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Here is My Question:
Is there any evidence that Tecfidera can lower platelet count? Answer: I have not seen Tecfidera lower platelet counts Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
My daughter is only 16 and has MS. Is pushing her with her homebound school work a good idea? Answer: Multiple Sclerosis is a complicated condition for adolescents and we should be vigilant monitoring for signs of depression or stress, but in general, the stress of school work is a not a dangerous thing. In fact, we recommend children with MS be in school rather than homebound, unless there are independent medical issues that keep a child home. School is about more than facts and knowledge, it is about social interactions and development – which can be challenging with MS, but often engagement is better than homebound schooling. Careful evaluation by a physician and neuropsychologist can help a family decide on the best environment for their student. 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 RRMS 2003 at age 50 (most likely had first attack at 37). I tried Avonex, but discontinued due to side effects. I had difficulty with insurance so hd no treatment for several years with stable brain MRI. Because of severe fatigue I started on Tysabri in 2009 and did extremely well on it (brain MRI stable). Spring 2014 JC indeterm/neg then fall 2014 indeterm/pos. No index done on positive sample, lab couldn't find one (this is my life!). Since I was worried about PML, I stopped Tysabri in Sept 2014 after a total of 52 treatments (spaced them out towards the end). One neuro told me to stay on Tysabri, not to take Tecfidera because it affects CD8 cells and those are the cells that may prevent PML. I was worried about PML so I started Copaxone after a 3 month delay due to insurance and pharmacy issues. Brain MRI stable with one C-spine lesion prior to starting Copaxone. 2015 JC neg/index 0.18. In July this year I started having much worse fatigue, paresthesias, and bladder issues and thought it was due to the relentless heat so I saw my neurologist. Brain MRI unchanged but Cspine shows previous lesion no longer present but two new lesions C4-5 and C7-T1 (two years between Cspine MRI's so don't know when they developed). So Copaxone isn't working. Currently have a JC pending. LFT's very slightly elevated (AST 44, ALT 64). Resting HR 48-50 so don't want cardiac side effects. What would you consider my options for therapy at this point? I have read all of the questions about JC index and Tysabri. One post stated that when restarting Tysabri the risk of PML is low for the first 24 months. Is that true regardless of JC being pos or neg? Is it true about Tecfidera and CD8 cells? What is the risk of PML on Tecfidera? Do you think there will be more cases of PML with Tecfidera as patients are on it for longer periods? Thank you for your help and for providing this site. It has been a wonderful resource! Answer: You have some good questions. Since I know very little about your MS other than your current age (approximately 63) and your disease duration (approximately 25 years), I will assume you have very little disability (you really only mention fatigue, sensory symptoms and “bladder issues”) and disease activity has been low (several new lesions in the spine with most repeat MRIs reported as stable even when not on treatment for long intervals). I suspect you have lots of options. Obviously, you need to discuss these options with your neurologist. These include: 1. Tecfidera; there is a very low if not inconsequential risk of PML as long as you monitor lymphocyte counts and stop the drug with any persistent 2-3 months) lowering below 600 2. Tysabri; your JCV index is low positive and you’ve been off long enough to reset the clock so to speak. Remember that being older and thinner are both additional risk factors for PML and if your disease activity is really low, this is not a great choice for greater than 18 months 3. Aubagio; it is well tolerated, effective and the liver enzyme elevations and hair thinning are definitely over emphasized. I suspect this is one of reasons it is used so widely in Europe and Canada. I generally avoid Gilenya in people of our age. To many potentially silent cardiac issues and there is the risk of shingles. Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Director of Hillcrest Neurology Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I was diagnosed with MS in 2013. I have lesions in all three areas (brain, cervical and thoracic spine). Current deficits include parathesia's, general fatigue and right leg weakness. I have a slight foot drop and limp. I am still able to move all my toes and foot and walk without assistance but my question is why does the foot on my weak leg get red when I am hot and purple when I am cold? There is also slight (non pitting) swelling when I have been on my feet for prolonged periods. I move my foot and leg so it is hard to believe this is some type of venous stasis. The toes on my weak foot are always slightly more pink or purple than those on my unaffected foot. Heat and cold make it much more noticeable. Answer: A potential explanation aside from reduced return of blood from the leg to the heart due to your right leg weakness, would include an autonomic nervous system influence on the leg. The autonomic nervous system helps regulate blood vessels in our body (ie, vasomotor stability or instability). Normally, when it is hot out, your autonomic nervous system will prompt dilation of some blood vessels in the skin as well as stimulate sweat glands to help cool down the body. Spinal cord lesions from multiple sclerosis can affect the autonomic nervous system (particularly if found near the center of the spinal cord), and therefore can alter normal autonomic nervous system function. Your neurologist can weight in on this as a potential explanation for your symptoms. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente |
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