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Here is My Question:
This September will be my 46th infusion of Tysabri. In October 2013 I continued to test negative for JCV. In March 2014 I tested positive, with a titer of .33. With every subsequent infusion we have tested for JCV. The titers have ranged from .27 to .43. Now for my question...for my latest infusion (August 20th) my test came back negative. How can that be? Lab error? All tests have been done through Quest with a 92675 code. I am seriously considering coming off Tysabri and starting Rituxan in October. I have done incredibly well on Tysabri and really hate to come off it, though I do have concerns. What are your thoughts? Can you offer an explanation? Thank you so much for your time. This is a wonderful service you provide. Answer: Your experience is very common and illustrates some important points. The bottom line is that I see little reason to stop Tysabri if you have done well. Here is why I say this:
Remember, all test results exhibit normal biologic variation (that due to natural changes in your body of no significance) and normal testing variation (that due to the normal variability of the actual test even if run on the same blood sample). You need to keep this in mind when interpreting results. Rip Kinkel, MD PLEASE NOTE: The information/opinions on this site should be used as an information resource 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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Here is My Question: How is vitamin D deficiency different from MS and what is the chance of being diagnosed with MS when the actual cause is vitamin D deficiency? Answer: The main difference between MS and vitamin D deficiency is that MS is defined as recurrent inflammation in the central nervous system while vitamin D deficiency is simply defined as a low blood level of circulating vitamin D. In isolation, vitamin D deficiency is not MS. Current knowledge, however, suggests that vitamin D deficiency may influence inflammatory disease already present in an individual (MS being one of many such conditions). MS is considered a complex trait—meaning that various environmental and genetic factors play a role in who is susceptible to developing the disease. Vitamin D, interestingly, may play a role in both environmental AND genetic susceptibility to MS. The environmental component would be where you live (ie, what latitude influences time of exposure to sunlight), how much sun exposure you get (as our skin produces active vitamin D from exposure to sunlight), and the amount of vitamin D you consume in your diet (including supplementation with vitamin D3 or cholecalciferol). The genetic component is beginning to become more apparent through research efforts. Based on our current knowledge on this topic, the relationship between vitamin D and MS is one of association and has not been proven to be one of causation (ie, vitamin D deficiency does not cause MS by itself). We have observed that patients with MS who are vitamin D deficient on average have more active MS—defined as more MRI lesion activity and a greater frequency of MS relapses—compared with MS patients who have normal vitamin D levels. The fact that there are vitamin D receptors on lymphocytes (white blood cells) and their function appears to be in influencing how inflammatory the immune system is, further strengthens the argument that vitamin D status and MS disease activity are related. Currently, interventional clinical trials (comparing high and low dose vitamin D) are underway to determine if low vitamin D levels and MS disease activity is really a “cause and effect” relationship. The diagnosis of MS requires that other mimicking diseases of MS are reasonably excluded or ruled out. Vitamin D deficiency is not one of these mimickers. The question of vitamin D deficiency is if we should be repleting patients with MS with the hope that doing so will reduce the number of new or enhancing brain and spinal cord lesions and clinical relapses in the future. Supplementation should be discussed with your physician. I would also caution readers that supplementing with vitamin D should not replace treatment with an FDA approved MS therapy. The current scientific evidence does not support such an approach. -ASN PLEASE NOTE: The information/opinions on this site should be used as an information resource 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:
Trying to decide on new medicine to take. Right now I believe I have narrowed it down to Tecfidera or Tysabri. My JCV came back as 0.23 positive. I am told that is considered on the low side. I used to take Avonex for about 3-4 years, but stopped about 18 months ago. My history is this: I have had about 2 relapses in 9 years since the original 'pain' after knee surgery in 2005 - pain on right side of face/head, left leg, some other 'minor' things possibly. I understand Tecfidera to be about 50% effective, and Tysabri to be 98% effective. My concern is how long you can you be on Tysabri? I looked at Dr. Kinkle's flowchart (SEE FLOWCHART), and it looks like people on Tysabri for 4+ years have much greater risk of developing PML. It was my understanding that a lot of people in my position, early diagnoses with good mobility etc., are starting to take Tysabri where as a few years ago it wasn't considered unless it was an extreme case. I am confused as to how to go about my decision on which is best for me in my current situation? Answer: You are asking the correct questions and beginning to think through this decision rationally, so let me give you a little help. While I still do not have enough information to provide the individual advice you are looking for, I can help refine the answers to some of the points you raise:
I hope this helps. -Rip Kinkel, MD Here is My Question:
Can a persistent cough, especially at night, be a symptom of MS, and if so is there anything that can be done to treat it? Answer: Lesions in/near the area postrema (the area where the brainstem and spinal cord meet) can cause nausea, hiccups, and cough. Such a symptom is unusual in MS and more common in rarer neurologic disease that can mimick MS. When this part of the nervous system is affected, it can cause intractable symptoms throughout the day as well. More common explanations for persistent coughing include certain medications (called ACE inhibitors), seasonal allergies, post-nasal drip, acid reflux disease, asthma, etc. The cause of your symptom can't be diagnosed over a blog (requires a clinic evaluation and examination). I would suggest speaking with your PCP first. Treatment varies depending on the identified cause of your cough. -ASN, MD This answer is for the person who sent in the question about the chest pain they are experiencing...
