disease like scleroderma can progress and result in disability and death.

Dealing with the side effects of a medication that helps prevent the need for further intervention is worth the cost, I believe. Scleroderma is lifelong, but the side effects of treatment can often be temporary. Despite the side effects I’m having, untreated disease is worse.
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That’s why I’m sticking with my treatment.