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I have never seen a drug prescribed to so many MS patients over such a short period of time, as I have witnessed with Tecfidera since its marketing release in March 2013. The reasons for the rapid embrace of this therapy by physicians and patients alike are all valid; this is a relatively safe, oral agent with efficacy at least as good as other oral agents and probably better than most injectable therapies (interferons and copaxone). But this massive prescribing creates one particular problem; both patients and physicians are using this drug without being fully aware of the potential side effects and how to effectively manage them. This can often lead patients to stop treatment prematurely. So I wanted to take some time in this blog to share my experience in helping patients and colleagues manage or prevent side effects from Tecfidera.
The most common side effect of Tecifidera is flushing. If you have ever taken nicotinic acid for high triglyceride levels you know what this means. About 30 minutes to 2 hours after a Tecfidera dose (longer if you take it with food), you may develop redness, warmth and a prickly sensation typically involving the face, chest and arms. This can last for 20 to 30 minutes before subsiding. Rarely, the flushing can be severe with associated symptoms like your heart racing (palpitations) and chest tightness. Some patients who were not informed of this potential side effect thought they were experiencing an allergic reaction. This side effect can be blocked or minimized (if even necessary to treat) by taking an aspirin (81 to 325 mg) in the morning. If you are unable to tolerate aspirin or allergic to aspirin you can try ibuprofen (eg motrin) or acetomenophen (eg. Tylenol) but they do not tend to work as well as aspirin. Less commonly, patients experience night sweating after starting Tecfidera. Many patients have found that an aspirin (81 to 325 mg) at bedtime can minimize this problem.
The potentially more troublesome side effects of Tecfidera involve the gastrointestinal tract. These side effects can be separated into upper and lower GI symptoms. The upper GI symptoms include nausea and pain in the epigastric region (just below the sternum or breast plate), and are caused by Tecfidera sitting in the stomach too long. Taking Tecidera with food helps but is often not good enough. I have found that a drug called metoclopramide (5 to 10 mg) taken 1 hour before each dose of Tecfidera helps prevent the nausea and clears the drug more quickly from the stomach to prevent pain. If this symptom is a problem for you, make sure you ask your MS specialist about this remedy. Since most side effects begin when the doctor is not available, I always send patients home with a prescription for metoclopramide to have available if needed.
Lower GI side effects, which include cramping and diarrhea, are equally troublesome. Thankfully, you usually do not need your doctor to help out; simply pick up some over the counter loperamide (the brand name is Imodium) and take 2 mg twice a day until this symptom subsides. If this does not work you may need to contact your MS specialist for a prescription strength medication.
The remarkable thing about Tecfidera is that most of the side effects tend to either disappear or become insignificant after 4 to 8 weeks. It is during this period of time that you may need help managing these symptoms. If the side effects remain problematic for more than 2 months this may not be a good drug for you. When side effects are a problem, they usually disappear within 24 hours of stopping the drug. Certainly, side effects that persist or worsen more than 24 hours after stopping Tecfidera should prompt you to contact your doctor immediately. Often I will have patients experiencing annoying or troublesome side effects stop Tecfidera for a few days before restarting the medication at a lower dose and gradually increasing to full dose again using the strategies discussed above to prevent a return of the side effects.
As always, every patient situation is different and you should discuss these issues with your doctor before initiating one of the remedies mentioned in this blog.
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: Do women, or what proportion of women, that discontinue Tysabri because (and only when) they become pregnant, experience rebound relapse during pregnancy. Thank you!
Discontinuation of Tysabri therapy after more than a year of treatment is associated with an increased risk of relapse, typically 4 to 8 months after the last infusion. In some cases these relapses are quite widespread and severe. Patients with active disease before starting treatment with Tysabri, usually defined as recent relapses and multiple enhancing lesions on MRI prior to starting Tysabri , have the highest risk of relapse after stopping Tysabri therapy, even if Tysabri was completely effective at shutting down all evidence of active disease.
The most common reason for stopping Tysabri in these circumstances is the desire to get pregnant or concern about developing PML (Progressive Multifocal Leukoencephalopathy) with continued treatment. Normally, pregnancy is partially protective in MS patents during the 2nd and 3rd trimester but there are increasing reports of patients stopping tysarbi and experiencing severe relapses even during the 2nd and 3rd trimester. These relapses coincide with the period of greatest risk for relapses after stopping Tysabri, in other words 4-8 months after the last infusion. One approach is to stop Tysabri and not attempt pregnancy until you are beyond the risk period for these more severe relapses but undergo frequent MRI and clinical monitoring by your MS specialist during this period to ensure your MS is not becoming too active to attempt pregnancy. Often we will place individuals on copaxone immediately after the last infusion of Tysabri or even before stopping Tysabri in an attempt to prevent Tysabri withdrawal relapses. The best approach and advice will depend on your individual circumstances. I would suggest discussing this with an MS specialist who has significant experience with the use of Tysabri and managing pregnancy in MS.