Anyone with chest pain radiating to the neck and left arm should seek medical attention, especially if there is any shortness of breath. Not sure if this is what you are describing but without knowing you and the details of your case, you should be contacting your doctor ASAP. In fact your prescribing doctor should ALWAYS be the first person you contact with a new symptom that you think could be a side effect. As I said in a previous response to a similar question, a doctor like myself can not evaluate symptoms in isolation. By this I mean that is impossible to answer a question like this without knowing a lot more about you and your health condition. Please call your doctor as soon as possible. Rip Kinkel, MD PLEASE NOTE: The information/opinions on this site should be used as an information resource 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. Question:
Is it possible that my MS is causing instant hot flashes when I am upset or stressed? For example, if a particularly annoying person calls, as soon as I see their number displayed a hot flash sets in. Answer: My initial impression of the connection between MS and an immediate hot flash is dubious. MS symptoms tend not to come on suddenly but have a more gradual onset and also tend to be asymmetric (i.e., not a mirror image on both sides of the body which is usually the case in hot flashes). I think it is more likely a stress reaction independent of MS. With that said, medications such as gabapentin that is used for MS-related sensory disturbances can help hot flash symptoms as well if their severity warrants a medication trial. This is something you can bring up with your doctor. Other option, of course, is to block all annoying callers if feasible. :) -ASN It is not possible to interpret potential adverse effects of a treatment in isolation; you must contact your doctor and get evaluated to determine if the breast pain is at all related to any drug. Asking other patients if they’ve experienced similar symptoms will not resolve your question. Hope the pain goes away soon.
Rip Kinkel, MD Here is My Question:
Is it possible to hit a nerve? I have been taking Avonex for 10 years and never had an issue, but last week I had a sudden burning pain in my leg to my knee after the injection in my thigh. Did I hit a nerve? Will it get better? Answer: It is certainly possible to irritate a sensory nerve with an intramuscular injection in the region of anterior lateral thigh. One reason this location is used is to avoid injury to motor nerves (those that make muscles move) but there are sensory nerve branches in this area. If this burning pain does not subside within 3-4 days, you should contact your neurologist for instructions. Good luck Rip Kinkel Here is My Question:
I have been taking Copaxone for relapsing remitting MS for over a year. I just had to have outpatient surgery on my toes for ingrown toenails. It has been over a week and the toes have shown a daily digression as to healing. I have continued seeing my specialist and he is guessing I am having a reaction to the chemical they put on the nail matrix, but I'm not really sure. I'm on an antibiotic and have no infection. My toes ARE bright red down to bend of toe with some swelling and continued drainage. I am wondering if Copaxone is known to cause a delay in healing associated with surgery? I did not have general anesthesia, rather it was topical. The doctor says we just have to stay on the antibiotics and wait it out. Answer: Theoretically, any immunomodulator could alter the healing process. While I can’t exclude the possibility that Copaxone may be impairing wound healing, I think it is less likely. Patients on the injectable disease modifying therapies tend to continue their medication throughout the pre- and post-operative course without difficulty or deviation from normal recovery. As your surgeon pointed out, you may have a reaction to another drug used in the procedure. I would suggest speaking with your MS treating physician about the appropriateness of Copaxone during your recovery period. Clarity on the ‘cause and effect’ in your case may come with time and careful observation. —ASN PLEASE NOTE: The information/opinions on this site should be used as an information resource 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 just asked a question about Rituximab after Tysabri. Relatedly, how do you dose the Rituximab and how long do you treat for. Also do you check CD19 CD20 levels to monitor? If so what are your targets? THANKS again--Neuro Pharmacist Answer: This is an extremely important question that must be answered by future clinical trials. The phase II rituximab trial in MS dosed patients with a single dual induction only (1000 mg X 2 doses separated by 2 weeks) with no re-treatment. There was no link between the return of CD19 positive B cells and the return