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Adherence
People often ask me how to get their friends and family to follow their doctor’s recommendations and we, as doctors, often wonder if our patients, particularly those who come in alone for visits, are taking their medications as directed and following other non medicinal recommendations. There is an entire field of research devoted to this topic and some general recommendations that are useful. The most important thing to remember is that this is an ongoing process. Even if a person follows a recommendation initially this rarely lasts without persistent follow-up and attention to the process outlined in this blog. Let’s first consider the concept of adherence and the process anyone goes through when making a decision. This will help you see where things can break down.
Dr. Kinkel
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Question: The TISCH MSRC has started a Phase I trial for SPMS doing autologous BMT. Are there any there other centers that are involved in this research?
Answer: Stem cell transplantation procedures for inflammatory disorders like MS come in several flavors:
All of these procedures are still considered experimental and can not be recommended at this time. Rip Kinkel Whether you like it our not, we co-exist with more than 100 trillion microorganisms in our intestines (colon and rectum) that are essential to our health and survival. These microrganisms (collectively all organisms connected to you are termed your microbiota) in your gut perform essential roles in:
What does this have to do with MS? Well, it turns out that the gut is a major immune system control center that responds to stress, disease, diets and drugs in complex ways that are only beginning to be studied. Preliminary studies suggest that certain diseases may be the result of exposure to microorganizations and/or changes in the normal microbiota due to improved sanitation and altered diets in western, industrialized societies. Some observations, such as the increased incidence of MS in populations that adopt western diets, support this hypothesis. However, a more compelling argument was provided by Dr Jorge Correale, an MS specialist in Argentina. He observed several years ago that MS patients asymptomatically infected with common Helminths (intestinal parasites commonly referred to as worms) experienced a dramatic reduction in MS activity including reduced relapses, new MRI lesions and disease progression. This benefit persisted as long as the Helminth infection was allowed to persist. If the patient developed symptoms from the Helminth infection (eg. diarrhea, weight loss, anemia) and required treatment to eradicate their worms, their MS activity tended to return promptly. He was also able to link the beneficial response to Helminth infection to improved regulation of immune responses and reduced inflammatory responses designed to fight off infections. They and others have proposed that Helminths were once a common symbiotic parasite in the human gut that helped control human immune responses. This control of immune response helps both the worm and the human; the worm gets to survive destruction by the human immune system and the human experiences less of an inflammatory response to environmental stimuli (foods or harmful organisms) that can cause disease states like allergies, eczema and possibly autoimmunity. Of course, the harmful effects of a symptomatic Helminth infection potentially offsets this control of other disease states. So what can you expect to read and hear about in the near future regarding alterations in gut microbiota and your multiple sclerosis? 1. Studies are underway to determine if controlled, asymptomatic infection with Helminths is beneficial to MS. The studies have cute, easily recognized acronyms such as TRIOMS and WIRMS and should report results in the next 2 years. However, it will be very important to extend the observation periods of these studies to ensure that there are no long term health risks associated with chronic helminth infections. 2. Studies are underway to characterize the diversity and molecular properties of gut microbiota in different disease states and better understand the signaling pathways that result in certain beneficial and harmful downstream effects on human health. These studies will dominate the headlines and draw excessive conclusions that will not be justified until controlled interventional studies are undertaken. 3. It is likely that you will start to hear about studies of fecal transplantation for diseases like MS. This is gaining in popularity for certain diseases of the GI tract linked to pathological alterations in gut microbiota, such as Clostridium difficile infection, and will almost certainly spread (excuse the pun) to other disease states. Is there anything you should be doing about your microbiota now to benefit your MS? Certainly, there are no demonstrated benefits to any particular intervention; but since this has never stopped any of us from trying out new things, here are some suggestions. 