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Here is My Question:
I've been on Tysabri approaching 2 years. First JCV test 18 months ago came out positive. Since improvement has been made in testing results, second test came out as .43 six months ago. Just received result of .32 from test one month ago. Should I be seriously considering an alternative , such as Tecfidera or Gilenya? Two year PML window closing soon. Answer: You have a very low index level but a positive JCV antibody result. Very few individuals have developed PML with an index value this low but there is still some uncertainty regarding the long term risk of treatment beyond 4-5 years in people with low index values. What you do about treatment depends on three things: 1. Your tolerance for a very low risk outcome like PML 2. Your disease severity and response to prior therapies 3. Your response to Tysabri for the past 2 years If you feel Tysabri has been good for you and your disease warrants this treatment, it is reasonable to continue on this treatment. There is increasing evidence that increasing the interval between treatments to 8 weeks instead of 4 weeks decreases the risk of PML. This is particularly true of people with low body mass index usually under 60-70 kg in weight. I would suggest discussing your options further with your MS specialist. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program #Tysabri #switchingDMTs Question:
MS has been a part of my life for 28 years. I have tried numerous medications - Copaxone, Gilenya, Tecfidera, Tysabri, Immuran, and, most recently, Plegridy. And had adverse reactions to each. Some more severe than others. I have RR MS, am still mobile and active but have noticed a little more progression of late with some symptoms. Is there a common denominator with MS drugs that may be the root of these reactions. I feel as if I am playing Russian Roulette not taking some medication, but feel the same way with each new nedication. Help! Thank you. Answer: I hope that by the time you finish reading my response to your question, you will realize that "Russian Roulette" is a very bad analogy for your predicament. While I do not know all the details of your case, I do know the natural history of MS and can provide a framework for your consideration. If you are a typical MS patient with relapsing MS for 28 years, you should be a woman somewhere between the age of 50 and 65. I will also assume that you have few other physical or mental problems for the purposes of my comments ,since additional health concerns can significantly affect your functional status. The median time from onset of MS (your first symptoms) to the development of secondary progressive MS is approximately 20 years in most modern natural history studies (Lyon France 1976-1997: British Columbia 1980-2003; and Lorraine France 1996-2003). This means that you are doing way better than the average MS patient if you have relapsing MS after 28 years. In the London Ontario natural history study, 80 % of patients with a relapsing onset were classified as progressive disease within 20 years of onset. Again this would indicate that you are doing very well indeed. Since the point at which a person develops progressive disease is often unclear, we often look to these natural history studies to tell us when people with MS tend to reach certain disability milestones. A common milestone for this purpose is the point at which a person requires at least a cane to walk and never improves again to walking without at least a cane. Now many people use canes for safety and reassurance, but for the purposes of this definition we are literally talking about people who can not walk the length of a football field without a cane. All of these natural history studies indicate that the median time to requiring a cane for walking ranges from 23 to 30 years after onset of MS symptoms. By this definition you are also doing very well. Now why is this information important to you in your decision about treatments? First, you already know you are doing considerably better that the average patient. You state you are still mobile and active. This indicates that your Expanded Disability Scale Score is probably no greater than 3.0. If this is the case you are doing better than at least 80 % of other people with MS and may never develop significant disability. If this is the case, you may never require disease modifying therapy. Why then are your symptoms worsening? Without knowing the details, I can not answer this question, but it is quite possible (based on the information provided and discussed above) that your increase in symptoms is NOT related to disease progression. The increase in symptoms could be related to other conditions (mental and physical), medications, deconditioning or simply the combination of normal aging on top of a brain already affected by MS. I suspect it is time to take a more holistic view of your overall condition and take a complementary approach to management that may or may not involve a disease modifying therapy. Discuss this with your MS specialist and feel free to share more of the details of your condition. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
