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Hi I have been on cellcept for 11 years now. For the first 6 years I did not have a relapse and my dosage was reduced. But 5 years ago got a relapse and have been back on the original dosage and now every year I get a small relapse. I have been advised to think about Ocrevus. I wanted to know if there will be some side effects and if it is possible to go back from Ocrevus to cellcept if needed. Thanks for the inputs. Answer: Yes, you could in theory go back to cellcept if you wanted to. Ocrevus is a b-cell biologic to treat MS (and there are others including Rituximab and Ofatumumab). These therapies are considered highly effective in the treatment of MS while cellcept has been used off label for more mild cases (although not used much now due to the myriad of approved therapies for this disease). Cellcept is also used for MS mimicking conditions such as NMO. I’d suggest speaking with your treating provider to better understand the recommendation to switch (is it due to confirmed new inflammatory disease or just because of various symptoms in the absence of inflammation on your MRI scans or confirmed by neurologic examination in the clinic?). You can read more about the b-cell biologics and efficacy, safety, side effects by searching under “Rituximab” which is the oldest such therapy, or “Ocrevus”. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente
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I was just diagnosed with MS and was told I am at the early stages. Will medication actually slow progression or does this depend person to person? They prescribed Kesmipta, how well is this new injection? Answer: Catching the MS disease process early is important since all therapeutic options (called disease modifying therapies or DMTs) only help prevent new inflammatory damage to your nervous system. At this point in time, there is no reparative therapeutics. Based on various prognostic factors, some patients may be at higher risk of significant disability in the years to come IF they are not started and maintained on a good DMT. Kesmipta is the newest in a class of highly effective DMTs called the b-cell biologics. These are very powerful therapies that have the potential to put the patient in a permanent remission state that is called “no evidence of disease activity”. Kesmipta is given by injection (at home). If you search this site for what the b-cell biologics can do for MS, it is best to search using Rituximab (or Rituxan) which was the first approved b-cell biologic. The other b-cell therapuetics are given by infusion at infrequent intervals (ie, once semiannually or potentially annually). A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
The new theory that I just read is that N-Acetylglucosamine, which is sold over-the-counter, might promote myelin repair. Any truth to this? Any harm in taking it? Answer: Recent pre-clincal research using mice demonstrated an effect of N-Acetylglucosamine (GlcNAcon) on remyelination and motor function. This is the first step in the investigative process and generates the hypotheses: does N-Acetylglucosamine improve remyelination in MS patients? Does N-Acetylglucosamine improve neurologic function by improving disability scores? At present, there are no studies that answer these questions (in humans with confirmed MS). There is scant information about acute toxicity potential in humans and more in mice. These published reports suggest it may be safe at the doses previously studied over the course of a few months; however, further investigation in humans is needed to confirm this at proposed doses and for long-term exposure that would be expected for possible treatment in MS. At present, I cannot recommend picking this up over the counter and taking this for remyelination due to the lack of data. For instance, what dose would be sufficient? For how long would the GlcNAcon need to be taken and at what intervals? Is it safe to do so once we have a better idea of the answers to the first two questions? These will need to be fleshed out through the scientific method. For those interested in eventually being involved in research with GlcNAcon in the future, you can monitor clinicaltrials.gov (and search for MS and N-Acetylgulcosamine) for opportunities in your area. At present, there are no registered studies, but that is likely to change in the future when investigators secure funding to organize clinical testing and answer these important questions. Here is My Question:
Do we need to go for a spinal tap test to detect MS if the result of my brain and spine MRI came back negative? Answer: Analysis of the spinal fluid by way of a "spinal tap" or lumbar puncture is very useful when imaging studies do not clearly explain or diagnose a process that appears to be coming from the central nervous system or the lining (called the meninges) around the central nervous system. 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:
For the last year and a half I have felt a burning sensation in my right outer thigh intermittently that lasts for 15-20 seconds and goes away with little movement. It does not occur every day, and happens only for a particular standing position for more than 10 minutes. It subsides automatically when I sit down. I did the contrast spinal and brain MRI which came back normal, The result of the evoked potential test and nerve conduction test also came back negative. I am still having doubts of having MS, what's your thought on this? Answer: The outer thigh is an area that transmits sensations to the brain through a peripheral sensory only nerve branch called the lateral femoral cutaneous nerve. This nerve is often compressed under the inguinal ligament or damaged by diabetes. There are of course many other reasons this nerve could be irritated or damaged, but these are the most common reasons. A neurologist would not normally ascribe your symptoms to a problem in the central nervous system- such as multiple sclerosis- unless you had other symptoms or findings on examination that pointed to a problem in the central nervous system. A problem involving the lateral femoral cutaneous nerve could be confirmed with nerve conduction studies, but this is usually a clinical diagnosis. It is typically called meralgia paresthetica. 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:
Can MS people take Pfizer’s coronavirus vaccine? Answer: Yes, MS patients will be able to take the Pfizer COVID19 vaccine, since it is NOT a live vaccine 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 had a stroke on 08/17/20.I had MRI’s which show a large lesion on my spinal cord L3-L4. Also my spinal tap shows higher protein levels in my CSF. Prior to stroke my balance was off and was falling. Since my stroke I have chronic weakness in left arm and limited mobility. I still have the problem and am now going on 3 months since the stroke. From what I’ve read it’s uncommon to be caused by my stroke. Both my legs are chronic with numbness which I’ve had for roughly over 12 months and I'm still weeks out from seeing my neurologist. Would so appreciate answers if I have MS. While in the hospital the neurologist said it’s likely that I do. I would just like to confirm it. Also, are flare ups mainly old symptoms that come back or do they mean a new lesion. Answer: I would like to be able to assist you with your questions, but much of the information you have provided does not make sense. For instance,
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:
What do you know about elezanumab and PPMS? Answer: Elezanumab is a monoclonal antibody that binds to and inhibits RGMa (Repulsive Guidance Molecule) on Axons. The RGMa molecule inhibits axonal outgrowth following injury to the central nervous system which in turn limits repair and recovery. It is thought that inhibiting this molecule may enhance natural repair to damaged areas in the nervous system. It is being tested in patients with Primary Progressive MS (PPMS) but we have no results at present. You can find more information about the trial at Clinicaltrials.gov 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:
What is a high level of JCV? My levels continue to go up. Answer: The data suggests that a high JCV index is any single measurement value greater than 1.5. 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 have MS and want to know if I can be a kidney donor for my husband. Also can I donate plasma if I am taking Copaxone for my MS? Answer: This is a good question for your husband's transplant doctors. I see no reason why you cannot donate a kidney for your husband if all other requirements are met. This usually means that you are healthy enough to donate and you are a good match. 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:
How likely is it to get shingles when taking Tecfidera? Answer: There are no reports of an increased risk of shingles in people with MS taking tecfidera compared to people with MS taking either a placebo treatment (in a clinical trial) or other disease modifying treatments. 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 work outside 4 hours a day. I am required to wear a mask at all times. When I am done I have a bad headache and I feel weak (my legs are like noodles). Does wearing the mask effect my MS? Answer: Wearing a mask should have no effect on your MS. Check the air quality in your area using the AirNow app from the EPA (download from the app store). Poor air quality from high ozone or particles could be contributing. You should also contact your primary care physician about these symptoms Good luck 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's MRI says the T2 and flair hyper intense lesions are 15-20 in the supratentorial white matter suspicious for demyelination. Does this mean it is likely MS? She is only 15. Answer: There are many causes of T2/FLAIR hyperintense lesions in the supratentorial white matter of people at any age. The differential diagnosis depends on the medical history and symptoms, exam findings, family medical history and, to a great extent, on the age of the individual. The presence of T2/FLAIR hyperintense lesions is by no means diagnostic of MS by itself. 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 will start a laser hair removal next week. I have been taking Gilenya for 8 years. Is there any danger? Thank you! Answer: I know of no contraindication to laser hair removal related to the use of Gilenya Good luck 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:
Would Kesimpta be a good alternative to Ocrevus if I'm worried about potentially being exposed to COVID during an infusion? Do you know if I might experience a rebound after discontinuing Ocrevus? Is there an optimal amount of time after stopping Ocrevus before starting Kesimpta? And lastly, does the fact that Kesimpta has to be administered every month vs every 6 months mean my immune response might come back more quickly if I get COVID and stop taking it while I fight the disease? Many thanks! Answer: Very good questions about switching from Ocrevus to ofatumumab (Kemsimta). Here are my responses
Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