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.
Well, it’s that time of year and many MS patients are asking if they should receive a flu shot. Let’s start with the unified recommendation from the CDC (Centers for Disease Control) and the NMSS (National MS Society); both recommend the flu shot (BUT NOT THE NASAL MIST) for everyone with MS, preferably at least one month before starting a drug that may suppress cell mediated immunity such as Gilenya, Aubagio, Tysabri or any chemotherapy, even though studies suggest many people taking these drugs will mount adequate antibody responses after the flu shot. If that’s all you need to know, feel free to stop reading now and go get the flu shot. For those slightly more curious, read on a little.
What is the flu?
The flu is a general term for upper respiratory tract infections caused by influenza A and B strain viruses (the flu shot is trivalent and protects against two strains of influenza A including the notorious H1N1 strain and influenza B). Most “flu like” illnesses are not caused by the strains of influenza viruses for which the flu shot provides protection but during the correct time of year (late fall to early spring) and certainly during an epidemic these influenza viruses can predominate. Influenza tends to cause high fever, severe body aching, running nose and congestion, cough and sometimes pneumonia. If you get influenza you should generally stay at home and away from coworkers and non-family members until you have been completely free of fever for 48 hours.
How well does the flu shot work?
Under ideal circumstances, the CDC estimates that the trivalent influenza vaccine (the type used in the flu shot) reduces the risk of infection by 60%. This response rate is highly dependent on the strain of influenza virus (es) that happens to be causing the flu in any given year and the characteristics of the individual receiving the flu shot. Specifically, those people very old or young or ill may not mount an adequate immune response against the flu even after the shot. Perhaps the major reason people often feel the flu shot is infective is because they experience a flu like illness not caused by an influenza virus and incorrectly assume the flu shot did not work for them. The flu shot is a classic public health response to a problem; although responses to the shot are variable on an individual level, the societal benefits are great by potentially limiting the spread of epidemics.
Is the flu bad for MS patients?
This answer is fairly clear; flu like illnesses (influenza and non influenza types) increase the risk of MS relapse by 1.3 to 3.4 fold during the at risk period (2 weeks before onset of flu until 5 weeks after the flu). Many of these relapses are called pseudo-relapses or simply an increase in prior MS symptoms for 24-48 hours during the period of fever and acute illness. However, both pseudo relapses and real relapses can significantly reduce independence, especially for more disabled patients. There is some evidence to suggest that patients with influenza A infections (one cause of flu-like illness and the one for which people receive the flu shot) may experience an even high rate of MS relapses than those experiencing other flu like illnesses.
Can the flu shot cause harm in MS patients?
The evidence from multiple studies suggests that the standard trivalent flu shot is safe in all MS patients and does not increase the risk of MS relapse or worsening. If you are allergic to eggs, you will need to receive the shot without egg products. You should NOT receive the flu mist vaccine as this is a live attenuated virus and not recommended for MS patients.
Dr Kinkel’s overall recommendation:
Like the NMSS and the CDC I recommend the flu shot for all MS patients. This recommendation is strongest for those patients more at risk because of disability, those who are healthcare workers or childcare workers (because of greater exposure) and those who are immunosuppressed (in order to prevent more severe flu or secondary infections).
Here is a question that just came in..."Does a person, stable on meds and with clear or largely clear MRI scans really need an MS specialist? Can a PCP care for them, prescribe medication and monitor the progress and effects?"
The answer is yes, the person does need to see an MS specialist; all medications have risks that must be monitored by an individual with expertise in the use of those medications and monitoring for disease activity is complex and involves far more than regular MRI scans. MS medications in particular are becoming more complex and risky, similar to the situation with cancer and HIV drugs. Most individuals would not consider allowing their PCP to monitor cancer treatments and most PCPs would be reluctant to do so. This being said, some individuals require only infrequent visits to an MS specialist, perhaps every one to two years. Most of these individuals have demonstrated stability for several years and likely have a more benign or less active form of MS. These are all issues that you should discuss with your MS specialist.