My latest JCV came back positive at a level of 2.93 - I have been on Tysabri since the phase 3 trials (minus the year they took it off the market in 2005?) - I have done and am doing really well on Tysabri...my level has been around that for the last several blood draws...as I am doing so well - and am probably the healthiest I have ever been in my life - should I consider "Rituxan"? Doesn't it also carry a slightly lower risk of PML? Answer: This is an excellent question but difficult to answer. You have a number of options. First, your risk of PML if you remain on monthly treatment with Tysabri is approximately 1 in 100 or 1 %. You and your doctor know more than I do about the benefits you have received from Tysabri treatment for the past 9-10 years and your risk factors for MS disease progression, so the two of you need to decide if your treatment should be modified based on your overall assessment. There are several factors that may affect your decision. First, people with a low body mass index or weight accumulate more Tysabri over time and may be at increased risk of PML. This is particular true of people less than 60 kg. If you are relatively thin I would strongly consider increasing the interval between Tysabri infusions to every 8 weeks instead of every 4 weeks. There is accumulating evidence that this is beneficial in all JCV antibody positive (high titer) patients but particularly in those who are thin. I currently treat monthly for the first 18 treatments and then every 8 weeks in all MS patients with a JCV antibody index > 0.6. With few exceptions this interval works well but in some cases we need to infuse every 6 weeks to avoid a return of annoying MS symptoms. Another strategy would be to switch to another disease modifying therapy that you are likely to tolerate. This strategy can be beneficial, depending on your prior treatment experiences before starting Tysabri and your disease risk factors but is not without risk. Some people experience significant MS relapses after stopping Tysabri, even if another treatment is started immediately. Furthermore, some of the treatments you may consider could be associated with PML as well, including Gilenya, Tecfidera and Rituximab. The safest drugs to switch to would be the inteferons or Copaxone, but these may not be as well tolerated or as effective. Aubagio has not yet been associated with PML but this may just be due to too little experience. We do not recommend drugs on this site, but are simply providing you with information to discuss with your physician to make the best decision for you. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
Dr. Kinkel, Why is it that we can treat this disease with immunosuppressants which causes our kids to be susceptible to getting sick which in return can cause flare ups when they get sick? Answer: This is a great question. In fact we try to avoid immunosuppressants whenever possible. Most of the common first line disease modifying therapies (DMTs) are immunomodulators that alter specific inflammatory responses without globally suppressing the immune system. All the interferons and Copaxone are examples of immunomodulators; these DMTs do not increase the risk of infection and interferons may even decrease the risk common viral infections. Aubagio rarely increases the risk of infection since lymphocytes are able to use the "salvage pathway" to proliferate (reproduce). Other drugs like Tysabri and Gilenya have powerful but selective effects on the immune system and minimally increase the risk of common infections, although certain very rare infections (like PML) can have devastating consequences if not detected early. Both Tysabri and Gilenya can increase the risk of shingles as well. Shingles, as you know, is a reactivation of a dormant infection with varicella, the virus that causes Chickenpox. Tecfidera does have minimal suppressive effects on certain lymphocytes, particularly CD8 positive lymphocytes, and may increase the risk of infections if the lymphocyte count drops too low. This is the reason for monitoring lymphocyte counts in patients on Tecfidera. Rituximab selectively targets and destroys B lymphocytes expressing CD20 but this effect rarely lowers immunoglobulin levels or increases the risk of common infections. Certain DMTs used to treat MS clearly are immunosuppressive and significantly increase the risk of infection; these include alemtuzumab (Lemtrada), cyclophosphamide and chronic corticosteroids. Of all these treatments, it is rare for anyone to be treated with chronic corticosteroids these days as the risks outweigh the benefits in most circumstances. Generally, MS specialists recommend those treatments with the fewest suppressant effects on the immune system as first line therapies to avoid infections and only escalate treatment to those drugs that can significantly suppress the immune system when the potential benefits outweigh the risks. Revere (Rip) Kinkel MD Director of the UCSD Multiple Sclerosis Program Here is My Question:
i am a 39 year old woman, diagnosed with MS in 2005. I was on Avonex from Aug 07-Oct 10, Betaseron from Nov 10 to Dec 12 and since Jan 13 on Tysabri. I have completed 29 infusions of Tysabri. I am JCV +Ve with index of 0.49. My neurologist has suggested I switch to Tecfidera. What should I do? Answer: It is very hard to make an individual recommendation without knowing all the details of your case, but let me proceed with a my response based on several assumptions; first, I will assume that I would have placed you on Tysabri initially; second, I will assume that you have remained completely stable on Tysabri since starting treatment (assuming you have been on treatment continuously); third, I will assume you have never received any immunosuppressive treatments; and fourth, I will assume you tolerate Tysabri well with no particular complications or side effects. Based on these two assumptions, I would not be inclined to alter your treatment for the following reasons: 1. Your risk of PML (progressive multifocal leukoencephalopathy) with a JCV antibody index less than 0.9 is very rare (less than 1 in 3,000 patients treated with Tysabri for more than 2 years); In fact I do not think there has been a case of PML in a patient with consistent JCV antibody index levels below 0.6. This would suggest the risk may be less than 1 in 10,000 treated patients. 2. There is a known rare risk of PML with other treatments, including Tecfidera, so why alter treatment if Tysabri is currently working well. We do not recommend any medications on this site as we are not your physician and do not know the specific details of your case, but I hope answer helps you and your neurologist. I’m sure you will find him/her receptive to a discussion if you share this information. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Center #Tysabri #Tecfidera #MS #multiplesclerosis Here is My Question: Hi there, I wondered if anyone could tell me can I drink alcohol with Tecfidera and in between doses? I am going to a wedding tomorrow and would like to have something to drink at it. Answer: There should no problem with moderate alcohol consumption while taking Tecfidera. Alcohol does not interfere with the metabolism of Tecfidera and, unless you are experiencing gastrointestinal side effects from Tecfidera, moderate alcohol consumption should not create any new problems. People with MS often do not tolerate alcohol as well as they did prior to their diagnosis, so be careful you do not drink too much. It is more important to avoid or minimize alcohol consumption if you take any medications with a sedating effect on the central nervous system; these include narcotics or benzodiazepines (ativan, valium etc) among a long list of medications. Most of these medications can be easily recognized since the bottle or instructions will advise you against driving when under the influence of the medication. If you are receiving this response after the wedding, let me know if need any advice for a hangover :) Have fun. Revere Kinkel MD Director of the UCSD Multiple Sclerosis Program #Tecfidera #multiplesclerosis #MS Question:
After years of clear MRI's and good neurological exams, why should I keep taking the DMT? I have been through Copaxone, Avonex, Tysabri and now Tecfidera. Would it be unwise to take maybe a month, six months or a year off from everything and come back to treatment if things change? Answer: This is a good question, but not one that I cannot reasonably answer over a blog. (Mainly because I do not know your full story and I haven't had the opportunity to review your scans or examine you in person.) What I can do is speak on DMT-governing principles which you can take back to your physician for discussion. Some guiding principles in the use and prescribing of DMTs:
In your specific case, I have no way of knowing if you've met the criteria of "disease free" status. Cycling through different DMTs usually means that your physician has found something that suggests that your prior DMTs haven't been effective enough. I would suggest you speak with your physician about this. I hope this helps. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center #MS #diseasemodifyingtherapies #multiplesclerosis #DMTs Here is My Question:
For how long is it recommend to take taking 325mg aspirin with Tecfidera? Is there another alternative? Answer: An adult aspirin (325mg) is typically used to pre-treat the flushing symptoms associated with Tecfidera. There is not a standard guideline regarding the duration of pre-treatment, but it should be noted that flushing as it relates to Tecfidera tends to improve or resolve within the first month of initiating the medication. If you've been on Tecfidera and are not experiencing the flushing reaction, consider stopping the aspirin as it may no longer be needed. Since aspirin can help treat other serious conditions, you should first consult with your doctor. Another option is to take Tecfidera after a high protein and fat meal (think peanut butter) as this may also limit the flushing side effect. There is no evidence that an aspirin will help the other common side effect of Tecfidera: stomach and GI tract upset. However, taking the Tecfidera after a meal may help mitigate this temporary side effect as well. A. Scott Nielsen MD MMSc Virginia Mason Multiple Sclerosis Center 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 My Question:
What is the difference between Tysabri and Copaxone? Answer: Although there have been no head to head comparisons of Tysabri and Copaxone, a simple comparison of clinical trial results in relapsing MS patients suggests that Tysabri is far more effective than Copaxone as a treatment for MS. For instance in relapsing remitting MS patients, 1. Tysabri decreases relapse rates by 67 % whereas Copaxone decreases relapses by 29 % 2. Tysabri decreases disability progression by 42 % whereas Copaxone has not been demonstrated to decrease disability progression Tysabri is a monoclonal antibody that blocks an adhesion molecule required for immune cells to gain access to the brain; it is given once every 28 days by IV infusion. Copaxone is a subcutaneous injection self administered daily or three times a week. The exact mechanism of action is unknown, but it is believed that it may alter or modulate immune responses in people with MS. There are few if any long term risks of treatment with Copaxone although the injections often hurt and cause reactions under the skin. Long term treatment may result in loss of subcutaneous tissue at injections sites called lipoatrophy. Tysabri is associated with hypersensitivity reactions during the infusions in about 5 % of patients. These reactions almost always occur between the 2nd and 6th infusion. Rarely, patients can develop a severe brain infection called progressive multifocal leukoencephalopathy (PML) , most commonly after more than 2 years of therapy. The risk of PML is very low in patients who are JC virus antibody negative and have never received immunosuppressive treatment (see prior blogs on tysabri therapy) 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 taking Ditropan for bladder problems for several years until fairly recently at a dose of 5mg 1 to 2 times per day. Relapses in the past few months have meant that I now take 5mg 3 times per day, with limited positive results. However, I have very recently been told that Ditropan's effect is very limited if it is taken with food, and that it should be taken either 1 hour prior to, or 2 hours after food. The comment was also made that as a dry mouth is a common side effect, "if you don't have a dry mouth, it's probably not working very effectively." I am quite annoyed at not being told this, and have checked the drug information sheet provided by the pharmacy, which makes no mention of taking it on an empty stomach. Is this true? Also, I have found elsewhere that one of the contra-indications to taking this is having a hiatus hernia, which I have. This has never been discussed with me by my neurologist, gastroenterologist or general practitioner. So what should I do? Answer: It sounds like your MS has been active recently and has influenced the complex micturition reflex (you can read more about this reflex in Dr. Kinkel’s blog here: http://www.healthcarejourney.com/urinationbowel-problems.html). Ditropan treats overactive bladder (detrusor) function. However, there is more to the story than the detrusor for micturition. I’d suggest discussing this with your neurologist and a separate urological consultation may be needed to address the recent changes in your bladder function (ie, 1- to identify any other factors at play, and 2- develop a treatment strategy specific to your current bladder needs). Keep in mind that sometimes higher doses of Ditropan may be needed (up to 30mg/day)—although I do not recommend doing this on your own, but with the close observation of your treating physician (if it makes sense to do so in your specific situation). To answer your specific questions about Ditropan:
Hope this helps. -A. Scott Nielson, MD, MMSc, Virginia Mason Here is My Question:
I have been on Tysabri for 2 years (as of December) and I am JCV positive. My neurologist has told me that he recommends changing drugs in December. I have also been told that I have SPMS. My mobility and fatigue have declined in the last few years but I have no new lesions. What do you feel is the best drug to take now? Answer: Recommending an individual drug or treatment requires intimate knowledge of your personal characteristics as they pertain to your MS and this knowledge can only be gained, at a minimum, through the medical consultation process. At present we do not provide medical consultation. We can provide general information and broad recommendations that reflect our approach to decision making but the individual decision must be made by you in consultation with your MS specialist. Here is a blog about what to consider when selecting a disease modfying therapy you might want to read. CLICK HERE Revere (Rip) Kinkel MD Director of the Multiple Sclerosis Program Professor of Clinical Neurosciences University of California San Diego Clinical address: 200 West Arbor Dr Medical Offices North MC 8687 San Diego, CA 92103 619-543-3500 (phone)
