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Here is My Question:
I have been on Avonex for almost 11 years and was doing very well until about 2 years ago when accumulated disability seemed to accelerate rapidly. Can menopause and decrease in estrogen levels affect this rapid change? I am not clear on what causes accelerated accumulated disability especially when I have been so committed to exercise, drug compliance and general spiritual/physical well-being. Answer: Menopause is defined as the cessation of ovarian follicular activity and a concomitant decline in ovarian estrogen (i.e. estradiol) production. Many of the common symptoms of menopause are caused directly or indirectly by this decline in estrogen production; these symptoms include hot flashes, night sweats, heat sensitivity, sleep disruption, mood alterations, atrophic vaginitis with loss of lubrication, pain with intercourse and loss of sexual urges, cognitive problems, bladder irritability, enhanced responses to painful stimuli, headaches and osteoporosis. If these symptoms sound similar to what many woman with MS experience well before the onset of menopause, you can understand how menopause may compound and worsen the experience of MS as reported by women. What is not known is whether menopause objectively alters the course of MS; the few studies that have been reported suggest no differential sex effect (Male vs female) of aging on MS disease course, whereas one would expect an acceleration of the disease in women over the age of 50 if menopause caused the disease to worsen. There is some preliminary evidence that menopause may accelerate normal aging processes in even healthy women and this could further diminish the cognitive and neuronal reserves of women with MS. The real question is what if anything can be done about the effects of menopause in women with MS. While hormone replacement therapy (HRT) reverses or minimizes many of the symptoms of menopause, this approach to treatment has been a controversial topic for years because of the potential risks of HRT in the general population. However, it is quite possible that the risk:benefit ratio of HRT may be lower (better) in women with MS compared with the general population. This is particularly true when one considers the beneficial effects of HRT on general quality of life, something that is often in short supply when longstanding MS patients are at the age of entering menopause. HRT is currently recommended in women age 50-59 within 10 years of onset of menopause without a history of breast cancer (2012 recommendations from the North American Menopause Society). When used in this age group, HRT does not increase the risk of coronary heart disease and may even reduce the risk of vascular disease. The use of estrogen mono therapy in women with an intact uterus increases the risk of uterine cancer; to avoid this risk HRT usually involves a combination of estrogen and progesterone. If you're interested in considering this treatment, you should discuss this further with your MS specialist and primary care doctor. If they agree that your risk factors for HRT are not excessive and your MS symptoms are worse as a result of menopause, then this is a reasonable approach to treatment. 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. Here is My Question:
I can't stop smoking. It is Thanksgiving and I will once again have my family on my case for smoking. I know smoking is bad for everything but why is it so bad for people with MS? Answer: You are correct on all fronts; smoking is bad for MS and, like all addictions, it is hard to quit. You’ve asked the most difficult question which is, how is cigarette smoking bad for MS? Although we do not have a full answer to this question, we do have some interesting information:
The most important thing to remember is that the evidence linking the prevalence and severity of MS to cigarette smoking is overwhelming. My strong suggestion is to use a nicotine substitute (patch or gum only) for smoking cessation and get involved with the Freedom from Smoking program offered through the American Lung Association. This online resource is readily available to you once you decide it is time to quit. Good Luck -Rip Kinkel MD Here is My Question: I stopped Tysabri last December and started taking another drug about 8 weeks later. I seem to have suffered a 'downward spiral' since stopping Tysabri. Did I miss a middle step like steroids in the middle time? Answer: I am so sorry to hear about your problems since stopping Tysabri; there could be several reasons why you worsened after stopping the Tysabri:
Although I do not know the details of your case, you may want to have a discussion with your MS specialist about restarting Tysabri. I assume you stopped taking Tysabri because you are JC virus antibody positive; if this is true, you could restart Tysabri monthly for the first 3 to 6 months and then switch to infusions every 8 weeks. There is mounting evidence that this regimen (every 8 week infusions) reduces the risk of PML while remaining very effective. Unless you are experiencing problems related to your current drug, I see no reason for an accelerated elimination of this drug; just stop taking it and simultaneously restart Tysabri if your MS specialist agrees. Once you are back on Tysabri, you will need repeat MRIs every 6 months for the first year and then every 4 months. We use a non contrast protocol that takes only 5 to 7 minutes for scanning; this includes diffusion weighted images and a FLAIR T2 sequence. This reduces your exposure to gadolinium contrast, reduces the scanning time and reduces the cost of the MRI. If anything looks suspicious for PML, we hold the Tysabri and bring you back for another full MRI with contrast within a month. I’ve attached a poster from last years