1. The health craze that involves colon cleansing and a return to more natural diets, particularly the Paleo diet, has its roots, knowingly or not, in the concept of altering your gut microbiota. As there is no known harm and many patients report feeling better, it is a program I support, although I personally avoid the colon cleansing part of the routine. I suspect that other dietary alterations such as gluten restriction have a similar effect. In general my recommendation on diets is that an individual should shop around the edges of the grocery store and at farmer’s markets. Edge shopping at grocery stores specifically means avoiding the processed foods and grains in the aisles and confine your shopping to the produce, meat, poultry, dairy and nuts section. There are many variations on this theme but one should try to at least accomplish this basic approach. 2. Probiotic supplements are very popular but expensive and little is known about which products are beneficial or potentially risky in MS. Most of the marketed supplements contain different strains of lactobacillus or bifidobacterium that may have very different effects on your body. These products are more well known for their beneficial effects on irritable bowel syndrome or travelers diarrhea and those containing bifidobacterium strains seem useful for dental gum disease. Generally, for MS patients I recommend fermented foods high in probiotics. Yogurt with the label, “Live active cultures”, is a good source of probiotic organisms. Other fermented products known to be good sources of probiotics include kefir, sauerkraut, pickles and kimchi. Bon Appetit Question from an MS Patient: My most limiting problem right now is managing neurogenic bladder. I have an Interstim implant for detruser muscle control. A Kegel program may help, but I want to know more about the frequency of exercises necessary for change. Thank you.
Most patients with MS, particularly those with more advanced disease, have a complicated neurogenic bladder that requires multidisciplinary management. Kegel exercises (also called pelvic floor exercises) are sometimes useful but the results are rarely as gratifying as the results achieved by woman with urination problems from prior pregnancies or aging. Medications and Interstim devices are usually reserved for women who do not respond to Kegel exercises. This being said, I have copied our directions for performing Kegel exercises (these come from the Mayo Clinic) in the section below. If you are unable to voluntarily learn to control the pelvic floor muscles as described in the section below, you should obtain a referral to a physical therapist specializing in pelvic floor exercises. The physical therapist will use biofeedback techniques to teach you the procedure. How to do Kegel exercises It takes diligence to identify your pelvic floor muscles and learn how to contract and relax them. Here are some pointers:
For those of you too young to appreciate my reference, Let the sunshine in, was the second of two songs in a medley for the musical, Hair, made popular by the 5th dimension in 1969. Heading west to find oneself as well as sunshine was all the craze at the time, but I am apparently a slow learner since it took me over 40 years to move out west. But I digress; I intended to talk about Vitamin D, the sunshine vitamin, and MS. If you bear with me, I will even provide the name of the first song in the hair medley that accompanied, Let the sunshine in.
First the facts:
Why should you take Vitamin D for your MS? For many years epidemiologists have appreciated a latitude gradient with MS incidence; namely, the further north you go from the equater in the northern hemisphere or the further south in the southern hemisphere, the incidence of MS rises. Most evidence suggests that this latitude effect is due to decreasing exposure further from the equator to the ultraviolet B light required to make vitamin D in the skin. More recently we’ve learned that vitamin D is involved in the regulation of the innate and adaptive immune system as well as it’s typical role in calcium and bone metabolism. The evidence in support of a role for vitamin D deficiency in MS is mounting rapidly and includes the following information:
To answer many of these questions, several controlled clinical trials are underway in the United States and Europe to determine if high dose vitamin D Supplementation is beneficial in MS. If you are interested in learning about these studies, please go to clinicaltrials.gov and search for studies of vitamin D in Multiple Sclerosis. Since all studies suggest that doses under 10,000 IU a day are safe, it is most prudent to begin supplementation now unless there is a contraindication to treatment. Please check with your doctor first to determine if vitamin D supplements are safe in your situation. Now back to the trivia question that started this blog; the first song in the Hair medley was called, The age of Aquarius. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego
We do not have an adequate explanation for this phenomenon at present. If a patient is receiving Tysabri every month, receptor concentration remains well above 90 % in all patients. It is still possible that Tysabri has some direct effects on CNS cell types that follows a different time course, but this seems unlikely. --Dr. Kinkel