Here Is My Question:
What is the status of anti-lingo, and will it be available as an FDA approved drug for MS by 2018? Answer: Two Phase II trials of anti-Lingo are currently enrolling patients; the results of these studies will determine if phase III trials are warranted. Since this is a therapy being developed for a new indication it is unlikely that it will be available by 2018. Rip Kinkel, MD Here is My Question:
Trying to decide on new medicine to take. Right now I believe I have narrowed it down to Tecfidera or Tysabri. My JCV came back as 0.23 positive. I am told that is considered on the low side. I used to take Avonex for about 3-4 years, but stopped about 18 months ago. My history is this: I have had about 2 relapses in 9 years since the original 'pain' after knee surgery in 2005 - pain on right side of face/head, left leg, some other 'minor' things possibly. I understand Tecfidera to be about 50% effective, and Tysabri to be 98% effective. My concern is how long you can you be on Tysabri? I looked at Dr. Kinkle's flowchart (SEE FLOWCHART), and it looks like people on Tysabri for 4+ years have much greater risk of developing PML. It was my understanding that a lot of people in my position, early diagnoses with good mobility etc., are starting to take Tysabri where as a few years ago it wasn't considered unless it was an extreme case. I am confused as to how to go about my decision on which is best for me in my current situation? Answer: You are asking the correct questions and beginning to think through this decision rationally, so let me give you a little help. While I still do not have enough information to provide the individual advice you are looking for, I can help refine the answers to some of the points you raise:
I hope this helps. -Rip Kinkel, MD Answer:
Tysabri is a humanized monoclonal antibody that binds to an adhesion molecule on immune cells and prevents the cells from gaining entry into the brain. Anti-Lingo-1 is a humanized monoclonal antibody developed by Biogen Idec that binds to Lingo-1, a molecule expressed on the surface of oligodendrocyte precursor cells (cells that make myelin) that prevents oligodendrocytes from remyelinating axons (it is negative regulator of myelination). In animal models Anti-Lingo-1 promotes remyelination and is being tested in phase II studies of MS patients. Although both drugs are monoclonal antibodies they have totally different effects on the body and nervous system. -Rip Kinkel, MD Here is My Question:
I have recently changed my medication from Copaxone 20 mg to 40 mg. I have 36 days worth of Copaxone 20 mg. I would like to give this to someone but not having luck yet. My doctors office said they wouldn't take it as it has to be refrigerated. Each one is sealed so fear of tampering should not be an issue. Answer: This is an excellent question; some MS specialists will take the left-over drug from patients to give to other patients in need, but I general advise against this practice, particularly with drugs that need to be refrigerated or kept out of the light. My institution also has a rule against this practice. You should never give any drugs to even a friend or family member since this is against the law. The bigger problem is getting rid of needles and syringes with or without unused drug. These should always be disposed of in a Sharps container (they have smaller sizes for travel purposes) and these are supplied by the manufacturer or distributor of the drug to your home. Contact your community waste/trash center to learn how you should get rid of the filled Sharps containers. Some clinics will allow you to drop off filled Sharps Containers to be disposed of with the rest of their medical waste. You should ask in advance if this is permissible. -Rip Kinkel, MD Here is My Question: Do birth control medications, preferably the Depo shot, interfere with MS medications? From the another side, does the effectiveness of MS medications decline when taken with a birth control medication? My teen aged daughter is having problems with her monthly cycles and the recommendation is to use birth control to regulate the cycles. Answer: Your question really has three parts, so let me answer each sequentially:
Please check with you doctor about the specific drugs you are currently taking and whether they interact in any way with hormonal contraceptives Rip Kinkel, MD |
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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