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For 11 year's I been suffering from Chronic Migraine and 2019 I started difficulty walking, sensitivity to humidity, pins and needle, pain, blurred vision, electrical shock pain along spinal cord. Recent MRI showed white matters, other blood tests were negative for other conditions. One neurologist told me it is PPMS and the only treatment he gave was Fampyra. How can I be sure if I have PPMS. I don't have a neurologist. Thanks Answer: You need to see a neurologist, preferably one specializing in MS, for a detailed history, neurological examination, review of MR imaging studies of the brain and spine and spinal fluid analysis. A diagnosis of primary progressive MS requires spinal fluid analysis in most cases. Misdiagnosis is high if the specialist is not methodical in their evaluation. Revere P (Rip) Kinkel, MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego
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Here is My Question:
I take Ocrevus, and if there's less of an antibody response to the Covid vaccine because of this, will a third shot make a difference? Answer: Vaccine responses are complicated and depend on many environmental (such as exposure to B cell depleting agents like Ocrelizumab, rituximab and ofatumumab to name a few) and intrinsic factors (such as age, genetics). One hypothesis is that the effectiveness of a vaccine response results from a race between the reactivation of immune memory and the spread of the virus after exposure. Now this is where it gets a little complicated, so I will try to simplify things. B cells ( the cells destroyed by Ocrevus, rituximab and ofatumumab )are essential for early vaccine effectiveness, particularly against viruses and other pathogens that are outside of your cells and spreading throughout the body early in an infection ( so call incubation phase). Some B cells turn into plasma cells after vaccination. Only plasma cells produce the antibodies that halt the initial spread of a viral infection. T cells are essential for destroying pathogens inside of cells or an established infection. Therefore, T cells are more important later in the stage of viral infection. Both cell types work together to create a maximal and rapid response. Interestingly, the plasma cells, that produce the antibodies measured in blood tests which check for your immunity against viruses, are not destroyed by Ocrevus and other medications that target the CD20 protein. This is because Plasma cells do not express CD20 on their cell surface. Unfortunately, plasma cells created by an initial vaccination (what is called priming) are short lived. This is one reason you typically need a second vaccine shot. So, it is reasonable to expect that medications depleting circulating B cells will decrease vaccine associated antibody responses. How much this happens will depend on how long you've been receiving the B cell depleting drug and how recently you've received a dose, as well as many other factors such as your age. The end result is that antibody responses to a vaccine, the type of response required for early elimination of the virus after exposure, will be lower and it will be more difficult for people exposed to the virus to clear an infection rapidly. This is possibly one of the reasons that immunosuppressed people do not clear the COVID19 virus rapidly and may spread the infection to other people for a longer period of time. How much B cell depletion will affect T cell responses to the virus, the responses required to combat an active infection after it is established and you are sick, is still unclear and being sorted out. We suspect that diminished vaccine responses will require some people receiving B cell depleting therapies to receive subsequent booster vaccines in the future. Stay tuned for more information. Revere P (Rip) Kinkel, MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Is it possible for someone with MS to decline after switching to another DMT like Ocrevus?3/26/2021 I started on Rituxan in 2017 and had two infusions, I then changed over to Ocrevus in 2019 and have had a total of four infusions. In looking back it is evident that clinically, I have declined the last few years. I have also seen on several different forums that some people tend to decline when on Ocrevus. (Specially walking ability among other symptoms) My question is this, in your experience, do you see this decline in some of your patients? My MRIs look good as far as no new lesions and no evident disease activity but I just do not feel well. Walking difficulties, more and more pins and needles feeling all over my body, etc.