of disease activity. In contrast the return of disease activity in other immunoglobulin mediated autoimmune disorders, such as neuromyelitis optica, appear to be linked to the re-emergence of CD19 + B Cells, particularly the CD27+ subset. This leaves us with a significant predicament in typical relapsing MS; we do not know the minimally effective dose or an effective biomarker for treatment response or the need for re-treatment; we also can not use the “treat to target” approach advocated in rheumatoid arthritis patients since disease re-emergence is more abrupt and potentially more devastating in MS. Annette Langer Gould and I collaborated on a uncontrolled observational study in active relapsing MS patients receiving low doses of rituximab (100 mg in a single infusion) and demonstrated that even these doses were able to deplete CD19+ B cells for up to 3 months. Most of these patients remained stable on repeated infusions of the 100 mg dose every 4 to 6 months, markedly decreasing the total cumulative dose of rituximab. For the time being, I use rituximab primarily as induction therapy in highly active, high risk MS patients before initiation of other standard disease modifying therapies. For NMO, I re dose patients with any reemergence of CD19 B cells. Hope this helps. Rip Kinkel PLEASE NOTE: The information/opinions on this site should be used as an information resource 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. Question: Are there any websites to find Accessible/Universal Design homes for sale? All the many usual websites aren't set up for that kind of search. or there are just a few on barrierfreehome.com, I know there must be more out there, I hope? Answer: Sorry it has taken us a while to answer this one. The reason is that we have been researching and checking around in regard to your question. Unfortunately, while there have been several attempts to create a national clearing house for accessible (not UD) homes as well as some local/state efforts, apparently none have survived (other than barrierfreehome.com which you already found). We did find organizations like Better Living Design (BLD) http://betterlivingdesign.org/ that are working on home designs for increased accessibility. We found this website that has a listing of web resources for universal design http://www.icgov.org/?id=1169 The NMSS has this resource on housing (which has barrierfreehome.com) READ MORE And your question was about homes for sale, so this isn't directly relevant, but we thought we would mention that the MSAA owns and operates five barrier-free apartment complexes which provide accessible, affordable housing for physically disabled adults in an independent living environment. READ MORE We checked with our mobility experts and they know of individual contractors that make homes more accessible, but were not aware of any websites listing accessible/universal design homes for sale. If anyone reading this knows of a good website for this or has a good resource, please post it in the comments section below. Here is My Question:
What can I expect after a steroid drip treatment? Answer: Immediately after high dose steroid infusions (usually 1000 mg) you will notice little difference. Some people develop headaches during the infusion which may improve if the rate of the infusion is decreased. Most people develop a metallic taste in the mouth during infusions that goes away quickly. We used to recommend that people suck on sour lollipops during infusions to lessen this taste. Very rarely people develop hiccups during steroid infusions that require a separate treatment if they do not disappear promptly. The vast majority of people have no problems with their infusions and may return to whatever activities they planned for the day. As I have written about previously, it is common for steroid infusion to cause insomnia and some mild changes in behavior (feeling like you have more energy and hyperactive, slightly anxious, possibly tremulous) and rarely steroid infusions can cause a more significant and typically brief period depression, manic behavior or psychosis. Responses to steroids vary significantly from patient to patient; for most patients with early MS receiving steroid for relapses, you will begin to notice some improvement by day 3 to 5, if not sooner, with significant improvement in the first 2 weeks after steroids. Most improvement from relapses occurs in the first 1 to 3 months after steroids with more gradual improvement thereafter. Patient with more advanced MS receiving steroids for more gradual worsening often report a transient improvement in symptoms and function that often disappears within 2 to 6 weeks. Rip Kinkel We have had a question about Difen Flex before. We also checked with another of our experts (in addition to Dr. Kinkel), but they had the same response (see link below).
