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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. A. Scott Neilsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente 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 |
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