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Due to severe worsening of MS, how does one stop taking Gilenya? Answer: You should discuss how to discontinue Gilenya safely with your MS Specialist. The best approach will depend on your particular situation. 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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Here is My Question:
My Evusheld injections are scheduled 2/14 and my next Ocrevus infusion is scheduled 2/17. Is this timing ok? Answer: There is no problem with receiving your Evusheld injection a few days before or after your ocrevus infusion, but it is a good idea to take a few days off between receiving either treatment to make sure any side effects subside before receiving the other treatment. As always, consult with your physician. Revere P (Rip) Kinkel, MD Professor 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:
I developed foot numbness in 2019 and it went into my hands. Although they felt numb, I could still feel everything. I could still feel pain, cold, hot, etc. It’s 2022 and everything has cleared up except my fingertips which still have a dry feeling. I was diagnosed with MS by just MRI findings of brain and cervical. I later reviewed my own MRI of my cervical to find out I have cervical spondylosis, herniated disc and cervical kyphosis. I’m so confused because I thought spinal disorders must be ruled out before diagnosis. Cervical issues can cause the same symptoms and at times affect the brain as well. I also had scoliosis surgery in 2006 ( hardware) and suffer from menstrual migraines. My doctor did not give me a spinal tap because of my hardware but my orthopedic suggested I get one. Otherwise I feel normal and nothing has changed. I’m just wondering if I should get another work up or take the diagnosis? What do you suggest? Answer: Thanks for a wonderful question that gets right at the heart of MS diagnostic criteria. You are correct in your feeling that the rush to diagnosis is often inappropriate. Although I cannot say that about your case without seeing you in person and reviewing your case, I can make some useful comments that may help you. A diagnosis of MS really requires several criteria to be met and that doesn't seem to be the case with you.
I hope this helps you find the answers you need. 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:
Timing for Evusheld, COVID vaccine, Ocrevus... I followed the guidance here for scheduling my COVID vaccination and Ocrevus treaments. The next round are further complicated, I was hoping for further guidance in scheduling my next Ocrevus and my 4th COVID vaccine. Timing info: - Evusheld. Just had the shots. - 3rd covid vaccine. End of August - Ocrevus. Last infusion was mid November. Thanks! Answer: Evusheld (Tixagevimab/cilgavimab) is a combination of two human monoclonal antibodies, tixagevimab and cilgavimab targeted against the surface spike protein of SARS-CoV-2 used to prevent COVID-19. These monoclonal antibodies have been modified to work in a long acting manner and prevent the need for frequent repeat injections. It received emergency use authorization (EUA) on 12/8/2021 to prevent severe COVID19 infections in people unable to mount adequate vaccine responses or unable to receive COVID19 vaccines because of allergic reactions. Evusheld is administered after consent since it has not received full use authorization. This is the same type of authorization initially provided for COVID19 vaccine authorization before full approval was received. Evusheld is not a treatment for COVID19 and must be taken before an infection (i.e. preventative). It is administered by two injections during the same visit. People with MS considered candidates for Evusheld are those on the following treatments; people with a hematopoeitic stem cell transplant in the last year, those on anti-CD20 therapies (Rituximab, Ocrevus, Kesimpta) within the past year, those on chronic steroid treatments, those receiving Mavenclad or lemtrada in the past year and those on cyclophosphamide, azathioprine or mycophenolate. Medical Centers and geographic locations may have different inclusion/exlusion criteria for receiving Evusheld based on availability and priorities, so do not consider this list hard and fast. It is particularly important for people with MS to receive Evusheld if they are receiving one of these therapies and have other risk factors for severe COVID19 infections (age over 50, hypertension, diabetes, vascular disease, lung disease, obesity) Evusheld provides protection against COVID19 infection for up to 6 months. It can be taken any time in your treatment cycles. Plasmapheresis is the only therapy that would diminish the effectiveness of Evushelf and should be avoided if possible after receiving Evusheld. 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:
I have severe asthma and my question is, will this medication (Nucala) interact with my betaseron? Has any other patient tried this combination? If so, side effects? Any studies? Answer: Dupixent (dupilumab) and Nucala (mepolizumab) are monoclonal antibodies blocking the interaction of IL-4/IL-13 and IL-5, respectively, with their receptors. Both are used to treat Th2 mediated inflammatory diseases including atopic dermatitis, asthma and other hyper eosinophilic syndromes. There is, as yet no contraindication for either treatment in people with MS. To oversimplify an issue, there are theoretical concerns that inhibiting overactive Th2 responses with either treatment may activate MS. To date there is only one case report from the University of Rochester suggesting this possibility. That is all the information available currently. Both Dupixent and Nucala are contraindicated in people with parasitic infections and some people with MS treat themselves with parasites (Helminths) to try and treat their disease. It would not be a good idea for these people on parasitic treatment with Helminths to take either Dupixent or Nucala. 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 RRMS and have just been prescribed metronidazole. It says on the leaflet not to take if I have disease of the nervous system. Am I safe to take these? Answer: There is no contraindication to the use of metronidazole (Flagyl) in people with MS. You shouldn't take this while drinking alcohol and should tell your doctor if you've experienced seizures in the past before taking this medication. A very rare side effect of metronidazole, that can occur in anybody, is the development of cerebellar ataxia (walking like a drunk), dysarthria (slurred words) and occasionally confusion. This usually recovers quickly after stopping the drug 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 had 2 rounds of Lemtrada. I responded well after the first round. I have regressed 1 yr after round 2. Loss of strength, foot drop, spasticity. No new lesions shown in recent MRI but limp and discomfort are obvious. We are discussing either a 3rd round of Lemtrada or a different DMD. I have been on Avonex and Tecfidera previously. We had thought Lemtrada would slow my progression but it has not. Contemplating stem cell. Answer: There are many reasons for a lack of response to immunotherapy in MS, but a very common reason is lack of anticipated response. By this, we mean that the individual on therapy is either in a progressive phase of the disease or over the age of 55, an age generally associated with a diminished response to currently available DMTs. HSCT is most effective and currently justified in ambulatory, relapsing MS patients under the age of 45 with evidence of activity (relapse or MRI) in the prior 2 years despite highly active DMTs. 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:
If my MS is stable why has my walking deteriorated? Answer: There are many reasons for people with MS to experience worsening ambulation that are not necessarily related to disease activity. Here are some common examples:
Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Can Kesimpta use cause hair loss? Answer: Kesimpta is not reported to cause hair loss or expected to cause hair loss 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’s the latest on people with B cell depleters (rituxan) and vaccines? I had th J&J shot and then a booster. Do I need a third? Also what’s the MS neurology opinion on Evushield or other monoclonals? Can we access? And if so what’s the timing recommended? Answer: People with MS who are receiving treatment with S1P modulators (Gilenya, Mayzent, Zeposia, Ponvory) and lymphocyte depleting agents (e.g. rituximab, Ocrevus, Kesimpta, Lemtrada and Mavenclad) may have an impaired antibody response to COVID19 vaccination. Whenever possible, vaccination should be completed prior to commencing therapy or after stopping the DMT for a time interval that is dependent of the specific therapy. You should never stop any of these DMTs, even briefly, without first discussing the safety and advisability of doing so with your MS specialist. Decisions regarding the timing of vaccination and altering treatment are highly complex and depend on your MS risk factors as well as your risk of severe COVID19 infection. Per press release, AstraZeneca's Evusheld (tixagevimab co-packaged with cilgavimab) is a long-acting antibody (LAAB) combination with emergency use authorisation (EUA) in the US for the pre-exposure prophylaxis (prevention) of COVID-19. Availability is expected to be limited. The Food and Drug Administration (FDA) granted the EUA for Evusheld for pre-exposure prophylaxis of COVID-19 in adults and adolescents (aged 12 and older who weigh 40kg or more) with moderate to severe immune compromise due to a medical condition or immunosuppressive medications and who may not mount an adequate immune response to COVID-19 vaccination, as well as those individuals for whom COVID-19 vaccination is not recommended. Stay tuned for more information. 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:
Will Kegel exercises improve my bladder incontinence? Answer: Kegel or pelvic floor muscle exercises can help diminish urge incontinence by inhibiting bladder contractions. These exercises are a staple of treatment for those with neurogenic bladders, particularly younger individuals. Additional treatments are often required as well, including timed urination and defecation, eliminating constipation, limiting fluid intake during certain times of day and often the addition of appropriated dosed medications. 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 patients take collagen? Answer: There is no know problem with MS patients taking collagen or amino acid supplements 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:
Are there any Cosmetic laser therapy procedures that should not be used on someone with MS due to their use of heat? Answer: Not that we are aware of at this time. 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 been on fingolimod for 3 years and I know there is a risk of having skin cancer as a side effect. My question is that I am thinking of getting facial hair removal that uses/sprays laser to my face. The question is am l increasing the risk of skin cancer by exposing my skin to laser; also I live in a very sunny place. So exposure to both will or will not cause or contribute to skin cancer, l do not know. What is your advice? Answer: There is no data available that could answer your question. The risk of skin cancers is higher with many of the immunotherapies used for treatment of inflammatory diseases. I have no knowledge of hair removal procedures contributing to this risk in any manner. The risks are very low to begin with and totally eclipsed by the risk of excessive sun exposure. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi, I was diagnosed with MS in 2018. I had a negative spinal tap so it was a long road of ruling out other possibilities. About every 3-4 months I ended up having a hug episode of denial were I have to do a bunch of research and review my MRIs over and over and try to explain away my symptoms. It is excruciating. I finally told my neuro the other day and she is going to test me for MOG as one last rule out. After looking into it, I read that it is mostly associated with optic neuritis and transverse myelitis but I’ve had neither. I do have 2 spinal cord lesions and several periventricular lesions, cortical lesions, and lesions in and around the corpus callosum. No intratentorial lesions or cerebellar lesions. I don’t have mobility issues so I think that’s my biggest thing. I also don’t have the usual relapses or suddenly having to go to the hospital and have never had enhancing lesions. I also have black holes on T1 for pretty much all of my brain lesions. I have some mild atrophy too. I have cognitive issues causing me to be on disability and a terrible MS hug pain unless I take trileptal. I have mild nystagmus and a significant tremor. I also have some occasional incontinence. Very bad cold intolerance. And other things. My MS specialist says mine is mold and definitely not primary progressive. Anyway, what would the differentials for those findings be? Are black holes associated with other neurological issues? Are black holes and white matter lesions like this ever a normal finding? Have you ever seen people not have usual relapses but just have accumulating slow progression in symptoms and no walking issues? Have you ever had an MS patient never have enhancing lesions or optic neuritis? I’m just looking for differentials to consider if any to discuss with my doctor and wondering if these are ever “normal” to see on an MRI. P.S. I’m a Nurse Practitioner Answer: You raise some very good questions about MS diagnostic criteria. Let me touch on a couple of points and show you where many physicians make mistakes in the interpretation of diagnostic data.
I hope this information helps. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Hi, so, there have been reports of Selma Blair having had a stem cell transplant and she is in remission. Is this something that could assist other Multiple Sclerosis patients? And where would one start to seek out information on this option. Answer: Selma Blair underwent a procedure called an autologous hematopoietic stem cell transplant at Northwestern university using a protocol similar to the protocol we use at UCSD. It is a procedure with more short- and long-term risks and side effects than currently approved high efficacy disease modifying therapies. To be a candidate one must meet the following criteria
Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Can I treat Bacterial Vaginitis with Metrinidazole 400mg tablets when I have MS? Answer: There is no MS related contraindication to the use of metronidazole for bacterial vaginitis. This is a prescription antibiotic. Hope you feel better. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have black holes on my MRI with stem lesions. Will my vertigo and bathroom issues go away with Ocrevus? Answer: Whether your "vertigo and bathroom issues" have the potential to remit (i.e. go away) has more to do with the exact cause and duration of the symptoms. Both vertigo and impaired urination require evaluations for causation in most MS patients, particularly those over 40, since other conditions can cause similar symptoms. If determined to be related to MS, it is rare for these symptoms to go away spontaneously once the symptoms have been present continuously for over a year. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Is it protocol to change a patient's medication based on new symptoms without ordering a new MRI?10/31/2021 Here is My Question:
Is it protocol to change a patient's medication based on new symptoms without ordering a new MRI? Answer: It is certainly appropriate to change DMTs without a repeat MRI, if there are meaningful alterations in symptoms, usually accompanied by changes on examination, that indicate significant disease activity. It is my opinion that a repeat MRI scan should be obtained in all relapsing remitting MS people with MS at least 3 months after starting the new treatment to establish a new baseline for monitoring the response to the new treatment. Repeat MRI scans are less useful in people with primary or secondary progressive MS unless there is a specific reason to be concerned that you may have recurrent or new inflammatory disease activity or another condition affecting the nervous system. The timing of repeat MRI scans is the subject of much debate and variance around the united states and elsewhere. I would recommend that you discuss your physician's reason for his or her decision. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences 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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