http://www.healthcarejourney.com/q--a-for-virtual-ms-center/can-i-take-difen-flex-if-i-have-multiple-sclerosis Deborah Backus, PT, PhD is Director of Multiple Sclerosis Research at the Shepherd Center in Atlanta, Georgia. Dr. Debbie received her B.S. in Physical Therapy in 1986, and her Ph.D. in neuroscience in 2004. She has combined her experiences as a physical therapist, researcher and educator to focus on improving functional and health outcomes for people with neurological injury or disease, specifically related to people with multiple sclerosis (MS) and spinal cord injury (SCI). As part of the Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center, she is focusing on the assessment of the health and wellness needs for people at varying stages of MS, and the evaluation of rehabilitation and exercise interventions that may be beneficial to people with MS. Her clinical experience combined with her research interests has fueled a passion for facilitating the translation of evidence into clinical practice, including influencing clinicians in practice, payers for reimbursement of evidence based interventions, and policy makers related to health policy. Dr. Debbie has presented both nationally and internationally, and has also published related to this work. We have received comments from many of you about research studies sometimes being difficult to understand/decipher, and that you want more information about clinical trials and how to join. This month, Deborah will be starting "Ask Dr. Debbie" for HealthCare Journey. She will be providing information about research and also answering questions you might have about research. Please welcome Dr. Debbie to the site and look for the launch of "Ask Dr. Debbie" this month! Lilyana Amezcua, MD is a board certified neurologist and multiple sclerosis specialist. She joined the USC Department of Neurology as a resident physician in 2003, after having completed her medical degree at Jefferson Medical College and an internal medicine internship at Hahnemann Hospital of Drexel University. She completed a residency in Neurology at USC and served as Chief Resident. In 2006, she received support from the National Multiple Sclerosis Society (NMSS) as a Clinical MS Fellow to develop her expertise in the study and treatment of MS. She was appointed as Assistant Professor of Clinical Neurology in 2008 and Medical Director of the MS Comprehensive Care Center in 2011. The primary focus of Dr. Amezcua’s research involves defining genetic and ethnic contributions in MS, with an emphasis on defining differences in disease expression and progression in individuals of Hispanic descent. Her studies are designed to identify high-risk subgroups of patients who may be at risk for disease progression and could benefit from earlier, aggressive treatments, such as those with opticospinal forms of MS that are more commonly observed in individuals of Asian ancestry. In addition, she plans to address the influence of migration, environmental factors, such as Vitamin D, and genetic factors on responses to treatment MS in this population. Recently, Dr. Amezcua has expanded her studies to include genome-wide association studies (GWAS) to identify the association of ancestral genes that are differently distributed in human populations with clinical and radiological manifestations of MS and response to treatment. Dr. Amezcua is a recipient of the Nancy Davis Junior Investigator Award and an NIH KL2 award through the USC Clinical and Translational Sciences Institute (CTSI). She serves on multiple local and national committee's of the NMSS: the Clinical Advisory Committee for the California and Nevada Chapter of the NMSS, is a council member of the NMSS Hispanic MS Advisory Board and was recently elected to serve in the Access to Care Task Force of the NMSS. She is also working together with the NMSS to develop and bring MS services to the newly opened Wellness Center of the historic Los Angeles County Hospital. We are very excited that Dr. Amezcua will be sharing her expertise with us! We want to provide feedback to our supporters on this website. Genzyme is providing us with their MS glossary http://www.msonetoone.com/multiple-sclerosis-glossary. Please let us know what you think of it so we can provide valuable feedback! You might already know a lot about MS and terminology for it, but think about people who are newly diagnosed, or family members. How helpful do you think this is as a learning/teaching tool? Below is a link to the glossary as well as a very short survey. Help us help you!
https://www.surveymonkey.com/s/MSglossary We are excited that Benjamin Greenberg, MD is joining our HealthCare Journey team to help people with MS! Dr. Greenberg received his Bachelor of Arts degree from Johns Hopkins University and his Masters Degree in Molecular Microbiology and Immunology from the Johns Hopkins School of Public Health in Baltimore, Maryland. He attended medical school at Baylor College of Medicine in Houston, Texas. Then, he completed an internship in medicine at Rush Presbyterian-St. Lukes Medical Center in Chicago, Illinois before going on to his residency in neurology at The Johns Hopkins Hospital in Baltimore, MD. He then joined the faculty within the division of neuroimmunology at Hopkins and became the co-director of the Transverse Myelitis Center and director of the Encephalitis Center. In January of 2009 he was recruited to the faculty at the University of Texas Southwestern Medical Center where he was named Deputy Director of the Multiple Sclerosis Program and Director of the new Transverse Myelitis and Neuromyelitis Optica Program. That same year he established the Pediatric Demyelianting Disease Program at Children’s Medical Center Dallas. Dr. Greenberg is recognized internationally as an expert in rare autoimmune disorders of the central nervous system (e.g. transverse myelitis, neuromyelitis optica, ADEM and autoimmune encephalitis). He splits his clinical time between seeing both adult and pediatric patients. He routinely consults on the inpatient units of University Hospital, Zale Lipshy, Parkland and Children’s. His research interests are in both the diagnosis and treatment of transverse myelitis, neuromyelitis optica, encephalitis, multiples sclerosis and infections of the nervous system. He is actively involved in developing better ways to diagnose and prognosticate for patients with these disorders. He has led an effort to improve biorepository development and has created uniform protocols for sample handling and analysis. As part of this initiative his research has identified novel biomarkers that may be able to distinguish between patients with various neurologic disorders. He also coordinates trials that study new treatments to prevent neurologic damage and restore function to those who have already been affected. He currently serves as the Director of the Neurosciences Clinical Research Center and is a Cain Denius Foundation Scholar. We welcome Dr. Greenberg and look forward to him sharing his vast experience and knowledge about MS. Here is My Question:
I have RRMS. I don't want to take medications. What's the biggest risk? Answer: Since this is a question many people with multiple sclerosis ask, we have dedicated a physician blog about it. CLICK HERE FOR THE ANSWER. |
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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