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Although I have been diagnosed with fibromyalgia and small fiber neuropathy, I have blurred dim double vision in my left eye which is to common to both of these. Could this indicate MS? I have had a total spine and a head MRI but nothing showed up on these. Answer: If your MRI brain and spine were normal, then it is unlikely the symptoms you are having are due to multiple sclerosis. If your vision problems are getting worse however I do recommend you see an ophthalmologist to determine the cause of your vision problems. Benjamin Osborne, MD Associate Professor of Neurology and Ophthalmology Director, Neuromyelitis Optica (NMO) and Neuro-Ophthalmology Clinics Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital
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Are there any known or theoretical problems with combining Tysabri and Nucala or Dupixent?4/29/2020 Question:
I re-started Tysabri in 1/19 after 6 years on Tecfidera because I couldn’t deal with the GI effects any more. I picked 6 week intervals due to JCV titer 2.5-3. I started Nucala in 6/19 due to worsening asthma (oral prednisone needed with every URI and 1st ever asthma hospitalization in 1/19). Neither my pulmonologist nor my neurologist knew of any specific issues though neurologist is clearly not happy to have me on both. Actually he’s just not happy to have me on Tysabri period and keeps pushing Ocrevus. So I wrote to you again last month. Since then and after reading what you have written about Ocrevus and Coronavirus I decided that Ocrevus was not for me even without Coronavirus because I had another 4 day asthma hospitalization in January 2020. Both admissions were for exacerbation triggered by seemingly ordinary colds. Because I have done fine after 3-6 month Tysabri holidays during the first 6 years I was on it (2006-2012) I also decided to forgo my April 9th Tysabri infusion. I am 62, have bad asthma despite aggressive maintenance regimen and have hypertension and Type II diabetes (Rx w/ Trulicity) though both are under excellent control (HgbA1c =6.7 12/29/19 despite being on 60mg/day prednisone the previous 2 weeks). Coronavirus would probably kill me. And a Gerontologist friend from college got Coronavirus from a nursing home patient they thought got it at a dialysis center. So staying home seemed like the best choice. I have not left home since 3/17. My husband has worked from home since then and does groceries every 7-10 days. But during my January hospitalization there was discussion of possibly switching from Nucala to Dupixent which is also being investigated as a hair loss treatment. My hair has been thinning for over a year to a degree that has become pretty distressing so I am interested in trying Dupixent instead of Nucala. But the question about interaction with Tysabri remains. Are there any known or theoretical problems with combining Tysabri and Nucala or Dupixent? Thanks for your help. Answer: Both Dupixent and Nucala are monoclonal antibodies that inhibit the overactive Th2 immune responses associated with atopic dermatitis, asthma and various diseases medicated by eosinophils. Dupixent inhibits IL-4 and IL-13 whereas Nucala and several other products inhibit IL-4. Interestingly, Tysabri treatment in MS patients tends to increase circulating IL-4, IL-13 and IL-5 levels as well as several proinflammatory cytokines. This effects occurs rapidly after initiation of treatment with Tysabri and is maintained for over a year for the elevated levels of IL-5 and IL-13. So is it possible that re-initiation of Tysabri treatment aggravated your asthma. There are reports of this occurring in people on Tysabri and even rare reports of eosinophilic pneumonitis. So perhaps is not a bad idea for you to discuss discontinuing the Tysabri with your physician. You have not rebounded in the past when stopping Tysabri and you are over 60 with a type of MS that tends not to respond well to Tysabri. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I read that those with MS should not take supplements that support the immune system. Is this true? Answer: The question of immune boosters in MS is a complicated one. On one hand, there is evidence that multiple sclerosis patients have and overactive immune system. In situations where there is a dysfunctional ramped-up immune system that results in damage to brain and spinal cord cells it is not recommended to do anything to boost that immune system further. In fact, boosting the immune system has the potential to make some disease modifying therapies less effective. In particular, we should be cautious with certain supplements. Herbal supplements such as echinacea, elderberry, andrographis, astragalus, DHEA, CoQ10, ginseng, and gingko biloba should generally be avoided. Certain mushroom products including shiitake, tremella, maitake, and turkey tail have been identified as having immune boosting properties so should not be consumed in large quantities when immune systems are in overdrive. Garlic consumed in large quantities, has been shown to prevent colds and flu in individuals with immune systems