That is very hard to answer. Generally, the best way to determine if stress is a major aggravator of symptoms is to perform a simple experiment. Track the intensity of the symptom (s) during the period of stress (perhaps during the work week if that is the potential cause) and during periods when the stress is removed (a prolonged vacation for this example). Weekends are not necessary the best time to determine if work is the cause of the stress, since many individuals find themselves overly stressed by the need to attend to all personal and family matters during the weekend. If symptoms significantly improve on vacation, assuming the vacation is not creating problems, you have your answer. Although multiple sclerosis (MS) is less frequent in African Americans, it also tends to be a more severe disease in blacks by almost all measures; their disease tends to start a little earlier, their relapses are more severe with less recovery, their MRI scans show more widespread evidence of disease and injury at the same point in the disease course and they tend to become disabled more frequently and at an earlier age. The reason for this difference in MS severity between whites and blacks with MS is totally unknown but an area of active research. Most genetic association studies suggest that the genetic polymorphisms associated with MS severity in caucasians are similar to the haplotypes associated with MS severity in African Americans, although these polymorphisms explain only a minority of the reasons for MS severity in any group. Future research will likely define populations by genotype instead of phenotype (i.e. the color of your skin) to help answer these questions since it very difficult to determine genetic background by skin color alone. For instance, a large study in progress to investigate the genetics of MS in African Americans reported that genes of European ancestry ranged from 1 % to 71 % (median 19 %) in their study population.
Preliminary evidence suggests that African Americans may not respond as well to some MS treatments, although the studies are not conclusive. For instance, one study suggested a lower response rate to interferon treatments. Thankfully, another study suggested very good responses to Tysabri. My general approach to treating African Americans with MS is to monitor their response to treatment very closely and escalate to highly active treatments (Tysabri, Rituximab) earlier than in typical caucasian patients. Future determination of genetic/ethnic differences in response to therapy will require large community based research populations currently being assembled to answer these questions. Stay tuned for more information in the next year as research projects sponsored by the Accelerated Cure Project begin enrolling patients. --Dr. Kinkel Question: I would like to give traditional Chinese medicine a try. Aside from acupuncture, my doctor is recommending taking herbal preparations. Should I be worried about the potential interactions of these herbs and my MS medication?
We do not know of any potential interactions with biological agents (interferons, copaxone and tysabri) used to treat MS. We also do not know of any interactions with Tecfidera. For small molecules like Gilenya and Aubagio, you should ask your MS specialist or contact the company directly to learn of any potential interactions. --Dr. Kinkel PLEASE NOTE: The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician 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: We know that Tysabri is very effective in reducing relapse frequency and appearing of new lesions, but how effective is it in preventing progression? Or conversion from RRMS to SPMS?
Answer: Several small studies suggest a benefit of Tysabri for secondary progressive MS. A large definitive clinical trial called ASCEND, funded by Biogen Idec, is underway with expected completion by the end of 2014. Q: Is it possible that the same person could respond to prednisone, but not to methylprednisolone during a relapse? Aren't they too similar for this to be true?
A: Prednisone is usually given orally after a series of methylprednisolone infusions. It often appears that the prednisone works better if the benefits from the combined steroid treatments do not kick in while you are receiving the methylprednisolone infusions. In addition some patients experience side effects on the higher doses used with methylprednisolone and these side effects may counter any apparent benefit.
The answer to this question depends upon whether the IV Ig or ACTH (acthar gel) is being used to treat an acute relapse, to reduce the chance of future relapses in patients with relapsing remitting multiple sclerosis or to prevent the accumulation of disability in any patient, particularly progressive patients: Treatment of Acute Relapses:
Prevention of relapses in patients currently stable:
Prevention of the accumulation of disability in relapsing or progressive MS:
Q. How can you tell if steroids are or aren't helping a particular flare? For example, if steroids are given very soon after the symptom onset, and if symptoms keep on getting worse for another 10 days after the last day of steroid admission, and then take a month to (more or less) go away, would you that steroids worked or not?
