Here is My Question:
I have SPMS and my condition is declining rapidly even though I am on Ocrevus. I have seen recommendations for long-term pulse therapy to treat SPMS (stand-alone or as adjunct to DMT) that call for 3 to 5 days of IV steroids anywhere from 3 to 6 times per year. Specifically, the National Clinical Advisory Board to the NMSS suggested every 3 to 4 months in a 2008 report and the Cleveland Clinic currently suggests every 8 weeks. Do you recommend long-term pulse therapy for treatment of SPMS, and if so, how often would you recommend? I would like to do everything possible to arrest my decline. Thank you.
Many years ago, Donald Goodkin and I did a study at the Cleveland clinic using bimonthly (every 8 weeks) intravenous methylprednisolone pulses (also called high dose steroid pulses; uses 500 to 1000 mg IV x 3 days) to treat patients with what was then called relapsing progressive MS, but is now called secondary progressive MS. The treatment group did experience a slower rate of progression over 2 years, but the treatment never caught on in the MS community for two main reasons; first, steroids even when given as infrequent high dose pulses can be difficult for some people to tolerate and many physicians were unwilling to use this treatment based on their prior negative experience with the use of regular daily doses of steroids to treat MS ; second, the treatment effect from our study was modest. Many people now feel that combining pulse high dose steroid treatment with other disease modifying therapies could provide more meaningful benefits than using pulse bimonthly steroids alone. While combination treatments have been studied and found useful in relapsing remitting MS, this has not yet been done with secondary progressive MS.
We currently have several patients doing well on combined treatment with Ocrelizumab and every 2-to-3-month pulses of high dose steroids but we really have too little data to support generally recommending this treatment strategy.
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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