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Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
Here is My Question:
My son was diagnosed with MS 3 years back. He did not take any medication and had no problems. Three weeks ago he got an electric shock while starting a generator. This triggered symptoms like numbness in his leg and arm. He just got out of the hospital after a 5 day course of steroids. His hand is still short weak. His MRI showed 2 new active lesions. He is 20 years now. Is it wise to start injections? Answer: In general if someone has MS and is having ongoing relapses (regardless of cause) then we do recommend going on some form on disease modifying therapy. Which one is up to the individual patient in consultation with their treating clinician. 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 Question:
Can Rebif cause PMI in people with MS? Answer: There is no evidence that any of the interferons or glatiramer acetate are associated with the development of PML. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Clinical Neurosciences Director Professor of Clinical Neurosciences University of California San Diego Question:
How long is it safe to take Tecfidera? Answer: No one knows how long it is safe to take Tecfidera. Even though it has been used to treat psoriasis for several decades, the average duration of treatment in psoriasis patients was less than 2 years. There are now many MS patients who have been on this medication for 3 years. We believe it is safe as long as you do not experience a prolonged reduction of lymphocyte counts but we will need to follow patients for many years to be completely certain. I would remind you that is true of many treatments used in medicine. It takes many years after a medication is approved to determine the long term risks of the therapy. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Question:
I have been on 5 medications. Avonex, changed due to silent exacerbations, Rebif for 11 yrs, changed due to efficacy no longer working, Tysabri, stop after 2 yrs due to JC virus, Tecfidera, not efficient enough, and Aubagio, stopped due to skin peeling reactions and high blood pressure. Even though my MRI's may show no new lesions, I am losing my balance, and my vision is deteriorating from constant optic neuritis. I want to try the new medication Lemtrada, because I did the absolute best on Tysabri and I seem to do better on IV medications. However, my neurologist says that I am not sick enough and refuses and says other neurologists will refuse also. Now, I am currently on no medication because the one the neurologist backs (Copaxone) takes 9 months to get into the system and I want a medication that slows down all symptoms not just the lesions on the brain. Is this true about no neurologist prescribing Lemtrada? How can I get this new medication prescribed to me? Answer: First of all it sounds like you have secondary progressive MS, since you describe progressive worsening problems with balance and vision in the absence of relapses or new lesions on MRI. You may be in the early stages of SPMS, but I can not determine this from your description. There is no evidence that Copaxone is beneficial at this stage of disease and this option would not be appropriate. Tysabri was not beneficial in a recent secondary progressive trial, although people in the early stages often benefit from Tysabri. Lemtrada (alemtuzumba) was not helpful to people with secondary progressive MS but similar to Tysabri may be beneficial in early SPMS patients who continue to experience inflammatory activity (relapses or new MRI lesions in the past year or two at most). Based on the information provided, the best choice right now would be Rituximab (especially if you are under age 55), but this is often not authorized by insurance as a treatment for MS patients. The second best choice is to restart Tysabri, since you know you responded and tolerated this treatment in the past, and switch to Ocrelizumab when this is approved by the FDA, hopefully by the end of 2016. The risk of PML is only significant after 24 months of re-treatment with Tysabri even in patients who are JC virus positive and you would be switching to Ocrelizumab before that amount of time on treatment. Your risk of PML is particularly low if your JCV antibody index in less than 1.5. To determine if Lemtrada is a reasonable option would require me to gather a lot more information about your condition. As mentioned above Lemtrada was not beneficial in prior secondary progressive clinical trials and there are short and long term risks associated with this treatment. Discuss these options with your MS specialist. Good Luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego 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. Question: How does Lemtrada work? In your opinion is it safe?
