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Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
I have a high white cell count...can I take Tysabri? Answer: A high white blood count (WBC) is often an indication of another underlying problem, such as an infection. It is not a contraindication to start tysabri in a patient with a high WBC, but we usually try to figure out why your WBC is elevated before starting you on treatment. Tysabri treatment will further elevate your white count. While the WBC elevation on Tysabri is harmless and simply a result of the drug’s mechanism of action, the elevation could mask an underlying problem. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
Does anything work as well as Tysabri? Answer: Tysabri is considered one of the three highly active disease modifying therapies for relapsing forms of MS. The other two highly active disease modifying therapies are Ocrelizumab (Ocrevus) and alemtuzumab (lemtrada). Ocrevus is also approved for progressive forms of MS Some people also consider Daclizumab (Zinbryta) one of the highly active MS therapies, but I consider it a class II agent Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
I had breast cancer, had a masectomy and I also have MS RRMS. I had surgery two months ago, and have lived with MS for 8 years. Recently the two drugs that I have tried to suppress estrogen causes me extreme itching. Are the two drugs Tysabri and Letrozole cause an reaction resulting in itching. I asked my neurologist before my infusion he stated he didn't know and told me to take my Tysabri for MS. Answer: Both Tysabri and letrozole can cause itching. Tysabri is used to treat your MS and does not suppress estrogen. Letrozole suppresses estrogen and is used to prevent breast cancer recurrence. I would expect more persistent itching with letrozole often associated with flushing. Tysabri usually only causes itching after infusions and ceases within a few days of the infusion. Hope this helps. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Question:
My husband is 71 and has MS. He has been asleep 14 hours and can't get him up...opens eyes...falls back. It has happened before. What could be happening? Answer: Your husband will require an evaluation by a neurologist to figure out why this is occurring intermittently. There are too many possible reasons and I do not have information in his condition(s) and treatment(s) to help. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
Hi I have posted a lot in the past and finally saw an MS specialist/neurologist. In France i was diagnosed in 2012 as inactive. They classified me as RRMS and told me I had MS since 2002/2003. My first attack was an MS hug. In 2012 I had my second attack of optic neuritis and my diagnosis of MS. What I don't understand is my neurologist told me my progression is a mild course and I had no new lesions in December 2016 and nothing since 2012. How can I have so many symptoms and difficulty in every day house tasks? My symptoms are right leg pain after activity including my right arm and hand. Fatigue, cog fog, concentration problems, spasticity, etc. I had breast cancer, had a masectomy and I also have MS RRMS. I had surgery two months ago, and have lived with MS for 8 years. Recently the two drugs that I have tried to suppress estrogen causes me extreme itching. Are the two drugs Tysabri and Letrozole cause an reaction resulting in itching. I asked my Neurologist before my infusion he stated he didn't know and told me to take my Tysabri for MS. Answer: MS can be quite inactive, at least as far as we are able to determine clinically and by standard imaging, and still cause persistent problems. These problems can be direct or indirect effects of the disease. Direct problems are attributed to chronic demyelination and scaring; These problems can include spasticity, unpleasant sensations, weakness, gait problems, forgetfulness, depression and the list goes on. Indirect problems are usually maladaptive or adverse responses to more direct effects of the disease. These indirect problems can include chronic pain syndromes, depression, anxiety, contractures, infections, medication side effects and the list goes on This is why we always separate disease management and symptom management. Even a person with inactive and relatively benign disease requires symptom management Hope this helps. Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is My Question:
I just found out yesterday that I have seroconverted. My titer level is 2.33. It was 0.08 six months ago, when I was last tested. I found this out at my PCP's office yesterday... still waiting to hear from my neurologist. Thus, I've made an appointment with a new neurologist, but I couldn't get in until after my next infusion is due. Will I be ok to get one more? I know this is sort of an impossible thing to answer. (No prior immunosuppressives except IV steroids and somewhere between 6-7 yrs on Tysabri). Thank you! Answer: If I understand you correctly, you’ve been on Tysabri for 6-7 years and became JCV antibody positive (high titer) in the past 6 months with no other risk factors for PML. If you are asymptomatic (i.e. no new neurological problems to suggest PML), we would typically recommend delaying your next infusion for at least a month and obtain a new MRI of the brain. It is important that the MRI include diffusion weighted images (DWI), since this sequence is useful for the detection of early PML. Remember, PML is rare (approximately 1%) even in people with your circumstances. Your risk of an MS relapse after stopping Tysabri is minimal for the first 3 months, so you have time to figure things out and either remain on tysabri using extended interval dosing (every 8 weeks) with more frequent MRI monitoring (every 4 months) or switch to another DMT. Your PCP should be able to help with these recommendations until you establish care with another neurologist. Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego 200 West Arbor Dr Medical Offices North MC 8687 San Diego, CA 92103 619-543-3500 (phone) Written by Tammy Alvarado, MS Bucket (msbucket.com) US San Diego Health and Health Care Journey hosted an engaging, informative and interactive event for the MS community. The Expo took place on March 18, 2017 at the South Coast Winery and Spa in Temecula, CA that provided a welcoming atmosphere for organizations, exhibitors and attendees. The Expo began at 9:00 am. All attendees were cordially greeted on the patio. Interactive exhibits and a lovely breakfast were provided and made available prior to and after Dr. Kinkel's comprehensive presentation on "Customizing and Integrating Your Approach to MS: One Size Does Not Fit All."