ECTRIMS meeting showing the efficacy of extending the Tysabri dosing interval. Rip Kinkel MD Director of the University of California San Diego MS Center 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 read that Plegridy contains anti-freeze, which is what makes it long lasting compared to Avonex? Wouldn't it be safer to just inject more often and use Avonex? Answer: The generic name for Plegridy is PEGylated interferon beta 1a. PEG stands for polyethylene glycol, not to be confused with ethylene glycol or anti-freeze. While ethylene glycol (anti-freeze) has been in much demand in many parts of the country this week, especially poor Buffalo my home town, polyethylene glycol or PEG is used widely in medicinals, cosmetics and other industries because of its chemical properties and well known safety profile. In medicine PEG is well known as a laxative and is the basis of drugs like GoLYTELY and MiraLAX. When attached to proteins like interferon, the active protein is released and cleared more slowly allowing for slower rise in activity and a longer duration of action; this allows the protein to be injected less frequently and potentially with fewer side effects. Plegridy is not even the first Pegylated interferon product; PEGylated interferon alpha-2b was approved in 2001 (PEGylated interferon alpha-2a was approved in 2002) for the treatment of chronic active hepatitis C and is one of the main treatments for that disease. Rip Kinkel MD UCSD MS Center Here is a blog that will answer your question READ MORE
And here are some common diets for people with MS: Here is My Question:
Have you heard of any correlation of having teeth either pulled or a root canal leading to the development of chronic illnesses, including MS? The article I was referred to suggests that the many infectious organisms that would lead to the need for a root canal or tooth extraction remain in the body after the procedures. Since there is no tooth or nerve vessels for the bacteria to go to, they hibernate in the body and eventually spread to other parts of the body in a much stronger form. The article claims that many chronic diseases can occur this way, including MS and other neurological diseases. READ ARTICLE Answer: Thank you for providing this web link on root canals. Frankly, I found it hard to sink my teeth into their logic. Chronic dental and gingival infections are common and have been linked to the worsening of many disease states including MS. Root canals do not solve the underlying problem, but it is doubtful that they either cause or worsen other disease states. Dental disease and gingivitis usually requires other more aggressive treatments in addition to procedures like root canals. In many cases it is simply best to extract the tooth. If your teeth and gums are in bad shape and you have MS, it is important for you to establish an aggressive treatment plan with your dentist and orthodontist. First and foremost, you need to stop smoking as this is the number one cause of chronic dental and gingival problems in adults. Rip Kinkel MD UCSD MS Center Here is My Question:
Is there an opinion on using Solu-Medrol IV Drip versus Acthar Gel during a relapse? Assuming Solu-Medrol is typically administered for 3-5 days during a relapse, would it ever be recommended to take a monthly or bi-monthly dose to help slow down frequent issues or relapses? Answer: Solu-Medrol is a synthetic corticosteroid that is similar to cortisol, while Acthar gel is essentially adrenocorticotropic hormone (ACTH) which stimulates an individual's adrenal glands to produce cortisol and other steroids. Both have been effective in treating moderate to severe MS relapses. General consensus seems to favor Solu-Medrol, although Acthar gel may be used in individuals who haven't responded to or have experienced too many side effects to Solu-Medrol. Acthar gel is administered as an injection into the muscle, so for individuals who have very difficult veins, this is an alternative option. Use of Solu-Medrol may provide biological benefit out to 6 months, however, clinical trial data have consistently demonstrated that synthetic steroid does not alter the ultimate course of MS. Rather, steroids can speed up recovery from a relapse. Pulsed steroids (monthy, bimonthly, quarterly, etc.) have been combined with disease modifying therapies (ie, interferon beta-1a) but showed no advantage to adding this to DMT. The overarching principle to take away is that steroids do not actually alter the disease course of MS (however, the disease modifying therapies do), have significant side effects if taken chronically, and have a place in MS treatment for moderate to severe MS relapses. A. Scott Nielsen MD Virginia Mason MS Center Here is My Question:
I was diagnosed officially in Oct 2013, was symptomatic and followed for 15 years prior to diagnosis. JVC positive. I started on Tecfidera Nov 2014 and stopped Oct 20, 2014 based on trend of 2014 lab values --- dates done: 1/7, 3/21, 9/19, 10/9 and 11/11. absolute CD3 1347 1512. 587. 418. 506 absolute CD4. 755. 929. 405 294. 337 absolute CD.8. 588. 602. 166. 121 151 absolute CD1. 74. 96. 73. 62. 92 absolute lymph 1820 1774. 785. 598. 754 % CD3, CD4 and CD8 all within normal limits but all declined and continued decline after Tecfidera was stopped. Question is: do I restart Tecfidera or switch to Copaxone? please advise as to pros and cons. Aubagio is not an option for me. Answer: We try to help people with MS think through the process of selecting a DMT without recommending a particular drug; this is necessary since we are provided with only a small amount of the information required to make treatment recommendations. That being said, it is possible you pulled the trigger too early on Tecfidera; I agree that if your absolute lymphocyte count declined below 500 and remained below 500 for 3 months then it is probably time to stop Tecfidera. You could consider restarting Tecfidera and decide later based on your monthly absolute lymphocyte counts. Good luck -Rip Kinkel MD Here is My Question:
I was hospitalized with a UTI. While in the hospital I contracted Norovirus. I have PPMS. I can no longer stand or walk, despite 4 months of rehabilitation. I am only just beginning to shuffle step my feet. Will I regain any more mobility? Answer: We are so sorry to hear about your hospitalization; your recovery process will depend on two things:
I generally treat the acute infection using the most appropriate antibiotic or antiviral treatment (assuming one is available) and then give people with MS a course of high dose steroids if they are not recovering fast enough. You may want to discuss this treatment option with your physicians. Rip Kinkel MD Question:
Is there any data on disease rebound in patients who switched from Tysabri to Rituximab? Thanks! Answer: Tysabri (natalizumab) is a humanized monoclonal antibody for the treatment of relapsing-remitting multiple sclerosis (RRMS). This disease modifying therapy (DMT) helps reduce the inflammation in the brain and spinal cord, or central nervous system (CNS), that leads to the signs and symptoms of MS. Tysabri has been shown to reduce relapses, the number and extent of lesions seen with neuroimaging in the CNS, and the progression of disability. As with any DMT, individuals will sometimes need to stop Tysabri. In some cases this is because of an increased risk for progressive multifocal leukoencephalopathy (PML), but there are other reasons as well, such as a suboptimal response to Tysabri. However, in a subpopulation of people who discontinue the use of Tysabri, they experience a worsening of symptoms. Disease activity returns to pre-treatment levels or is even worse in some cases, within 3-7 months of the last Tysabri infusion (depending on the study that you read). This is seen as enlarging lesions, increased gadolinium-enhancement on imaging, and exacerbation of symptoms. One explanation provided in the literature is that after discontinuing Tysabri, there is a sort of restoration of cellular immunity and therefore a worsening of neurological deficits. The most severe relapses were seen in those who had the worse inflammatory responses prior to starting the treatment with Tysabri. This worsening of symptoms, it appears, can happen just from discontinuing the Tysabri, and is independent of drug that follows Tysabri. There are some studies evaluating the effectiveness of other DMT after Tysabri discontinuation. Some who switched to Copaxone (glatiramer acetate) while discontinuing Tysabri experienced as much increase in disease activity as those who did not start another DMT, while in another study, they did not. Switching to Gilenya (fingolimod) from Tysabri also did not prevent the reactivation of MS symptoms. Their report showed that during the 8 month follow up after switching to Rituximab, there was no worsening of symptoms. However, at this time, there are no long-term safety reports for Rituximab after discontinuation of Tysabri. This is an area in which research is needed, in order to provide safe strategies for discontinuing the use of Tysabri and preventing disease reactivation. -Deborah Backus, PT, PhD, FACRM Director of Multiple Sclerosis Research The Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shephard Center Here is My Question:
Answer: The most conservative estimate of the risk of PML with a JCV antibody index of 0.4 is < 1 in 2500 after 2 years of treatment. However, most of this risk occurs in people with an index value between 0.6 and 0.9. Until someone (Biogen with the approval of the FDA) decides to raise the cut off value for a positive test, I think it is best to consider this low a positive result. We have no information on the relationship between JCV antibody index and PML risk after Rituximab treatment. The estimated risk of PML after rituximab treatment (taken from patients treated for lupus, rheumatoid arthritis and Sjogren’s syndrome) is less than 1 in 25,000 in all treated patients. This would suggest a 10 fold safety benefit over Tysabri treatment for the risk of PML, if the same risk applies to the treatment of people with MS. Approximately 20 % of people with MS on Tysabri who develop PML do not survive. Outcome is variable in the remaining 80 % and seems to be improving with more careful case selection and monitoring and earlier identification. Perhaps 20 to 30 % are now recovering with minimal residual problems and the remaining patients have significant residual problems. Poor prognostic factors (people who tend to have a worse outcome if they develop PML) include longer duration between onset of PML symptoms and initiation of treatment, greater involvement of the brain on MRI, involvement of the brainstem or cerebellum, higher amounts of the JC virus in the CSF at time of diagnosis, older age and patients previously treated with immunosuppressants before starting tysabri. There is growing consensus that patients at risk of PML (JCV antibody positive) who switch from monthly treatments after 12 months to treatment every 6 to 8 weeks, have a much lower risk of PML Rip Kinkel Here is My Question:
I am 28 and need some help regarding MS. I have been reading and listening to people who have PPMS and I am confused if I have it. Here is what I am experiencing: I was perfectly good until the year 2003. In 2004 I started feeling sleeping arms, pins and needles, lack of concentration and numbness started. Everything progressed slowly. Right now I am still active, but my cognitive skills decreased by 35 percent in these 10 years, legs are bit weak, even arms. No vision problems at all. Sensation of feeling and taste reduced by 30 percent. Reading speed and thinking speed decreased by 35 percent. I have no problems walking, but my legs are weak. In 2011 I was diagnosed with a very low level of Vitamin D and thin bones. Now my Vitamin D is in normal range. In 2012 my vitamin B12 was tested by a neurologist to be at a lower range of 200. So I was given a 1 year, monthly shot treatment. Pins and needles improved. I've had an MRI which was clear and my spine is clear as well. However, the symptoms I still have are, confusion, difficulty remembering, difficulty finishing tasks in time. I'm slow doing any activity. I also have impairment in perception of touch, but I still can feel 60 percent. I also have an irritable bowel. Apart from these I do not have any disabling symptoms that i heard on the videos of PPMS patients. Do you think that mine is a case of PPMS? My doubt is, whether the disease can be so mild and can span across so many years? 10 years? Answer: Thank you for providing this fantastic description of your problems over the past 10 years. To summarize, your symptoms began in late adolescence with bilateral paresthesias in the upper and lower extremities, fatigue, loss of taste and problems with cognition that may have progressed over time and partially regressed after taking Vitamin B12 shots for a year. The evidence in support of a diagnosis of MS is lacking in your description (MRI normal or transiently abnormal). All of your symptoms are classic manifestations of vitamin B12 deficiency including the loss of taste. We would not necessary expect all of your symptoms to disappear with B12 supplementation especially after many years of being symptomatic. I would suggest the following: 1. Talk to your doctors about what caused your B12 deficiency. This is important as some of your symptoms may be caused by associated deficiencies that have not been uncovered or treated yet; these additional deficiencies may include zinc and copper deficiency and folic acid deficiency. These may also cause similar symptoms. 2. Ask your doctors why they think you have multiple sclerosis. Your note does not mention the reason for this diagnosis. 3. You should still be taking oral vitamin B12 supplements; I would recommend using methylcobalamin, not the standard cyanocobalamin 4. You should make sure that both your vitamin B12 level and methylmalonic acid level are normal Primary progressive MS would not present as you have described in your question. Primary progressive MS is also more common in older onset MS (over 40) Good luck and let us know what you discover. 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.
Here is My Question:
I was recently diagnosed with MS and have become very sad? depressed? and so reading about people that are excersizng and walking/yoga, etc. makes me feel even worse because I just don't have the energy to help myself. I tried calling a few therapists where I live but they are either not taking new patients or I have to wait forever. My family is getting frustrated with me. What should I do? Answer: A recent diagnosis of MS is a common time to become depressed and anxious. There are so many things to consider and so many uncertainties about the future that life can seem overwhelming; often people around you are unable to appreciate the effects of many early symptoms and this may affect your relationships. Finding help early is extremely important, but often difficult. The first thing is to make sure your primary care doctor and MS specialist are aware of how you are feeling. They may refer you to a specific therapist or to a local MS advocacy group. Contact an MS organization for help including the MS Association of America (MSAA), the National MS Society (NMSS) and the MS Foundation. Depending on where you live at least one of these groups should be able to provide a recommendation. In the interim there are certain things you can do to help yourself:
Good luck Rip Kinkel MD Here is My Question:
I've just been diagnosed with RRMS. How many people with this live with hardly any symptoms? I want to know if I do all the things my doctor has said to do is it possible that I can live 'without' MS? Is there any data showing the percentage of people that become disabled vs those that are fine? Answer: This is a great question and, as you can expect, the answer is complicated. Most studies on the course of MS have not addressed the prevalence and persistence of MS “symptoms” at different time points or stages; instead, they look at presence or absence of abnormalities on examination. As you may know, these examination abnormalities are only the tip of the iceberg; many symptoms and MS related problems remain hidden beneath the surface where they are not visible to either those around you or your physicians. To address this major gap in our knowledge many studies now collect patient self reports on symptoms and their impact on quality of life. I recently published a paper on this topic in the international journal of MS care ( Kinkel RP, Laforet G, You X. Disease-related determinants of quality of life 10 years after clinically isolated syndrome International Journal of MS Care 2014 READ MORE). To address this issue we followed patients for 10 years after onset of MS and discovered the following:
So the key to remaining well is to make sure you are on a treatment that eliminates or minimizes, if possible, all disease activity and maintains your maximal physical and mental health. Many of the blogs on this site address how to achieve these goals. -Rip Kinkel MD READ about the importance of vitamin D in this previously written blog...let the sunshine in!
According to clinicaltrials.gov, there are no open studies for Anti-Lingo. They are fully recruited.  |
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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