Answer: Mechanism of Action: Alemtuzumab (Lemtrada) is a monoclonal antibody directed against CD52, a protein expressed at high levels by both mature circulating B and T lymphocytes and at lower levels on circulating monocytes, macrophages and eosinophils. There is little expression of CD52 on mature natural killer (NK) cells, neutrophils and haematological stem cells. Following treatment there is a rapid and sustained reduction in circulating lymphocytes with a return of the B cell population within 6 months and a more sustained depletion of circulating T cells for more than 12 months. This selective reduction in lymphocytes is presumably the mechanism of action of this treatment in MS. Lymphocytes are the driving force behind all adaptive immune responses and are implicated in the pathogenesis, propagation and maintenance of central nervous system inflammation and tissue injury in multiple sclerosis. Other disease modifying therapies (DMTs) that specifically target lymphocytes include Rituximab, a monoclonal against a protein called CD20 on the surface of only mature B lymphocytes and Natalizumab (Tysabri), a monoclonal antibody that binds to alpha 4 integrin, a protein on the surface of lymphocytes and mononuclear cells required for circulated blood cells to bind to the lining of small blood vessels in the brain and cross the blood brain barrier into the tissue. Following treatment with Alemtuzumab, there is less depletion of lymphocytes residing in lymphoid organs (lymph nodes and spleen) and preservation of neutrophils and bone marrow derived stem cells. The selective reduction in circulating lymphocytes and preserved neutrophils is the reason that few treated patients experience severe infections following treatment. The more rapid return of B lymphocytes compared to T lymphocytes following treatment with Alemtuzumab has been implicated as the reason for the high incidence of system autoimmune disease following treatment. It is speculated that autoimmunity occurs as a result of B cell and plasma cell responses in the absence of normal T cell regulation. Most of the autoimmune diseases following treatment with alemtuzumab involve the thyroid gland. Less commonly autoimmunity can target blood platelets causing a reduction in platelet counts and a high risk of bleeding (called idiopathic thrombocytopenic purpura or ITP for short) orvery rarely an autoimmune disease of the kidneys develops (called Glomerulonephritis). You can also enter "Lemtrada" in the search button on the upper right corner of this page to read more about Lemtrada. http://www.healthcarejourney.com/q--a-for-virtual-ms-center/what-long-term-data-is-there-on-lemtrada Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
How long do Plegridy side effects last? I have just started the treatment and feel grim it has exacerbated all my current symptoms and added more to the mix. Can anyone who has been on it advise please. I was on Copaxone for years with no side effects but was having problems with injection sites. Tried Tecfidera but that was horrendous on the side effects. I am worried I have made my situation worse. I know MS is not black and white but am struggling to know if I have made the correct decision. It also troubles me that there are I am told only a very few people on it in my area so a small pool of knowledge. Any help would be greatly appreciated 😃 Answer: Plegridy is like any other interferon treatment and associated with the well known 'flu like' side effects. These usually consist of muscle aches, malaise (basically fatigue), fever and headaches. These symptoms from immune activation can transiently worsen some of your MS symptoms. Plegridy is also a subcutaneous injection that can create delayed injection site reactions developing over 1 to 4 days. Of course, the benefits of Plegridy include the sustained action over more than 2 weeks and the reduced injection interval ( every 2 weeks). If you are not able to control the flu like side effects with ibuprofen (600 to 800 mg) three times a day or naprosyn 440 mg twice a day (2 Aleve tablets) beginning the day of injection and continuing for 4 days then switching to prednisone 10 mg twice a day (first dose before the injection) for 3 days usually does the trick and is well tolerated. You would need a prescription from your doctor for prednisone. If any of these medications upset your stomach, take them with food and Pepcid (famotidine) 20 mg twice a day. Usually the side effects from Plegridy lessen significantly within 3 months of starting treatment. If you follow these suggestions and still experience unacceptable side effects after 2-3 months you should consider an alternative treatment. The alternative recommended by your MS specialist will depend on your risk factors, age, co-morbid conditions and lifestyle. Oral medications like Aubagio and Gilenya are very well tolerated and effective. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #Plegridy #sideeffects #multiplesclerosis Here is My Question:
I was just diagnosed with RR MS and my doctor is talking about treatment with one of these medications: Tecfidura, Aubagio and Copaxone. In reading about these treatments on your page - my understanding is that they are only to prevent me from getting worse/relapsing, but they won't help me to feel better day to day and with side effects - I may feel worse? Is this correct? Thank you. Answer: It is always important to establish appropriate goals when you start a treatment for your MS. This helps alleviate some of the concerns that you’ve expressed in your question. But let’s discuss some concepts first. Your question seems to imply that if a treatment doesn’t make you feel immediately better, it is not worth taking the treatment. This could not be further from the truth. Many of the persistent symptoms you are experiencing exist because the disease has been active and at least partially damaging your nervous system. This process is likely to continue without treatment. We tend to view symptom management and disease management separately. Symptom management involves a number of approaches (including physical therapy, orthotics, aerobic exercise, progressive resistance training, dietary adjustment, cessation of smoking and other vices, elimination of offending medications, judicious use of some medications to modify symptoms, treatment of co-morbid conditions, meditation, yoga, acupuncture etc) used to modify if not eliminate a particular problem. Disease management is designed to prevent further damage and symptoms from appearing. When you do pick a disease modifying therapy you need to really consider three phases of treatment separately: Phase I: This is the first 1 to 3 months of treatment when you are most likely to experience potential side effects of the treatment. Some treatments like Tecfidera tend to cause side effects early in treatment (4-6 weeks) and then the side effects diminish, if not disappear in most patients. Other therapies like Copaxone may continue to create the same side effect as long as you remain on treatment, notably injection site discomfort and skin reactions. Aubagio can cause hair thinning early in about 1 in 10 people, but this typically resolves within 6 months. Knowing the time course of these side effects and how to manage them is extremely important for making treatment decisions and dealing with whatever side effects emerge. Phase II: This phase generally goes from month 3 to month 18. By this time you should know if you will be able to tolerate the treatment . Now you need to find out if the treatment works. Your neurologist should obtain a new baseline MRI scan of the brain 3 months after starting the treatment (if you plan to continue the treatment). Subsequent MRI scans 9 and 18 months after starting treatment (some neurologists do these scans 12 and 24 months after starting treatment ) can be compared to this baseline scan to see if the treatment is eliminating MRI related disease activity. If the treatment is not eliminating new MRI disease activity, it is probably time to consider a new treatment. Relapses during this time would also be a reason to consider an alternative treatment. Phase III: This phase goes from about 18 month to 36 months. During this time you will be trying to determine if the treatment is continuing to eliminate MRI activity and relapses but, more importantly, you want to know if the treatment is limiting the development of brain atrophy and worsening disability. This usually requires your doctor to use special quantitative clinical and imaging measures. It is also during this phase that the rare long term risks of some of the more powerful therapies (alemtuzumab and Tysabri) emerge. Your doctor must be vigilant and monitor you for these risks at a time when you are feeling quite comfortable with the therapy. I hope this helps with your decision process. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
I have been dx with RRMS for 2 year; I have been on Copaxone since diagnosis and Rituxan for another medical condition - Ocular inflammatory syndrome which is significantly improved on Rituxin. However, I've had a mild to moderate relapse on both drugs. I am considering staying on combo- but there is thought to moving on? What is your advice if could generally comment. I am considering Lemtrada. The ophtho would have to agree. Exercise, diet and spirituality are my coping methods. Thank You. Answer: It is hard to answer your question without knowing the details of your case. For the purpose of my answer I will assume you have an average case of MS and received the usual dose of rituximab (1000 mg IV X 2 doses every 6 months) in addition to the copaxone. Given these assumptions here are some issues to consider: Alemtuzumab is a great drug but causes prolonged immunosuppression and a significant risk of autoimmune disease (involving thyroid, platelets and kidneys). All of these issues can be managed. The bigger concern with someone early in the onset of MS , especially if they are relatively young with an uncertain chance of significant worsening over the next 5-10 years, is the potential for long term direct and indirect negative consequences of this treatment ? For instance, how long can you be treated and retreated with alemtuzumab and will this lead to other complications related to prolonged immunosuppression? What if you require other treatments, such as Tysabri, in the future? We know that a prior history of immunosuppression increases the risk of developing progressive multifocal leukoencephalopathy (PML) on Tysabri therapy. Therefore, treating with alemtuzumab first would create greater risks on Tysabri and potentially other DMTs as well. I would only consider Alemtuzumab in your case if I thought it likely that your disease would significantly worsen and limit your activities and ability to work and function within the next 5 years. Otherwise, I would consider an alternative disease modifying therapy. I hope this helps in your decision making. You will need to discuss your risk factors for near term disease progression with your MS specialist before you will be able to make this decision wisely. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego 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've been injecting Copaxone 20 mg and then it's generic form for three months now (newly diagnosed RR). I have also become incredibly sick with a virus one month (lasted five days), and bacterial infections (upper respiratory, eyes; lasting 5-7 days) the subsequent two months. I've also had a week of relapses all three months. My understanding was Copaxone/Glatopa was not an immune suppressant but was instead supposed to increase the amount of healthy white blood cells and their action in my immune system, reduce relapse rates and slow lesion/disease progression. Instead, I feel as if everything's becoming worse in my body. What is happening? How can I be this sick with a virus or bacterial infection monthly, continue relapsing (though I'm relapsing a bit less) and have any sort of life? Is this common for users of this drug? I'm beside myself. Answer: There are many potential explanations for the recurrent infection but without knowing the details of your case it is hard for me to comment. What I can tell you is the following: 1. Copaxone or Glatopa does not suppress your immune system and I doubt it is responsible for the prolonged infection 2. Steroids can suppress your immune system, so if you received steroids in the past 3 months this may be your explanation 3. All disease modifying therapies like Copaxone take time to start working. It is not unusual for people to relapse in the first few months on treatment. It is the relapses beyond the first three months of treatment that create greater concern that the drug will not be effective if continued Good luck Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
So, I am up to 4 lesions on my brain now. My doctor wants me to start on a DMD. He is hoping to start me on Tysabri, but there is a risk of PML so I am having a blood test for the JC virus in the morning. I was wondering what your thoughts were. He's also considering Copaxone, Aubagio or Avonex and has kind of left it up to me to choose. Any insight would be a blessing. Answer: It is somewhat hard to provide advice given the information you’ve provided but let me give you some information to help you think through the process of making a treatment decision 1. The average person with MS has more than 4 lesions on MRI when they present with their first symptoms of MS. 2. I am assuming you have few outwardly apparent problems from MS which you be typical for someone early in the course of the disease. How MS is affecting you at present is not stated in your question 3. There are no validated treatment effect modifiers for any of the disease modifying therapies. This means that there are currently no tests or features that tell us whether a person will respond to a particular treatment . The only current treatment modifier is a progressive disease course. Progressive disease is a negative modifier meaning that this predicts non response to all current treatments. 4. All the DMTs mentioned in the list are potential treatment options for a person who has never been on treatment. Given the information provided I am not sure I would consider Tysabri even if you were JC virus antibody negative, but your MS specialist probably knows more about your case. That leaves you with Avonex (a once a week injection with flu like side effects), Copaxone (a daily or three times a week injection that hurts and causes skin reactions in many) or Aubagio (a pill that is generally well tolerated but may cause a little hair thinning for a while and requires some monitoring blood tests for a few months). This is a situation where it is nice to have choices. The last three options mentioned are remarkably safe, so start with the one that fits your lifestyle best. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
What are Plegridy's ingredients? Answer: Plegridy is Beta interferon 1a (identical to Rebif and Avonex) with a Polyethylene Glycol attached to increase the apparent size of the molecule and decrease its clearance by the kidneys. This increases the availability of the interferon so you can take fewer injections. Pegylation (attaching a polyethylene glycol chain to a biological molecule) is a common trick used by pharmaceutical manufacturers to increase the duration of action of a biological agent for many disease states. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
Is it common for a MS patient to experience weight loss while on Tecfidera ? Answer: Weight loss is not common on Tecfidera unless you have persistent gastrointestinal side effects like lack of appetite, nausea, abdominal pain, cramping and diarrhea. Since these side effects tend to either go away after several weeks or the person stops taking the drug, weight loss tends to be minimal. That being said, I did have a very stoic patient who continued on Tecfidera for many months despite persistent gastrointestinal side effects and that individual lost a lot of weight. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #Tecfidera Here is My Question:
Is there any problem taking antibiotics while taking Plegridy? Answer: There is no problem taking antibiotics while taking Plegridy to treat your MS. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #Plegridy Question:
Why did Biogen make Plegridy a subcutaneous shot instead of an IM one like Avonex? I'm switching from Tecfidera (which I took from 5/2014 to 5/2015) to Plegridy on June 12 because of my persistent low lymphocyte count, and I'm feeling very nervous about the possibility of injection-site reactions. I took Avonex for over 14 years (2000 to 2014), and never had an injection-site reaction. My neurologist didn't want me to go back on Avonex because I had 2 flare-ups within a 6-month period of time right before I switched to Tecfidera (however, from July of 1992 until October of 2013, I was relapse-free). I really wish Plegridy was an IM shot! Answer: My understanding is that Biogen elected to administer Plegridy subcutaneously based on market research suggesting that patients preferred subcutaneous injection. I personally disagree with this assessment. My experience has always been that patients prefer subcutaneous over intramuscular interferon shots only until they have experienced both forms of injection. With experience most patients learn that intramuscular