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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
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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 Here is My Question:
Since starting Ocrevus, I find I don’t heal from even the most basic/superficial cut or scrape. Now, I am booked for a full abdominal surgery (complete hysterectomy, including ovaries and tubes) in a few weeks. Wondering how I will ever heal from this, if cuts/scrapes don’t heal well at all? My last Ocrevus infusion was Sept 29th, and my surgery is Nov 22nd. Thank you. Answer: It is certainly possible that Ocrelizumab or related anti-CD20 monoclonal antibody therapies could impair normal wound healing. Although there is no literature to support this hypothesis, there are also few if any studies in humans that have looked at this specific relationship. I assume you do not have other conditions (e.g. Diabetes) that can delay wound healing. Waiting 2 months for the surgery seems prudent given the information available; it is even better if you can wait 3 months for complete clearance of the ocrelizumab from your system. It is more important to avoid any corticosteroids because of the well demonstrated effect of steroids on the delayed healing of wounds. 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. Here is My Question:
I have small fiber neuropathy and have problems dropping things and balancing. My doctor just looks at me like I'm crazy when I tell her this. I work as a correctional officers and it is getting worst. I'm a liability. What to do about this? Answer: Small fiber neuropathy is not a symptom of Multiple Sclerosis. Talk to you neurologist about your ongoing symptoms with this problem. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I drink everyday. How long should I wait to take Tecfidera? I am just starting medication today. Tecfidera is a gastric (stomach) irritant, and this effect could be enhanced by alcohol intake. Tecfidera can also damage the liver (usually mild and temporary), which could also be enhanced with daily drinking. Answer: I would advise no more than moderate drinking (1 drink daily for women and 2 drinks daily for men) and no more than 5 days per week (try to abstain at least 2 days out of the week). Avoid alcohol for about 2 hours after a dose of Tecfidera. Either stop drinking or stop Tecfidera if any significant elevations in Liver enzymes occur on treatment or if you experience significant gastrointestinal side effects and contact your doctor for further instructions. Obviously, you should avoid drinking altogether if you plan to drive, are pregnant or have a history of alcohol use disorder. You should also avoid drinking if you have other medical conditions or take other medications contraindicated by the use of alcohol. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My husband and I are looking into egg freezing/ embryo banking. I know that I need to wait 6-12 months after receiving an OCREVUS (ocrelizumab) infusion to become pregnant, but does OCREVUS (ocrelizumab) affect my eggs? If so, how long after an infusion should I wait to harvest my eggs? Answer: There is no evidence that oocytes express CD20, the target of ocrelizumab and other B cell depleting agents. This means that Ocrelizumab should not have any effect on harvested oocyte (i.e. egg) cryopreservation. The medications sometimes used to produce ovulation or maturation of oocytes, particularly Gonadotropin releasing hormone agonists, may increase the risk of MS relapse in the 3 months following an ovulation cycle. This is postulated to be caused by ovarian hyperstimulation. In this case your B cell depleting therapy may protect you from post ovarian stimulation relapses. 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. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I read all your answers about Ocrevus and Covid vaccine timing, but don't really understand! If I get the Covid booster, how long should I wait to get the Ocrevus? My last Ocrevus was nine months ago. Answer: If you are already receiving treatment with Ocrevus, it can be difficult to time vaccinations. Different individuals have different risks for COVID19 infection, and this risk should be considered when trying to decide on the timing of a primary vaccine or booster. Whenever possible we recommend waiting at least 3 months after your last Ocrevus infusion to receive either a primary vaccination or a booster. We then recommend waiting at least 2 weeks after your second primary vaccination (Moderna or Pfizer vaccines) or at least 2 weeks after your booster vaccine to receive any further Ocrevus infusions. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How often should a person with MS get an MRI? Answer; It depends on various factors: past (recent) history, age, what therapeutic you are on, how long you’ve been on the therapy, etc. on average it may be every 1-2 years during treatment once stabilized. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente |
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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