Ask the Doctor: Reducing Relapses in Secondary-Progressive MS
By Dr. Jack Burks
MSAA’s Chief Medical Consultant
Q: I was diagnosed with relapsing-remitting MS in 2005 and have since gone into secondary-progressive MS. I’ve tried several disease-modifying therapies. My walking is still declining to where I use a walker all of the time and a power chair when needed.
I watched a video for Lemtrada and as I understood it, Lemtrada didn’t really work for progressive MS – only relapsing-remitting MS. Am I wrong? I thought of trying rituximab, which I know is not approved but may be available through some MS centers. I know rituximab is being advanced to another drug, but not sure what this is. I live in Springfield, Missouri, and I don’t know of any MS centers in the area. Could you please give me your opinion on which way I should go?
A: I can understand your urgency to explore treatments for your secondary-progressive MS (SPMS).The important issue (not addressed in your question) is whether you still have MS relapses or evidence of “active” MS inflammation on your MRI scan, i.e., if gadolinium-enhanced lesions are seen. If so, different treatments may be worth considering, including Lemtrada® (alemtuzumab) and other disease-modifying therapies (DMTs).
You should review the risks and benefits of all treatments with your doctor, ideally an MS specialist. As for Lemtrada specifically, it has been approved by the United States Food and Drug Administration (FDA) for relapsing forms of MS, which include SPMS with relapses for reducing disease activity, but it was not approved for treating progression. Although one of the two clinical trials compared to a high-dose interferon (Rebif®) did show an effect on MS progression, the FDA usually requires positive results in two separate clinical trials before a medication can be considered for approval. Nonetheless, a discussion of Lemtrada and other DMTs for reducing relapses in SPMS is appropriate.
The new drug that is similar to Rituxan® (rituximab) is Ocrevus™ (ocrelizumab), which was approved by the FDA in March 2017. This is the first time that a medication was approved for the treatment of primary-progressive MS (PPMS) and relapsing forms of MS (RMS), which include SPMS with relapses. No comparative studies have been done to compare Rituxan and Ocrevus.
If you have questions, you might ask your neurologist to explain these treatments in more detail and/or refer you to one of the major MS centers in your area for a second opinion. Many leading MS doctors are within driving distance from where you live. If you are unable to locate a center, MSAA’s Helpline specialists can help you to locate a comprehensive MS center in your area. These MS centers likely have experience with both FDA-approved and experimental DMTs.
Q: I was diagnosed with MS in the summer of 1990 and am now 79 years of age. Approximately 10 years ago, I noticed a terrible burning in my lower back. My doctor prescribed Lyrica, which seemed to ease the problem some, but it caused swelling of my left foot and hand. Since the burning began, it has gradually moved through my buttock and into my thigh, which burns even more. Do you have an idea of what this may be?
A: MS damages myelin – the protective covering or “insulation” of the nerves – that helps speed messages into and out of the central nervous system. Brain cells (neurons) and the connecting wires (axons) may also be damaged. The myelin, neurons, and axons control sensation as well as strength, balance, and other bodily functions. Your burning symptoms may represent increasing MS damage, likely in the spinal cord.
MS-related burning sensations are difficult to treat, but medications such as Lyrica® (pregabalin), Neurontin® (gabapentin), Tegretol® (carbamazepine), and other anti-epileptic drugs may help. Anti-depressant medications such as tricyclic anti-depressants and others may also help. Zostrix® (capsaicin) cream and lidocaine gel are other options. Reducing stress, heat, and exertion also may help, although success may be limited.
Q: I was diagnosed with MS when I was 72, although I had symptoms 10 years earlier, which I ignored. My MS was discovered after I had a brain MRI to diagnose why I was experiencing chronic pain from shingles. I have tried a few of the DMTs, but I experienced side effects that were too severe. Because of high blood pressure and heart problems, I have rejected some of the treatment options.
My question is, have any special studies been done on elderly people who suddenly show symptoms of the disease, to find out if they are a discrete group that should be followed and treated differently? Is there a concern for the effect that these powerful drugs have on older bodies?
A: Those are great questions. MS studies on “elderly” people with MS are very limited. Unfortunately, this important area of research has not been adequately addressed. However, we are now more involved in such studies.
Many individuals with MS are living longer, well into their 70’s and beyond. MS trials with DMT treatments do not include participants at your age. The issue may be to limit the chances of comorbidities (other illnesses) from interfering with treatment effects and/or the potential for an increased risk of side effects. After FDA approval, doctors may prescribe the MS medications according to their clients’ type of MS activity and what they may safely tolerate, taking their age into consideration.
Potential risks versus benefits are very important for doctor-patient discussions, which is referred to as “shared decision-making.” The MS medication discussion becomes more complex in people with comorbidities related to aging. Your general medical condition may also be a factor in deciding the risks.
Q: I am hopeful that you will be able to help explain my troubling experience! I have had MS for more than 25 years, but I have never experienced the event that happened recently. I was waiting to be seated at a restaurant, when I suddenly dropped… like a stone! I had no advance warning, and I didn’t black-out. With assistance, I was able to rise without any further symptoms. I know that issues such as lack of sleep, too much stress, or using too much energy on daily tasks can impact how one feels – and this was certainly my experiences on the previous day. Could these have been contributing factors, or do you know of any other reason why I would drop unexpectedly?
A: I do not know the specific cause of your “drop attack,” but I recommend you see your doctor right away. Drop attacks are frightening and may be related to many medical conditions. Drop attacks, fainting, or any other unexplained collapses need a complete evaluation. In some cases, contributing factors may be low blood pressure, low blood sugar, heartbeat irregularity, seizures, or stressful emotional distress.
Another explanation could be that your legs may be weak from MS. Sometimes people fall when their weak legs give away suddenly and they fall without losing consciousness. But regardless of the cause, all need to be evaluated fully. Again, I recommend you see your neurologist and your general medical doctor or internal medicine specialist as soon as possible.
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c/o Dr. Jack Burks
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Cherry Hill, New Jersey 08034
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Jack Burks, MD is the chief medical consultant for MSAA. He is an international MS neurologist, writer, lecturer, and researcher, who assists with the development of new MS therapies as well as new MS centers. He also advises patients, families, MS organizations, and healthcare groups. Dr. Burks is an adjunct professor at Nova Southeastern University and clinical professor of neurology at Florida International University. In addition, he has authored numerous textbooks, chapters, and articles on MS.