I am often asked to provide advice on diets, vitamin supplementation or other complimentary approaches to the management of MS. While there may or may not be a role for some alternative approaches to MS management, I find that patients are often putting the proverbial ’ Cart ahead of the horse’, when they ask these questions. The question that should be asked is, how do I remain active, independent, socially engaged, and overall mentally and physically healthy with this disease? This is no small task given the barriers and challenges faced by MS patients. Some in the neurological community believe these goals can only be achieved with so called disease modifying therapies of which the older injectable therapies are usually regarded as the platform therapy on which all other treatments are built. While it is true that these pharmacologic disease modifying therapies have a significant role to play in MS disease management, I have a different idea of what represents a platform therapy. To me platform therapies represent those management strategies, often adjustments in lifestyle and health behavior, that will prevent the development of or modify those other medical conditions (known as co-morbid conditions) known to have a detrimental physical and mental effect on MS patients. So what are these health behaviors and co-morbid medical conditions? I think you know the answer but I will list them anyway (in no particular order):
3. Type II Diabetes Mellitus
6. Low vitamin D levels
7. Depression, anxiety and chronic daily stressors
Every one of these health behaviors or conditions has been shown to have a detrimental effect on MS outcomes . More importantly, some of these risk factors interact with one another in a synergist manner, meaning that their combined effects are worse than their individual effects. So what is my platform therapy prescription? It involves 5 crucial steps:
First, focus on improving your mental health; without modification of chronic symptoms of depression and anxiety, modification of common chronic stressors harmful to your MS and your health, and continued social interaction and participation, other therapies will fall short in achieving their goal. This can be a tall order. You will lay the foundation for this goal by stopping unhealthy behaviors, exercising regularly, eating well and taking care of other health concerns (see below). But this is often just the starting point. Now is the time to consider a closer examination of lifestyles, relationships, and career or work issues. While it can be difficult to find a therapist, either group or individual, that works for you, it is well worth the effort. Often online support groups now form the basis of support for many patients. Some patients will require medications as well but rarely in isolation. Most importantly, it is time to consider what is important and what is not important in your life in order to help in this process. But remember this is a lifelong process; do no be discouraged and always keep working to achieve peace and happiness.
Second, stop harmful health behaviors, notably smoking. Although alcohol consumption in moderate amounts has not been linked to more rapid progression of MS, alcohol abuse and other illicit forms of drug use, particularly cocaine and narcotics, are in my experience associated with worse outcomes..
Third, build a pattern of behaviors that is likely to achieve ideal body weight and maintain activity levels. This is extraordinarily difficult for many and often a lifelong struggle. I am not a big advocate of a particular diet; in fact it seems that the best results occur with increased activity level associated with a reduction in calories and a change in diet. Over the years, many of my patients have reported feeling better and losing more weight after switching to gluten free or gluten light diets. While there is no evidence that this diet specifically alters the course of MS, it certainly seems to have indirect benefits. In those patients morbidly obese (usually defined as 100 lbs over ideal body weight) despite efforts to reduce their weight, I am a strong advocate of bariatric surgery, although the safest and most appropriate bariatric procedure will require consultation with your physician and a qualified bariatric center. Increased activity levels are possible in everyone although some patients experience more barriers in achieving this goal, whether as a result of disability, lack of resources or social isolation. Ideally, I want all of my patients to perform aerobic exercise a minimum of 20 minutes a day, 5 days a week. I advise patients to start slow and low and increase gradually, if necessary. A personal fitness instructor or a physical therapist can help you design a program that meets your needs and your physician can advice you on any particular restrictions you may need to follow. Additional strategies must include progressive resistance training (basically weight lifting) to improve and maximize muscle function. Again a personal fitness instructor or a physical therapist can help you design an appropriate and safe program. Lastly, many patients report benefits in flexibility, strength and physical and mental well being as a result of group or individual yoga programs.
Fourth, supplement your diet with vitamin D3; the evidence is clear that low vitamin D3 levels are associated with the risk of developing MS and MS disease activity after onset. Whether vitamin D supplementation modifies the course of the disease remains unclear until larger studies are completed. Supplementation with 5,000 to 10,000 IU a day is safe in the vast majority of patients and should achieve your goal of obtaining a 25 hydroxyvitamin D level over 50, if not closer to 100.
Fifth, focus on modifying co-morbid health states like hypertension, osteoporosis and diabetes if these conditions are present. All too often patients neglect their other physical and mental health concerns after a diagnosis of MS, either as a result of feeling overwhelmed or helpless to achieve the desire results of therapy because of the barriers imposed by their combined conditions. This is a mistake. Hypertension, osteoporosis and diabetes are all associated with a more rapid rate of MS progression. Diabetes in particular creates a number of management issues in MS patients and makes the disease more difficult to treat.
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.