On choosing medicine’s side effects over scleroderma progression
Difficulty getting to sleep has been the worst side effect of mycophenolate
Written by |
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.
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.
That’s why I’m sticking with my treatment.
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, and are intended to spark discussion about issues pertaining to scleroderma.
Abigail J Currier
Thank you for your story. I just stopped my mycophenolate because I was hospitalized for an antibiotic resistant bacterial infection. I have been taking mycophenolate for about 18 years.
I’ve been taking it for CNSSle now I have Mixed Connective Tissue Disease and I have SSc antibodies. My new Rheumatologist has decreased my myco by 50%. I feel much better. I’ll be 75 in February so that has an affect on my decisions it’s a balancing act
Jay Pennock
Thank you so much for sharing. I was onMycophenolate for six months and it destroyed my gut, wiping out all of the healthy bacteria in it and causing significant G.I. distress. It also ruined my sleep, although nobody wanted to admit that those were interrelated. In fact this website referenced a study saying that most sleep disorders in people with SSCD have sleep issues as a result of poor sleep hygiene. As someone who knows the importance of sleep for myself and my clients, I took great care in creating excellent sleep hygiene, but the medication interfered with my sleep. I have recently started the generic Actemra and have noted great results with my energy, decreased inflammation and stabilization of my skin and lung progression. I highly recommend anybody reading this to consider talking to their rheumatologist about switching to a biologic. Dr Jay
Holly
Thanks to the author for initiating Scleroderma Under Construction. I was diagnosed in 1994 with Systemic Sclerosis limited cutaneous (aka, CREST), and I'm finding that currently, most research and literature pertains to initial diagnosis of the disease, rarely focusing on us old timers.
I'm 52 years old, and being in my 32nd year of living with Scleroderma, I have some stories to tell!! I'm currently recovering from a fractured hip and replacement surgery from early February, 2026.
I look forward to reading more information about living well with auto-immune disease into the twilght years.
Teresa Roman
I WAS DIAGNOSED WITH SCLERODERMA BACK IN 2013 I WAS GIVEN PLAQUENIL FIRST BECAUSE I WAS TOLD THAT I ALSO HAD LUPUS THEY GAVE ME CELLCEPT IT WAS CAUSING ME DIARRHEA NONSTOP AND VOMITTING THEY TOOK ME OFF AND GAVE ME MYFORTIC I WAS TAKING IT SINCE 2017 AND I GOT WORSE WITH THE DIARRHEA VERY BAD PAIN WHEN I USED THE BATHROOM SONSTRONG THAT I WOULD VOMIT I WAS SITTING ON THE TOILET AND VOMITING AT THE SAME TIME THE PAIN WAS VERY STRONG AND BAD LAST YEAR BACK AROUND DECEMBER 28 I HAD TO VISIT THE EMERGENCY ROOM I PASSED OUT IN MY BATHROOM AND ALSO MADE A MESS DIARRHEA EVERYWHERE THE FLOOR THE BATHROOM RUGS I WAS GIVEN ANTIBIOTICS BECAUSE THE MEDICATION WAS CAUSING ME TO HAVE UTI I HAD A FEVER SO SINCE DECEMBER 28 IM NOT TAKING ANYTHING I RATHER HAVE THE DISEASE TAKE ME THAN TO LIVE THE WAY I WAS FEELING EVERY DAY I LOST A LOT OF WEIGHT I COULD NOT SLEEP I COULD NOT EAT ANYTHING I PUT IN MY MOUTH MADE ME NAUSEOUS I WAS HAVING ENDOSCOPY EVERY TWO YEARS AN COLONOSCOPY TOO I DECIDED THAT I DID NOT WANT TO LIVE THE TEST OF MY LIFE THIS WAY IM EATING WELL SLEEPING I HAVE MORE ENERGY I HAVE A TEST FOR MY LUNGS IN JUNE LETS SEE WHAT THEY WANT TO GIVE ME I SM THINKING OF GOING TO A HOLISTIC DOCTOR IT WAS RECOMMENDED FOR ME BY MY FAMILY I AM DONE MAKING THE FARMACÉUTICAL MORE MONEY AND THE DOCTORS THEY PRESCRIBE THE MEDICATION AND WHEN GO BACK TO SEE THEM AND YOU SAY I HAVE THIS AND THAT THEY DO NOT TELL YOU THAT IT IS FROM THE MYFORTIC CAUSING ME ALL THOSE ISSUES I FEEL FINE SINCE DECEMBER NOT TAKING BLOOD PRESSURE MEDICINE EITHER MY BLOOD PRESSURE IS NORMAL I WAS FAINTING AND MY BALANCE WAS BAD BECAUSE THE BLOOD PRESSURE MEDICINE WAS LOWERING MY BLOOD PRESSURE I STOP THAT TOO THANK YOU GOD AND THANK YOU FOR LETTING ME VENT I DONT TRUST DOCTORS NOW FOR SO MANY YEARS I WAS MISERABLE THERE IS NO CURE IT IS ONLY A BANDAID A PACIFIER