injections are not as painful and do not create pain skin reactions as often. We are almost pre-programmed to think that a larger needle injected slightly deeper is more painful when this is not at all the case with interferons. Whether Plegridy is the best choice for you now is a different question altogether. If you had two relapses on interferon beta 1a (Avonex) within 6 months of starting tecfidera, why would pegylated interferon beta 1a produce a better response? They bind to the same receptor and have the same mechanism of action. There is certainly no evidence that Plegridy is superior to Avonex. If would seem to me that you and your physician should be considering a non interferon choice at this point in time. After all, there are a lot of treatment choices available today. Discuss this further with your MS specialist and good luck with whatever decisions you make together. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Here is My Question:
After visiting my GP he suggested to maybe think about using Avonex. My MS is inactive but he said this would slow things down as I have nerve pain and after activity things get worse. He said this medicine works before it gets bad or active. He was talking about injections once a week. Any advice on this? Answer: Avonex, similar to the other disease modifying therapies, have been shown to do 3 main things: 1) cut down on the frequency of MS relapses, 2) cut down the number of new lesions on the MRI scans, and 3) reduce the accumulation of disability in the short term (and likely long term). Based on your question, I have reservations about the use of Avonex (or any disease modifying therapy) to help your "nerve pain" that gets worse after activity. It sounds to me that you are experiencing the fluctuating symptoms of MS that occur due to old MS scars/damage. In that case, use of symptomatic (rather then disease modifying) therapies are in order. For MS to truly be "inactive", we look for no clinical relapses, new MRI activity, or accumulated disability over time. To answer this question, it requires the expert care of an MS specialist. I would encourage you to see one of these specialists to answer your question regarding a need to use Avonex (or similar therapy) versus symptomatic management. Here is a link to help you find an MS specialist/MS team in your area http://www.healthcarejourney.com/just-been-diagnosed-with-ms.html A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Question:
Hi again, I previously asked whether Aubagio was my next best option. Well, after 5 weeks and further symptoms that hasn't worked out for me either. So that's Copaxone, Rebif, Cytoxan, Tysabri, Rituxan, Plasmapheresis, monthly steroids, Copaxone again, Tecfidera & Aubagio I've tried thus far, none working for me as I continued to progress over the last 20yrs. If I were your patient, now considered Progressive-Relapsing, where would you suggest I go from here? A friend of mine is stable on Methotrexate-similarly disabled as me and has tried everything. I had marked progression on Rituxan & the 2 orals. I am in a scooter full time & as of the past year mostly unable to go anywhere but doctor's appointments. Any further progression & I will be unable to care for myself/live independently. Any advice is appreciated! (I see my MS Specialist neuro next week). Help!! Answer: I'm sorry to hear of your difficulties with the MS despite the various therapeutics you have tried. I think it is important to keep in mind that all of the disease modifying therapies (DMTs) are partially effective. Sometimes we get lucky and a patient's disease seems to go into a long-lasting remission after going on a DMT. When this happens, it may be that the DMT chosen is a near "perfect fit" for the individuals type of MS, or it was a coincidence and their MS was going to quiet down anyway. However, for many patients, we do expect to see some breakthrough disease activity, even on a good DMT. Therefore, reasonable expectations for the DMTs must be understood. I also think it is worth noting that the DMTs don't necessarily exert their full influence immediately, but can take some time (on the order of months). I would hesitate on labeling any DMT as a failure based on symptoms that started shortly after initiating the DMT. Lastly, the indication for a DMT (in my mind) is evidence of inflammatory disease activity (ie, confirmed MS relapse, new or enlarging lesions on the MRI, or contrast enhancing lesions). Unfortunately, there is no proven therapy for patients who have transitioned from the relapsing/inflammatory phase of the disease to the progressive phase. I do share your concern about progression and doing everything possible to retain as much of that as possible (with the end goal of retaining independent function). If your neurologist feels that you are still in the inflammatory phase of the disease (ie, you could still benefit from a DMT), then there is the new biologic (Lemtrada). Patients in the studies of Lemtrada who received this demonstrated an attenuated progression of disability compared to Avonex. This drug is not something to take lightly as it has a significant risk of autoimmune disorders associated with it. If your neurologist feels that you are no longer in the inflammatory phase of the disease, then a focus on rehabilitative medicine and occupation therapy to maximize functional independence is warranted (this can be used in addition to DMTs as well). I hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center My Question:
I know that Avonex and Plegridy are exactly the same drug and so they both have same side effects, but I am wondering if those effects last 1 day only as Avonex or do they last more? Thank you Answer: Plegridy is a re-engineered form of interferon beta 1a, the same molecule in both Avonex and Rebif, with a polyethylene glycol residue attached. This increases the effective mass or size of the molecule and decreases the clearance of the drug from your body. This has positive and negative effects; on the positive side you can take the drug less often and with more consistent and prolonged biological effects. There also seems to be less neutralizing antibody formation; on the negative side, side effects tend to be more prolonged and sometimes delayed in onset. I have had patients report flu like side effects lasting up to 4 days after injection, which can be managed by prolonging the use of ibuprofen or acetaminophen. This problem decreases over time, much like the flu like side effects decrease over time with Avonex. Titration of the dose over the first 4 weeks is also helpful. In my experience the injection site reactions are a little more problematic. These are often delayed in onset, beginning a day after injection, and then can worsen over several days. This requires icing and steroid creams until this improves over time. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego #Plegridy Here is My Question:
My question requires some background information. I am a 46 year old female diagnosed in 1999 when I was 31 years old. My 1st documented symptom happened in '94. I have tried the following treatments: Copaxone '99-'04, Rebif '04-'06, Cytoxan while on Rebif in '06, Tysabri '07-'08 straight onto Rituxan in '08-'10. Just after Rituxan I had 8 weeks of Plasmapheresis followed by 2 years of monthly IVIG & Steroids only '11-'13. All of these treatments were stopped due to antibodies and/or continual progression/ineffective response. In 2013 I decided to go back to Copaxone which I stayed on until an MRI showed active lesions in April '14 (my 1st mri to show 'active' lesions in all this time). I started Tecfidera in July '14 & had further progression which prompted me to stop it in Nov '14 just as Lemtrada became approved in the US. My neurologist advised a drug holiday while waiting for Lemtrada certification. With no idea when certification may come & 5 months of no treatment I decided to try Aubagio while waiting, which I am in my 3rd week of now. I am now considered Relapsing-Progressive, am in a scooter full time, cannot take a step, stand up straight or raise my arms above my head. Since Tecfidera I am losing the use of my right hand. I believe my EDSS is 8-8 1/2. I have two questions: 1. When Lemtrada does become available to me, having had no positive result from Chemo, Tysabri or Rituxan, is its mechanism of action likely to have an effect on my particular MS case? If so do I have any hope of it stopping my progression being at the stage that I am? 2. And if not Lemtrada is Aubagio the right DMD to try at this point. Thanks for your time! Answer: I'm sorry to hear of your experience with the various DMTs. As physicians, we try out best to match up an individual patient's form of MS to the "right" DMT. However, we do not have a biomarker (ie, a blood test) that can tell us exactly where the trouble is in the immune system (for a given patient) so we could more readily match that immune dysregulation to a DMT with a specific and complimentary mechanism of action. It really is a "trial and error" process. What's more, there is the possibility that an individual with MS may have a disease course that will not be stopped or significantly altered by any of our currently available DMTs. From what little I know about your case (and this opinion cannot substitute for the opinion of your specialist who knows you), you appear to have persistent inflammatory disease activity (particularly given the new MRI activity you mention). This signals to me that there is still a chance that a DMT could be helpful in your situation. Lemtrada is the newest DMT approved for use. It is very effective (when looking at the data from the pivotal clinical trials) in reducing inflammatory disease activity. However, it does come with a significant (potential) downside--autoimmunity. Specifically, there is a greater risk of developing a condition where your immune system could start attacking your platelets (causing serious bleeding), kidneys, and thyroid. These tend to be treatable conditions, but they are not insignificant. Whenever considering a DMT, you and your physician must weigh the pros/cons. We do not expect that our DMTs will reverse already accumulated disability, but they may mitigate further progression (at least in the short term... ie, a couple years). This is something that would need to be considered in your case. These are not easy decisions, and I think it comes down to what your goals are and the level of risk you are willing to assume. I hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center Question:
What does the term "wash out period" mean? My research indicates that it could mean lots of things like:
Answer: To "wash out” simply means to remove a substance (usually a drug) from the body either naturally or through an accelerated process. Many drugs hang around for quite some time after your last dose. For instance, Tysabri takes 3 months to “wash out” naturally and Aubagio can take many months. We can sped up the elimination of Tysabri by performing plasmaphoresis and we can sped up the elimination of Aubagio by giving an individual cholestyramine. However, the biological effects of a drug can persist long after the drug is eliminated from the body. Lemtrada is a great example. The effects of this drug persist for years after your infusions are complete even though no Lemtrada is detectable in your body 60 days after your infusions (elimination half life of 2 weeks). Hope this answers your question. Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego |
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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