that are not compromised. On the other hand, there are many activities and life style changes that are proven to promote a healthy immune system. Exercise can both boost and modulate in a normal behaviors our immune systems by enhancing production of certain regulatory cells. Exercise also improves mood, circulation, and respiratory function (essential in combating airborne illnesses such as colds and flu). Smoking is another factor to avoid. Smoking or vaping strips protective cells from our respiratory tract, which opens it to the chance of a virus or bacterial attack. Stress reduction plays a role in how our bodies are receptive to infection. Persons with lower stress levels are not nearly as prone to infection as those for whom stress or anxiety are a problem. Lastly, sleep goes hand-in-hand with stress reduction for helping arm us to fight illness. Augusto A. Miravalle, MD Clinical Associate Professor of Neurology, University of Colorado Here is My Question:
Does a MS lesion cause increased period cramps and pain? Answer: There is no evidence that MS directly affects menstrual cycles or perimenstrual symptoms. Certain medications used to treat MS can affect menstruation and menstrual symptoms, most notably corticosteroids. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Should I continue to take cellcept or stop because of the virus. Answer: Do not stop any medicine without consulting with the specialist who prescribed it. Doctors constantly balance risks; in this case the risk of staying on cellcept versus the risk of stopping it. I do not even know your neurological diagnosis and risks factors for worsening of this condition, to say nothing about your co-morbid medical conditions and other risks factors for a severe COVID-19 infection. There is no blanket policy on any individual medication plan during this pandemic. Call your doctor today. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I am an MS spouse. My question is whether you are familiar with some of the recent work on photobiomodulation and MS, and whether you have a point of view about the promise of this treatment modality. My wife has had the benefit of the best neurologists, the best DMTs (currently Ocrevus), and has done everything possible from a lifestyle perspective to combat this disease (diet, exercise, professional and social engagement, ultra-positive attitude), yet progression continues. We are always on the lookout for something that can help. Is photobiomodulation worth giving a try? Many thanks. Answer: Thanks for your question. I am not aware of any recent published work on the therapeutic value of photobiomodulation in people with Multiple Sclerosis. There are some preliminary studies of this treatment modality in a mouse model of inflammation in the central nervous system, but these are not studies of Multiple sclerosis. We can not provide any medical advise on the subject without some therapeutic information to guide us. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I've had 2 half infusions of Ocrevus for PPMS. Out of 7 symptoms all are gone except drop foot. I'm hoping to see better mobility with full infusion in August. I've only partial foot drop so if lesions are shrinking foot drop should continue to improve. What are your thoughts please. Answer: If you are asking if I think it is likely your symptoms will continue to improve with further Ocrevus treatments, I have no data to answer this question. Almost all of our studies in MS are designed to determine if the treatment delays or prevents disease progression, not to determine if the therapy is associated with either transient or continued improvement in function. Many studies will report post hoc analyses that suggest improvement, but these are often difficult to interpret particularly in relapsing MS patients, who can and often do improve spontaneously even when receiving placebo treatment. I am not aware of any post hoc analyses from the Ocrevus primary progressive phase III study that demonstrated any continued improvement in function. The relapsing remitting Ocrevus studies reported a marginal benefit on disability improvement compared to the control group that received Rebif. Specifically, 20.7 % of Ocrevus RRMS patients experienced disability improvement compared to 15.6 % of Rebif patients (33 % difference). This is not a result that we can necessarily apply to primary progressive patients. I am happy to hear of your positive results with Ocrevus and hope you continue to see improvement in your symptoms and function. Keep working hard and don't discard the importance of your hard work and positive attitude on achieving your goals. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I am a health care worker with untreated R.R. M.S, possibly APS too. I also have thrombophilia, gut/gall bladder issues and my blood pressure has always been high. I declined meds to treat. Am I at more risk from COVID-19? My employer wants me to come into work but I have been working from home. I really need advice. Thank you. Answer: It doesn't sound like you have significant disability or any evidence of immunosuppression. MS itself is not a risk factor for severe COVID-19 infections and you do not seem to have any of the other known risk factors for severe COVID-19 infections; namely, age over 60, cardiovascular disease including documented hypertension and diabetes. If you must go to work, follow the guidelines for proper use of PPE, distancing when possible, using gloves and washing often. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Here is My Question:
Hello, I am a Beth Israel patient in Boston/Lexington. Dr. Kinkel ordered my 1st Tysabri treatment in 2010. I had an increase in chest infections the first few years of treatment, but antibiotics always cured it. I haven't received ANY vaccinations/flu shots in 20 yrs. due to Guillain-Barre with Pneumo vax/Flu shot. Currently, I am on Tysabri every 6 wks. to decrease BV. I am 52. My daughter and I have T1 Diabetes. My daughter also has life-threatening food allergies, and COVID risk is REALLY high right now. My next Tysabri infusion is in 1 week. How many weeks can I miss before rebound? Answer: Hello there former patient. We do have pretty good data on the amount of time required for disease activity to return after stopping Tysabri infusions (assuming you do not start another treatment to prevent this from occurring). Approximately 30 % of people who stop Tysabri will experience a return of disease activity. This most commonly occurs in people with MS who experienced significant disease activity in the year prior to starting Tysabri, defined as a relapse or new active MRI lesions. Approximately, 10 % of these relapses after stopping Tysabri are moderate to severe relapses. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
My daughter is 19 and just been diagnosed with MS. Her doctor wants her to treat her with Tysabri. She has minor symptoms at the minute but has numerous brain lesions. I know this treatment is normally a second line treatment. Do you think this is the right treatment for her? Answer: Tysabri has been used as a first line treatment in appropriate cases of MS for many years. The definition of "appropriate" varies among MS experts but usually involves the following criteria:
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Wearing a mask potentially serves three purposes during the COVID-19 pandemic
When you are in a lower risk location (usually because you can keep your distance easily) like shopping for needed groceries, any covering made of tightly woven cotton will do, especially if it is double layered. This could be a bandana or a scarf or a home made mask. If you feel your sewing skills are up to it, I've posted easy mask making instructions from the New York Times. We made these in our home (at least my wife did) and they work quite well. Remember wearing a mask ONLY works if you also -Keep social distance at all times (6 feet minimum) -Never touch your face without cleaned hands -Wash your hands frequently (soap and water for at least 20 secs) -wash all exposed surfaces (cell phones, door knobs etc) See the attached file below to see how to make your own mask. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego 
Here is My Question:
Hi, I’m 38 and I have RRMS and have been on Ocrevus since last May. I have many symptoms and am on disability especially due to my cognitive problems. Things may have been less noticeable on Ocrevus but I have now missed my 2nd full dose and am have terrible trouble with memory, understanding, and “time” if that makes sense. I am also having a lot of physical issues like leg weakness and muscle spasms that I had before but not this bad. The cognitive issues are what’s getting me the most. Could it be related to delaying my Ocrevus? Should I consider just doing the infusion now and isolating more diligently? I have a terrible time getting through to my neuro which is so hard during this time. I’m just terrified that things will get worse if I delay much further. Maybe it doesn’t make much sense but is this possibly something related to the delay in the dose? I live in Louisiana but not in New Orleans. But regardless, the COVID is a big issue around here. Answer: Thanks for your question and including so many useful details. It sounds like you received your first cycle of Ocrevus in May 2019 (the two 300 mg doses are the first cycle) and cycle # 2 probably in November 2019. If this is correct you are still within 1 month of your 3rd cycle (your second full dose infusion). If my math is correct, I would be very surprised if your current symptoms are related to a reactivation of your disease. There are many other possibilities and I would encourage you to discuss this further with your MS Specialist. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I can not stop sweating or sleep at night because of it...what can I do? Answer: You should contact your Primary Care doctor about your night sweating. There are many many causes of night sweats, and most of them have nothing to do with your MS. Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego |
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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