I am thinking that this last infusion I just had a couple of weeks ago will be my last. Thank you. Answer: I’m sorry to hear of your struggles. To answer your question, yes, patients can progressively worsen even on the best therapies available. In the case of b-cell biologics like Ocrevus, they have shown the ability to *slow down* the rate of progression in MS. Unfortunately we do not have a therapy that has proven to stop progression altogether in a clinical trial setting (of course some cases of MS may stop progressing by themselves, but that is not universally experienced). Before deciding to come off therapy altogether, you may want to review your trend of progression with your current neurologist and together made a judgement if the rate of worsening over time is at a slower rate than what would be expected not on therapy or otherwise. As you know, I tend to collect a lot of measurements when I see my patients in clinic (typically a really good exam once a year minimum). Your new neurologist could compare my recorded metrics I found with you and repeat the tests for a comparison to help you in your decision. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is it important to know definitively if a person has ‘mild’ MS? For example, if it has been suspected for a number of years, but has not caused significant problems, does it really matter? Could a neurologist make a case for not diagnosing unless treatment is warranted? What is the benefit of knowing for sure? Answer: Our ability to predict the future severity of relapsing remitting (RR) MS is limited during the 5 to 10 years that follow an initial diagnosis, which can itself take several years. A good rule of thumb for RR onset MS is the following.
Revere P (Rip) Kinkel, MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
After being diagnosed with Open Angle Glaucoma for 10 years, I've recently found out that I do not have it. There is a situation with my optic nerves, that a Glaucoma Specialist seems to think it's an affect from multiple sclerosis. I was told years ago that I had MS but never sought treatment for it. I went to a neurologist and he scheduled an MRI. He also did blood work. I couldn't proceed with the MRI, so I'm waiting to obtain an appointment with open MRI. In the meantime, my labs are back and I tested positive for JCV ANTIBODIES. My level is 3.45. Can you explain this information to me? I am in a panic and very nervous as to what this means.. Thank you. Answer: You have asked several different questions which I will try to address:
Benjamin Osborne, MD Director, Neuromyelitis Optica (NMO),Neuro-Ophthalmology Clinics and MS/Neuro-immunology Fellowship Director Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital Question:
Is the rate of PML in patients after 2 years (1/100) of Tysabri when it’s administered at the 4 week interval dose or at the extended 6 week dose? I found charts of this but wasn’t sure of the interval being accounted for. Thanks again for your help and time, the content on this site had been very helpful for me and I’m sure others as well. Answer: The risk of PML after 2 years of treatment with Tysabri, when it is administered using the standard dosing regimen (300 mg iv every 4 weeks), is approximately 1 in 100 (1%) for people with a JCV index > 1.5 and no prior history of immunosuppression and approximately 1 in 100 (1%) for people with ANY positive JCV Index and a prior history of immunosuppression. Revere P (Rip) Kinkel, MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Can I take the morning-after pill while I'm on Tecfidera? Answer: There are no drug interactions between Plan-B and Tecfidera A. Scott Nielsen, MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
I’ve been stable on Copaxone since my diagnosis about 5 years ago, my latest MRI a few weeks ago showed 2 new lesions. I then changed doctors after finding a practice that seems to treat the whole person and not just the condition, and as this has ramped up my anxiety it seems to be more of the type of care I need. This new doctor is a big believer in Tysabri extended interval dosing and seems to have much success with it (several hundred patients, majority 8+years, many with high JCV titers) and feels this would be the beet route, with Vumerity as a second option but not nearly as favored. Since my diagnosis, from what I’ve read online in my panic-googling moments, Tysabri has always felt like the scariest option and when he named it my heart sank. Due to Covid vaccine concerns, he doesn’t suggest now is the time for Ocrevus or Kesimpta, which is what I was leaning towards. I am JCV+ with a titer of 2.8 (when tested 4 years ago) and I’m terrified of PML. The new Dr, and again my panic-googling, show that the EID of Tysabri significantly reduces the risk, and the doctor said they would do bloodwork and MRIs every 3 months along with me reporting any issues as soon as I notice them. Does this then keep me in a safe place for moving forward with Tysabri or should I require more monitoring, or a different med altogether. So many have a PML risk. It seems to be a very effective med to help freeze any progression and maintain my quality of life. The studies I’ve read all seem to show greater increase risk if staying on the med for more than 2 years, and it seems to me it’s difficult to safely switch to another effective DMT after this one without triggering progression. I just don’t know how to know what’s best to make these decisions, any insight is greatly appreciated! Answer: So much information can be overwhelming to anyone, so let's take apart your question and answer it logically.
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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