A. Very good question and hard to give an answer that is true in all circumstances. Generally, steroids start working within the first week if not the first few days. A person still worsening 10 days after starting steroids is probably not responding, even though we usually use the two week cutoff to define a non-responder. In the example given it is more likely that the improvement was spontaneous. After all, we do call this phase of the disease relapsing remitting for a reason. --Dr. Kinkel Here is a comment we recently received:
"It seems a gluten/diary-free diet has some effect on my energy level. It is very difficult in this society to keep this sort of diet, but this and the "paleo" diet seem to be helpful. Not for symptoms like mobility issues or incontinence, but energy and sleeping. I would like to have more information about this and how it works and any studies being done about MS and diet." The following link is a search of all current studies listing at the Federal Government Clinical Trials registration site assessing diet in Multiple Sclerosis. I believe the only study recruiting patients is at the University of Iowa testing both Gluten free and paleo diets. We do not know how these diets work or if it is just a placebo effect but many people with MS report improved energy and well being. http://clinicaltrials.gov/ct2/results?term=Diet+and+Multiple+sclerosis&pg=1 --Dr. Kinkel It is very rare to go through life with MS as your only medical problem. Often new or worsening symptoms are either directly or indirectly related to another condition. For instance, if you experience a urinary tract infection that you are not aware of (not an uncommon event), many of your usual MS symptoms can worsen until the infection is treated. Other symptoms, such as fatigue and forgetfulness, can be totally unrelated or indirectly related to MS; in fact depression and sleep disruption are two of the most common causes of these symptoms.
Lastly, even if new symptoms are emerging or worsening directly as a result of your MS, it doesn't mean the MS is getting worse. Some symptoms seem to emerge more commonly during the recovery phase of relapses and would indicate attempts at regeneration or scaring. This is why you need the help of an experienced MS specialist to sort out these issues and help you find the appropriate treatment. These are complex issues and even a skilled MS specialist will often find it difficult to determine at first to determine if your worsening symptoms are directly attributable to your MS. However, the cause usually becomes apparent over time. I hope this information helps. --Dr Kinkel Drinking alcohol appears to have a dose-dependent inverse (opposite) association with the risk of developing multiple sclerosis (MS) and researchers suggest their findings give no support to advising patients with MS to completely refrain from alcohol (see link below).
http://media.jamanetwork.com/news-item/inverse-association-between-alcohol-consumption-multiple-sclerosis/ Numerous studies have indicated the health benefits of moderate alcohol consumption and this study is consistent with these prior studies. However, moderate alcohol consumption is not in the eye of the beholder; consuming greater than one drink a night on a regular basis can lead to other problems. Furthermore, MS patients often find that consuming alcohol can increase their MS symptoms in an unpleasant way. So find your own tolerance level for drinking and do not drink to excess. --Dr. Kinkel We have discussed the individual steps that must be taken to achieve your desired health outcomes but have yet to discuss the most important issue; how do you actually do it? It is easy for me to tell you to stop smoking, exercise, eat well, lose weight, and take your medications but why is it so difficult to accomplish these goals and why do so many people give up? Perhaps the best model to explain the success or failure of these human activities was developed by Albert Bandura at Stanford. According to his model, the success of any human endeavor requires a perceived belief that an action will achieve an outcome (i.e. stopping smoking will make me happier and healthier) and the sustained belief that you are capable of carrying out this action. This is collectively referred to as self-efficacy.
