What should I do about worsening scleroderma symptoms in my hands and feet despite taking Cellcept (mycophenolate mofetil)?

Urgent Reassessment and Treatment Escalation Required

You need immediate contact with your rheumatologist to escalate therapy beyond Cellcept, as worsening scleroderma symptoms despite mycophenolate mofetil (MMF) treatment indicates inadequate disease control and warrants adding rituximab, tocilizumab, or switching to cyclophosphamide. 1

Understanding Your Current Situation

Your worsening symptoms despite being on Cellcept (MMF) represent treatment failure. While MMF is the most common first-line drug for skin manifestations in diffuse cutaneous systemic sclerosis (dcSSc), it has only weak effects on skin disease, and many patients require treatment escalation. 1

Critical Timeline Consideration

• MMF typically shows improvement as early as 3 months, with continued benefit through 12 months of treatment 2
• If you started Cellcept several months ago and are experiencing worsening rather than improvement, this indicates your disease is not responding adequately 2
• The pain, numbness, tingling, and burning you describe, along with functional limitations in gripping, walking, standing, writing, and typing, represent significant disability requiring urgent intervention 3

Immediate Next Steps

Contact Your Rheumatologist Within 48 Hours To Discuss:

Treatment escalation options when skin worsens on MMF include: 1

• Adding rituximab (anti-CD20 biologic) - shown to improve skin scores by 2-8 points in clinical trials 1
• Adding tocilizumab (anti-IL-6 biologic) - demonstrated statistically significant skin improvement in controlled trials 1
• Switching to cyclophosphamide - resulted in 73.6% of patients showing skin improvement with reduction in skin scores by approximately 5 units over 1 year 1
• Considering autologous hematopoietic stem cell transplantation (AHSCT) if you have rapidly progressive early dcSSc with very high skin scores or moderate skin involvement with worsening interstitial lung disease 1

Assessment Your Rheumatologist Should Perform:

Evaluate for internal organ involvement that may be progressing: 1

• Pulmonary function testing - interstitial lung disease occurs in approximately one-third of SSc patients and has become the most common cause of SSc-related death 1
• High-resolution chest CT - to assess for lung fibrosis, especially if you have anti-Scl-70 antibodies 1
• Echocardiogram - to screen for pulmonary arterial hypertension 1
• Renal function monitoring - to detect early scleroderma renal crisis 4

Symptomatic Management While Awaiting Treatment Escalation

For Hand and Foot Pain/Stiffness:

Apply urea 10% cream three times daily to address the tightness and hyperkeratosis in your hands and feet 1, 5

• This helps maintain skin hydration and reduces painful hyperkeratotic changes 1
• Safe for long-term use with no reports of toxicity 6

For severe pain, your physician may prescribe: 1

• Topical high-potency corticosteroid twice daily for inflammatory component 1
• Lidocaine 5% patches or cream for neuropathic pain (numbness, tingling, burning) 1

For Raynaud Phenomenon and Digital Ischemia:

If you're experiencing color changes or ulcers on fingertips: 1

• Ensure you're on a dihydropyridine calcium channel blocker (especially nifedipine) as first-line therapy 1
• If inadequate response, phosphodiesterase 5 inhibitors or intravenous iloprost should be added 1
• Bosentan can reduce development of new digital ulcers 1

Critical Pitfalls to Avoid

Do not delay seeking treatment escalation - scleroderma can progress rapidly, and early aggressive intervention improves outcomes, particularly in the first 3 years of disease when prognosis may be worse 1

Do not assume MMF just needs more time - if you're worsening rather than stabilizing or improving after several months, this indicates treatment failure requiring escalation 1, 2

Do not ignore systemic symptoms - new shortness of breath, persistent cough, or sudden blood pressure changes require immediate medical attention as they may indicate life-threatening complications 1

Why Standard MMF Monotherapy May Be Insufficient

Current evidence shows that most treatments for skin disease in scleroderma have only weak effects, and new paradigms such as combination therapy or induction therapy are needed. 1 Your case exemplifies this limitation - you're experiencing progressive disability despite standard first-line therapy, which is precisely the scenario where guidelines recommend escalation to biologic agents or more aggressive immunosuppression. 1

The functional impairments you describe (difficulty gripping, walking, standing, writing, typing) represent significant quality of life deterioration that justifies aggressive treatment escalation rather than continuing an inadequate regimen. 1, 3