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Here is My Question:
I have been on Betaferon/ Avonex/ Plegridy for more than 20 years. Does one know whether this medication could still have an effect after this long time? Doctors do not agree about it. I am obviously in the Secondary Progressive stage, and still get the side effects. Shall I stop? Thank you, Answer: Whether or not one should eventually stop a disease modifying therapy (DMT) at some point in their journey with Multiple Sclerosis (MS) is a complex and, at times, emotional decision. Often people face this decision after placing their hopes on DMTs for well over a decade. There is some data to help with these decisions and several larger studies underway to provide even better data. Here is what the data suggests so far:
To summarize:
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. (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 am JCV positive and had my first Stratify test in December 2014 with a value of 2.07 before starting Tysabri. I was on Tysabri for 11 months and my index rose to 2.10 in March 2016. I have since been on Tecfidera and my index again rose to 2.38 in August 2018. My lymph counts have hovered at 4.6 during this time. Just recently I had another Stratify test with an index showing 2.71. Should I discontinue Tecfidera? Answer: We know of no relationship between JCV index levels and risk of developing PML while taking Tecfidera. The main risk factor for the development of PML with Tecfidera is recent use of Tysabri without documenting no evidence of PML prior to beginning Tecfidera and persistently low absolute lymphocyte counts on tecfidera. PML is also more common in people over 60 although still quite rare. 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:
This is the second time that they have considered MS for me. My specialty appointment is not for a month. I am wondering if my temple/eye pain/palsy are normal MS symptoms? Certain kinds of light seem to trigger it. Answer: More often than not, headaches with pain in the temples and the eye, associated with light sensitivity (photophobia) are due to migraines and not MS. While migraine headaches are more common in patients with MS, migraine headaches are a separate disorder and cannot be used in making the diagnosis of MS. The only other headache syndrome that is sometimes associated with MS is called trigeminal neuralgia but what you are describing sounds more consistent with migraines and not trigeminal neuralgia. One thing to keep in mind is that both migraines and MS can causes abnormal results on the MRI of the brain; you need to see a specialist with the expertise to know the difference between the MRI findings in MS versus migraine headaches (typically this is a neurologist who specializes in MS). Benjamin Osborne, MD Associate Professor of Neurology and Ophthalmology Director, Neuromyelitis Optica (NMO) and Neuro-Ophthalmology Clinics Associate Director of the NIH/Georgetown Neurology Residency Program Medstar Georgetown University Hospital Here is My Question:
Do Kegel devises work? Answer: Kegel exercises to strengthen the pelvic floor muscles can help lower urinary tract symptoms related to weak muscles from MS. Presumably, the devices that encourage the kegel exercises could help. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
Is there any risk of being contagious to a young adult on Ocrevus if an older adult in the same home receives the Shingrix vaccine? Answer: No. Shingrix is not a live viral vaccine. You cannot be infected by it. A. Scott Nielsen MD MMSc Neurologist and MS Specialist at Kaiser Permanente Here is My Question:
How long does Avonex stay in the body? Answer: Following a 30 mcg intramuscular injection, peak levels are reached in 15 hours (in some as early as 6 hours) and then decline thereafter with an elimination half life of 19 hours. We typical consider a drug fully eliminated after 5 half lives or, in this case within 4 to 5 days after the injection. However, the biological effects of the drug can persist much longer than the drug itself. Hope that 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 have RRMS and am taking Ocrevus. When seeing my PCP for unrelated issues, she tested my TSH and after T4. My TSH has always been normal but now my free T4 is low. I'm in the medical field and I’m familiar with the thyroid function and pituitary involvement etc. My question is, is this something I should have investigated with thyroid antibody testing etc. or check more info pituitary involvement? If I have some corpus collosum atrophy (according to my MS specialist) would this possibly cause this issue and is there any way to really know the cause? Would levothyroxine be effective if it is caused by a pituitary problem? Can Ocrevus cause this type of issue? Just want to know what to look for when I follow up with my PCP. Answer: Most patients with low free T4 and normal TSH levels actually have normal thyroid function. The low free T4 is simply caused by altered Thyroid hormone binding proteins, which does not effect thyroid function. An endocrinologist can figure this out for you, if necessary.
Two other things to remember about thyroid function tests
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 have a posterior bulging disc, facet atrophy most severe at L4 and L5, and peroneal compression. My toes on one foot have been constantly numb for 6 months and I have constant lower back pain. Are any of these possible indicators of MS or Lou Gehrig's disease as there is a family history of both along with Parkinson’s? Answer We are not able to provide medical opinions on this site for several very good reasons. The purpose of this site is provide information that will help you and your doctor reach an appropriate decision. In that context let me make a few comments about your question First, it appears that you've already undergone an evaluation, hopefully by a neurologist, that led to an MRI scan of your lumbar spine. The question to ask at this point is a simple one: is it possible that the findings on the MRI scan are sufficient to explain both your pain and the unilateral numbness in one foot ? This can only be answered by an experienced neurologist after a detailed history and examination with review of your imaging studies. If the answer is unclear after this evaluation, then the neurologist may need to obtain electrodiagnostic studies (Nerve Conduction studies with EMG) to clarify the underlying issues. Based on the information provided there is no reason for you to be considering MS or Lou Gehrig's disease. It is always best in medicine to take everything one step at a time. Go see a good neurologist and get some answers Good luck Revere (Rip) Kinkel MD Professor of Clinical Neurosciences Director of the Multiple Sclerosis Program Clinical Neurosciences Director University of California San Diego Here is the first physician blog of 2020! Happy New Year! Click on the link below to read the blog.
GILENYA FOR KIDS WITH MS Here is My Question:
I just found out my free T4 is low but TSH is mid-low normal. No thyroid antibodies. Can MS affect the hypothalamic-pituitary axis and cause secondary hypothyroidism? Would this still be treated with synthroid or the like? If I’m also on Trileptal and if it is the cause of the issue, do you still treat the low free T4 if the Trileptal is the only thing that has been effective for my pain? Answer: The labs likely reflect early hypothyroidism. This can be seen in association with MS (whether or not you have the TPO antibodies). However, to our knowledge, it is not a cause and effect relationship. Speaking with your internist/PCP to monitor the thyroid and determine if/when to initiate synthroid is appropriate. Trileptal isn’t associated and I would not factor that into the equation. 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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