To quote Dr Bandara, A strong sense of efficacy enhances human accomplishment and personal well being in many ways. People with high assurance in their capabilities approach difficult tasks as challenges to be mastered rather than as threats to be avoided. Such an efficacious outlook fosters intrinsic interest and deep engrossment in activities. They set themselves challenging goals and maintain strong commitment to them. They heighten and sustain their efforts in the face of failure. They quickly recover their sense of efficacy after failures and setbacks. They attribute failure to insufficient effort or deficient knowledge and skills, which are acquirable. They approach threatening situations with assurance that they can exercise control over them. Such an efficacious outlook produces personal accomplishments, reduces stress and lowers vulnerability to depression. In contrast, people who doubt their capabililities shy away from difficulty tasks which they view as personal threats. They have low aspirations and weak commitment to the goals they choose to pursue. When faced with difficult tasks, they dwell on their personal deficiencies, on obstacles they will encounter, and all kinds of adverse outcomes rather than concentrate on how to perform successfully. They slacken their efforts and give up quickly in the face of difficulties. They are slow to recover their sense of efficacy following failure or setbacks. Because they view insufficient performance as deficient aptitude it does not require much failure for them to lose faith in their capabilities. They fall easy victim to stress and depression. I face both sets of problems in my own life and in my attempts to help people with their health; first, I must deal with my own skepticism with regard to many treatments, particularly those that are untested, as well as the skepticism of patients regarding medical advice. For instance, there are people who do not believe any of the drugs approved by the FDA will help their MS. While this is certainly an extreme example, I see many more people with smaller yet significant doubts regarding my medical recommendations. These doubts have persistent and enduring affects on their health outcomes. Perhaps the patient fails to take their medication regularly since they are not totally convinced it will help. Similarly, a person less committed to a treatment will give up on it whenever an event or a piece of information arises that serves to reinforce this opinion. Often this information is totally bogus but this makes little difference since it reinforces a preconceived notion. In all these cases it will not be possible for me to affect a desired outcome unless I can learn why the patient is only partially committed to my recommendation. The second problem, the perception of being incapable of accomplishing a goal, is far more pervasive and often reinforced unknowingly by those around us. Thankfully, self-efficacy is not a built-in personality trait. This is something that varies from experience to experience; some people have high levels of self-efficacy for some activities and lower levels for others. So how do you improve self-efficacy? There are generally four ways to do this:
Working with your health network (i.e. doctors, other health professionals, family and friends) to improve your self efficacy is the number one thing you can do to improve your health and is the foundation upon which rests all actions and behaviors to improve outcomes in people with chronic conditions. Whenever you see yourself faltering in a recommended or required behavior, begin by asking what are you doing wrong and how can you solve it. Take responsibility and find help if required. Do not give in to self-doubts and self pity; accept set backs as a learning experience, correct your behavior and move on without regret and without looking back. If you are persistent you will achieve your goals. PLEASE NOTE: The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician 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. Q. I been on Tysabri for a year with worsening symptoms but still my Neuro wants me to be on it for another year. I asked why and he said it is best for my type of MS. Does it take that long to see improvement?
A. My response is somewhat complicated but bare with me for a second and I think you will understand. First, Tysabri may not improve your symptoms, even if it is totally controlling your MS. The reason is that symptoms are complex and mostly caused by prior injury in your brain and spinal cord. Since none of the treatments repair your nervous system, it is sometimes unreasonable to expect an improvement in symptoms. Now you also mention that your symptoms are getting worse while on Tysabri. Worsening symptoms can be related to your MS getting worse or can be totally unrelated. It is up to your MS specialist to figure this out for you. I suspect your MS specialist has not observed any changes on your examination or your MRI scan since you started Tysabri and this is why he or she is recommending your continue treatment. However, it will also be important for your doctor to address and treat the symptoms that are bothering you. Why not ask for a visit to only discuss what is causing these symptoms and how to treat them. Do not bring up any other issues or concerns during this visit so that the problem gets addressed adequately. Hope this helps. --Dr. 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.
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