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.

Living with a chronic illness is like fighting a war by Tomisa Starr | September 24, 2025

​When I was diagnosed with scleroderma, I cried. I wondered, “What is going to become of me?” I didn’t feel brave. I felt helpless and afraid.

My scleroderma symptoms didn’t come all at once. Shortness of breath and fatigue — symptoms of interstitial lung disease (ILD) — came on slowly. These can delay an ILD diagnosis because they are vague and can have many causes. For example, I have pulmonary arterial hypertension as well as scleroderma, and difficulty breathing and fatigue can also be caused by a scleroderma renal crisis. In my case, however, the symptoms are caused by scleroderma’s direct effect on my lungs. 
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I also have gastrointestinal symptoms, such as heartburn and bloating, that are very bad and my reflux is unbelievably painful. Whenever I have reflux, my throat hurts so badly that it feels like I’ve been scalded. Drinking water helps thin out the mucus and acid, but it still hurts. I take medications to control my stomach acid.

Scleroderma can be unpredictable, so I'd rather be informed and take action by Tomisa Starr | July 16, 2025

​I had a chest CT scan in April 2024, and then another one last March. I’m experiencing a bit of anxiety and uncertainty about the most recent scan.

There are some things about having a rare chronic illness like scleroderma that I just can’t control. This frustrates me because I like to feel like I’m in control of things. When I’m not, it makes me stressed and anxious.

People with scleroderma have an increased risk of cancer. My chest CT scan last year showed an 8-mm spiculated nodule in one of my lungs. My recent scan showed that the nodule had apparently shrunk to 7 mm. I didn’t know what having this lung nodule might mean, so I needed to know more. I was concerned that it might have a connection to cancer.
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Even though I know some things about how scleroderma affects me, I still don’t think I have all the answers. Since scleroderma is a complex disease involving multiple bodily systems, it affects everyone differently. Knowledge is power, because you never know when a seemingly small thing might lead to a bigger issue, like cancer, for example.

I like to go for walks when it's not too hot or cold by Tomisa Starr | April 2, 2025

For those of us with scleroderma, it’s important to stay warm, because changes in body temperature, especially when exposed to the cold, can cause blood vessels to constrict.

I like to go for walks to get exercise and maintain my lung function. My exercise “Goldilocks zone” — my favorite time of the year to go for walks — is when it’s not too cold or hot outside. Where I live in California, that occurs from late fall to spring, when the daily high temperatures are in the mid 50s to 60s. Exercise makes my blood flow, which helps to keep me warm.
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Raynaud’s phenomenon, a condition where the fingers and toes feel numb, prickly, and frigid in response to cold temperatures or stress, is common among people with scleroderma. The constriction of blood vessels can cause color changes in the fingers. My fingers look purple, yellow, and red when Raynaud’s affects me.

GI symptoms are my constant unwanted companion by Tomisa Starr | December 18, 2024

​I think of scleroderma as my constant companion — one that tries to keep me from having a life of my own. Whenever I want to do anything outside of my home or lead a productive life, scleroderma always seems to hold me back. It’s like the friend I can’t take anywhere because they’re always doing things to embarrass me.

Of all the problems caused by my scleroderma, gastrointestinal (GI) issues are the worst. These are my most embarrassing and painful symptoms.
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Stomach noises may be embarrassing, but they’re a sign that the GI tract is working as it should. These sounds mean that the food we’ve eaten is being propelled through our digestive system and is on its way to the intestines. In the past, I’d occasionally hear my stomach churning whenever I was especially hungry, and I could hear my intestines working to expel gas from my body.
If there’s anything worse than the dismay most people experience when their stomach makes embarrassing noises, it’s when those noises suddenly stop and you realize that something is wrong.

I share my story and hope it inspires someone to help in the fight
​by Sherlene Perkins | May 20, 2024

I love to have conversations with strangers and tell them about scleroderma.

I take time during brief encounters at the library, supermarket lines, the nail salon, and airport gates. The challenge is to provide the information in two minutes or less to spark and keep the listener’s attention. I ask if they are familiar with scleroderma and explain how it sneaks in and attacks parts of the body, causing arthritic pain, loss of fingers and toes, skin tightness, and the hardening of organs. I show them my hands and do the pinch test to demonstrate the thickness of my skin.

I also provide some general terminology while telling them that many patients diagnosed with scleroderma experience skin tightening, Raynaud’s phenomenon, and gastroesophagael reflux disease (GERD). Some may also have lung fibrosis, interstitial lung disease, and pulmonary hypertension. I make a point to mention hip-hop singer and actress Queen Latifah, and explain that scleroderma is what her mom died from. The late actor Bob Saget lost his sister to scleroderma as well.

During my chats, I mention the advocacy organizations I have been involved with that help rare disease patients maintain or improve their quality of life. These include the National Organization for Rare Disorders, Global Genes, the Rare Disease Legislative Advocates, the University of Michigan’s RENEW Scleroderma app, Northwestern Medicine, and Rare Patient Voice.
I will even direct people to my website.
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I encourage them to get involved with helping those less fortunate and explain we need access to better healthcare and other supportive services. I tell them that scleroderma is complicated. At times, the disease is silent, and someone won’t know what’s going on until new symptoms appear or an old one reappears.

In my debut column, I share the hurdles I face in my life as a warrior by Sherlene Perkins | February 19, 2024

Yes, I’m a warrior. I was classified as one long before my scleroderma diagnosis since I’m an African American woman and single mom of two adult children. God has been preparing me to be a great warrior since birth.
Learning that I had scleroderma was a relief. The symptoms started July 2019 after six months of excruciating pain and an inability to use my hands. Amid the diagnosis and symptoms, I found solace in thinking sardonically, “OK. Now what?”

The shock was that the doctors told me there is no cure. They prescribed prednisone to help with inflammation and methotrexate to suppress my immune system.
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Disbelief about my bad luck filled me. Now what?

Patients in interview study talk of the various life changes they have to confront by Marisa Wexler, MS | January 23, 2024

Living with scleroderma requires adapting to changes in a woman’s sense of self, but practicing gratitude and accepting change can help patients reclaim themselves, a study aiming for a “grounded theory” of identify management reports.

Its scientists said these findings may lay the groundwork for future studies aiming to develop interventions to help people with scleroderma hold on to their sense of self while navigating life with the progressive disease.
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The study, “Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women,” was published in the Western Journal of Nursing Research. ​

A columnist praises her husband's approach to being a spouse caregiver by Lisa Weber

We toasted to 18 years as a married couple while looking out over Tampa Bay, Florida. My amazing husband, Ross, had planned out every detail, from the surprise dinner reservations in the city to the romantic sunset-watching at the park. If you know me, you know pulling off a surprise is nearly impossible. Ross endured a week of grilling questions and still kept the itinerary under lock and key.

Although it was a beautiful night, we had to accommodate my blue-toned hands, a result of Raynaud’s, and sit indoors. But we moved forward with the evening and didn’t pay my disease much attention. And even when my gastroparesis limited my options on the menu, we chose to ignore it for the night and focus only on the happy memories we’ve built together.

I even drank wine without worrying about the insufferable inflammation it would cause the next day. Because every now and then, it helps to take a vacation day from scleroderma.