How come I get cuts after my bruises goes away? Answer: Questions regarding cuts and bruises should be directed to your primary care physician since there are many potential explanations most of which have no relationship to your multiple sclerosis. 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: Does the number of oligoclonal bands found in CSF determine the prognosis of your MS? What is an”median” number of bands found in someone with MS? My LP revealed 14 bands and I wondered how this relates to my MS diagnosis and prognosis? Answer: The term "CSF (Cerebrospinal Fluid) Oligoclonal bands", or sometimes shortened to Oligoclonal bands, refers to the presence of several unique immunoglobulins (also called antibodies) in the spinal fluid that cannot be identified in a matched plasma sample. This is a qualitative test that requires some experience for the identification of the individual band number in the sample. The proteins within the body fluid being sampled (plasma or CSF or whatever) are separated on an agarose gel by their size and electrophoretic properties (remember, proteins have an electric charge) and stained for visualization. The staining process reveals the migratory location of the various proteins on the gel for visualization (see below). Counting individual bands can be difficult if they are faint or overlap with other protein bands, but various techniques have been developed over the years to improve the resolution of the assay. The picture that follows (reproduced many times in other publications and online) gives you an idea of the qualitative nature of the assay. The left-hand panel for both the normal and abnormal patient (abnormal referring to the one with multiple sclerosis) is the CSF banding pattern and the right-hand panel on each side is the plasma sample from the same person. It is easy to identify the different staining patterns in the CSF immunoglobulin region from the person with MS compared to the "normal" person without MS (both labeled), but I challenge you to count the number of bands in this region from the CSF sample that are not present in the adjacent plasma sample.  So, this is how the assay is done. What does it mean? The presence of 2 or more CSF oligoclonal bands is a sensitive diagnostic marker for MS in the correct clinical circumstances(positive predictive values of 95 % in some circumstances).This means that CSF oligoclonal bands can be seen in other conditions and cannot be used alone to diagnose MS but is extremely useful and predictive in the right circumstances.
More recent studies suggest that the number of oligoclonal bands is predictor of disease severity. In one study of people with a first attack of MS, the median number of oligoclonal bands at onset was 8 and those individuals with more than 8 oligoclonal bands at onset experienced more disease activity. In another study of people with known MS on DMTs, those with greater than 10 oligoclonal bands experienced a worse prognosis. At present there is no accepted cut off for a number of oligoclonal bands that indicate a worse prognosis. We prefer to use several pieces of information, including the number of CSF oligoclonal bands, to make this assessment. This information may include other biomarkers such as CSF free kappa light chains or serum neurofilament light chain measurements. These are particularly good measures because of their associations with disease activity and severity and the quantitative and sensitive nature of the assays used. We also use demographic features (age and sex), clinical features, responses to prior treatments and MRI measurements to help with prognostication. Hopefully, we will be able to develop a panel of measures in the future that when combined allow us to both prognostic risk of disease activity and response to treatment. 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:
MS treatment during Breastfeeding Hi! I got pregnant 3 months after my last Ocrevus infusion. I am 13 weeks now and feeling ok without receiving any MS treatment. However, I am aware of the increased risk of relapse after delivery and I'd love to breastfeed if at all possible. Please, do you know of any treatment that could keep me safe without MS attacks during the breastfeeding time? Thanks so much! Answer: Ocrelizumab is a large protein and very little should be detected in breast milk, even shortly after an infusion, as long as you do not receive the ocrelizumab infusion during the first week of breast feeding. The small amount that is found in breast milk will be destroyed by gastric secretions and will not be absorbed by the infant in a biologically active form. This information is based on studies of other large monoclonal protein therapies. To my knowledge no one has measured the amount of Ocrelizumab in breast milk as of this writing. There are anecdotal reports of breastfeeding mothers receiving either Ocrevus or one of the other anti-CD20 monoclonal antibodies with no evidence of harm to the infant. We recommend that patients with MS and their MS specialist assess the risk of relapse post-partum and make a determination of the best time to resume treatment. We hold off on the resumption of treatment until after the mother stops breast feeding, if the mother's disease activity risk factors were low before starting the therapy. If we do hold off on the resumption of disease modifying therapy after the baby is born, we will often pause breastfeeding between 6 and 12 weeks postpartum to repeat imaging studies to reassess the risk of a postpartum relapse before either resuming breastfeeding or ceasing breastfeeding to restart MS treatment. Good luck to you 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. Here is My Question:
Can the MS treatment (medicine) AUBAGIO cause shingles? Answer: Shingles is not a listed risk of treatment with Teriflunomide (Aubagio) for Multiple sclerosis. However, many of the MS DMTs, including Aubagio, can potentially suppress immune responses and increase your risk of unusual infections or reactivation of dormant viruses like varicella, the cause of shingles. This is more common in older patients (> 50), those with prior immunosuppression and those with a lowering of absolute lymphocyte counts on therapy. We encourage our patients to obtain a Shingrix vaccine if they are over the age of 50 and receiving a potentially immunosuppressive therapy. This vaccine is very effective at lowering the risk of shingles. 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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