Dr. Kinkel addressed the importance of an accurate diagnosis (over 20% are misdiagnosed with MS). He then touched on how the Gut-Microbiota-Brain Axis affects the central and the enteric nervous system by means of neural, endocrine, immune, and humoral links. He also highlighted the importance of incorporating adaptive equipment to maintain mobility and independence. Dr. Kinkel discussed education and lifestyle adjustments must be done early and maintained:
Following the first presentation we had a brief break where breakfast and snacks were awaiting along with interactive exhibits that showcased the latest innovative products and services with complimentary gifts. Next, Tad Campbell MCN, RDN, LD gave a presentation titled: An Important Talk About Food and MS. “Diet alone will not control MS, but following a diet that focuses on achieving and maintaining a healthy weight, hydration, and reducing inflammation can help improve energy levels and battle fatigue and reduce symptoms like constipation.” CLICK HERE to Read the full summary! Following Mr. Campbell’s presentation, we exited to the patio with beautiful weather. Attendees were able to roam the winery grounds, enjoy a flavorful buffet luncheon, and mingle with presenters, exhibitors and attendees. After lunch, attendees gathered for the final presentation with Livia Walsh. Livia Walsh gave a presentation titled: A Mindful Approach to Living with MS - Managing Symptoms and Stress. Many attendees enjoyed the interactive presentation which demonstrated the use of a breathing technique that promotes stress reduction through mindfulness. The talk concluded with a raffle and several lucky attendees won health related products. Before leaving, attendees were offered dessert and a last chance to visit the interactive exhibits. The Expo was a success with over 150 attendees, 3 speakers and 21 interactive exhibits! The program facilitated a space for attendees to engage and acquire a wealth of useful information in comprehensive western and holistic care. The presentations provided attendee participation and beneficial strategies with clear and realistic information for overall health. The attendees valued the accessibility of the venue, presenters, the culmination of interactive exhibits and the engaging conversation with the MS community. For those of you who missed this event, there will be an upcoming Expo Fall 2017 where more will be offered to the MS community. “If you would like to sign up for a future expo, please do so below and we will contact you when dates have been confirmed” http://www.healthcarejourney.com/expo.html Sponsored By: Premiere Sponsor (Sanofi Genzyme), Partnership Sponsors (Biogen and Novartis), Major Sponsors (Acorda Therapeutics, EMD Serono, and Genentech) Here is My Question:
We will be asked to choose my sons (age 12) next DMD at CHOP. I am looking for advice. Here is some background: first symptom at age 8 (blind in one eye and 20/400 in other). Treated with azythromicine, steroids, vitamin D, PLEX, IVIG. Sight back to normal within two years. Other MS symptoms since have been a limp, tingling in feet hands, side. Started Plegridy in Sept 2017. Metal and emotional changes and an increase of side effects so we are changing treatment. He has a very bad fear of needles IV and injection and this causes him much stress. Doctors don't want him to take oral meds. I want to choose the best one for him and one that if he is going to need to go through the stress of a needle poke he will think it is worth it because he will like see an improvement rather than bad side effects because of the treatment. What are the pros and cons of our choices? Also he had two new brain lesions while on Plegridy. Answer: Choosing a disease modification therapy for children is always complicated. CHOP is excellent at helping families decide. The first thing they will do is ensure they have an accurate diagnosis and then take you and your child’s concerns and specific information into account. They will help you and your family make an informed decision Benjamin M. Greenberg, MD, MHS Vice Chair of Translational Research and Ambulatory Care Department of Neurology and Neurotherapeutics Director, Transverse Myelitis, Neuromyelitis Optica Programs Co-Director, Pediatric CONQUER Program UT Southwestern Medical Center Childrens Health Dallas, Texas Here is My Question:
I was diagnosed with MS at the end of 2015. Currently on Tysabri since 6/2016 because Copaxone did not work. My most recent MRI shows new lesions. I will need to decide between Lemtrada and Ocrevus. Are there benefits of one versus the other? I'm female, 36 years old. lesions in brain, brainstem, and spinal cord. I can still walk, but it takes more effort. From what I've heard, Lemtrada is best early on in the game and better for younger patients. What do you think? Answer: Both therapies are highly effective in MS. Ocrevus (ocrelizumab) is less toxic in my opinion and likely safer (especially if you consider our experience with rituximab). Lemtrada has autoimmunity issues, although the dosing is once annually. Ocrelizumab or off-label use of rituximab would be dosed roughly semiannually and does not have the autoimmunity issues that Lemtrada does. Also, Ocrelizumab (and the phase 2 data of rituximab) suggest a positive effect on primary progressive MS as well. As I don't know your specific case, it is hard to say. I would add that Dr. Kinkel and myself published data on the use of low dose rituximab (100mg) in those who failed other therapies, including tysabri, and we found that it did a very good job of controlling the disease. The reference for that paper is: Mult Scler. 2012 Mar;18(3):377-8. It would be best to discuss with your neurologist those particular issues. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente KP Fontana and Riverside Medical Centers Here is My Question:
I'm 37 yrs old and I had my first MS "attack" in 2001 after the birth of my first child. Then was officially diagnosed in 2004 after my second child. I've had only a few relapses since the start, all following the birth of my children. In 2009 I tried Copaxone with bad side effects, then in 2010 tried Avonex with the same results. Neither lasted more than a month. That was the only time I used any MS treatment. Although I haven't had many relapses, I now have horrible anxiety and mood swings and the fatigue has become unpredictable and debilitating and I'm now on SSDI. I recently got the results of my last MRI and there has been no activity since the MRI I had 4 years ago, and that one was inactive from the year before with one lesion having shrunk. So at least 5 years of inactivity. Great news, just too bad we can't reverse the damage. My question is, how likely is it to remain inactive forever? Answer: Thankfully your disease course appears to be more mild than some; although you are suffering from the typical symptoms (fatigue). The question you are asking is a difficult one to answer in most circumstances because we have limited data on discontinuing therapy. Although your course has been more mild, your age suggests that you are still very much at risk for further inflammatory events, and I have previously blogged on this site about the purpose of the disease modifying therapies in this context (http://www.healthcarejourney.com/physician-blog/a-commonly-asked-question-about-disease-modifying-therapies-for-multiple-sclerosis). I would add that we as MS specialists are interested in learning more about prognostic factors (ie, characteristics about patients who do better coming off DMT versus those who don't) about DMT discontinuation so we can give patients real numbers to the question, "doc, what are the chances if I stop my therapy that I will have another attack (or get worse)". There is some published data from single MS centers, but they tend to recommend considering coming off if you have shown no disease activity (ie, no new attacks/relapses, no worsening of function, and no new changes on the MRI scan) over 5+ years. They also tend to suggest that patients be at least 45 years of age or older to consider this. The age point I think is important because the older we get, the "weaker" the immune system becomes. As the immune system weakens, it is less likely to cause new inflammation in the nervous system (and that is what is targeted by the DMTs). My personal feeling is that 45 years likely is too young to broadly consider coming off DMT as well (in my experience). My colleagues at the University of Colorado are starting a study to help determine some of those prognostic factors, but their criteria for study entry is an age of 55 or older. You can read more about this at https://clinicaltrials.gov/ct2/show/NCT03073603?term=MS+AND+discontinuation&rank=1 Hopefully we will have some good data to share on this subject in the next year or two. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente KP Fontana and Riverside Medical Centers |
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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