Here is My Question:
I have been on Copaxone for 18 years, since my initial diagnosis. I have had no exacerbations but have managed the weakness and balance problems that were present with the initial exacerbation. I am considering a change to Tecfidera, only because I am tired of injections and have read that the newer therapies are more effective. However, I am a bit frightened with what I read regarding JC Virus. Am I silly to be thinking of a change when I have had no exacerbations? thanks!


Answer:
The decision to change therapy is a very personal one. There is no right or wrong answer. After having such a long period of remission on any medication it would be reasonable to have hesitation about switching. There is risk to all medications and there are risks to Tecfidera, so those risks have to be weighed against the inconvenience and pain associated with injections. A careful conversation with your treating physician is critical and a plan to monitor for any disease activation after switching is warranted.
 
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
Dallas, Texas

Here is My Question:
My daughter is newly diagnosed. Her only symptom was eye sight. Since her brain MRI showed many lesions (some large) one doctor said she should take Tysabri or Copaxone with steroids. A second opinion said Tysabri and no to Copaxone. She is JC negative. I have been reading about rebound coming off Tysabri so that scares me. Her spinal MRI was clear but had bands in CSF. How do we make this decision for the long term outlook? Right now she has no symptoms so this is hard to understand. Tysabri is a very safe medication to be on if you are JC antibody negative and remain JC antibody negative while on therapy.

Answer:
The risk of rebound is only a problem if you are not switched to another medication in a timely fashion after discontinuing the Tysabri.

Most rebound symptoms occur around 3 months after the last infusion. Hopefully your daughter will not have a need to discontinue the Tysabri.  However, if she does need to stop it, there are many treatment options that can be started within 1 month of discontinuing the Tysabri to avoid the risk of rebound.
 
Benjamin Osborne, MD
Associate Professor of Neurology and Ophthalmology
Director, Neuromyelitis Optica (NMO) Clinic
Director, Neuro-Ophthalmology Clinic
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital
3800 Reservoir Road, NW 7PHC
Washington, DC 20007

Here is My Question:
I was diagnosed with RRMS 2003 at age 50 (most likely had first attack at 37). I tried Avonex, but discontinued due to side effects. I had difficulty with insurance so hd no treatment for several years with stable brain MRI. Because of severe fatigue I started on Tysabri in 2009 and did extremely well on it (brain MRI stable).

Spring 2014 JC indeterm/neg then fall 2014 indeterm/pos. No index done on positive sample, lab couldn't find one (this is my life!). Since I was worried about PML, I stopped Tysabri in Sept 2014 after a total of 52 treatments (spaced them out towards the end). One neuro told me to stay on Tysabri, not to take Tecfidera because it affects CD8 cells and those are the cells that may prevent PML.

I was worried about PML so I started Copaxone after a 3 month delay due to insurance and pharmacy issues. Brain MRI stable with one C-spine lesion prior to starting Copaxone. 2015 JC neg/index 0.18. In July this year I started having much worse fatigue, paresthesias, and bladder issues and thought it was due to the relentless heat so I saw my neurologist. Brain MRI unchanged but Cspine shows previous lesion no longer present but two new lesions C4-5 and C7-T1 (two years between Cspine MRI's so don't know when they developed). So Copaxone isn't working. Currently have a JC pending. LFT's very slightly elevated (AST 44, ALT 64). Resting HR 48-50 so don't want cardiac side effects. 

What would you consider my options for therapy at this point? 

I have read all of the questions about JC index and Tysabri. One post stated that when restarting Tysabri the risk of PML is low for the first 24 months. Is that true regardless of JC being pos or neg? Is it true about Tecfidera and CD8 cells? What is the risk of PML on Tecfidera? Do you think there will be more cases of PML with Tecfidera as patients are on it for longer periods? 

Thank you for your help and for providing this site. It has been a wonderful resource!

Answer:
You have some good questions. Since I know very little about your MS other than your current age (approximately 63) and your disease duration (approximately 25 years), I will assume you have very little disability (you really only mention fatigue, sensory symptoms and “bladder issues”) and disease activity has been low (several new lesions in the spine with most repeat MRIs reported as stable even when not on treatment for long intervals). I suspect you have lots of options. Obviously, you need to discuss these options with your neurologist. These include:

1. Tecfidera; there is a very low if not inconsequential risk of PML as long as you monitor lymphocyte counts and stop the drug with any persistent 2-3 months) lowering below 600
2. Tysabri; your JCV index is low positive and you’ve been off long enough to reset the clock so to speak. Remember that being older and thinner are both additional risk factors for PML and if your disease activity is really low, this is not a great choice for greater than 18 months
3. Aubagio; it is well tolerated, effective and the liver enzyme elevations and hair thinning are definitely over emphasized. I suspect this is one of reasons it is used so widely in Europe and Canada.

I generally avoid Gilenya in people of our age. To many potentially silent cardiac issues and there is the risk of shingles.

Good luck

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Director of Hillcrest Neurology
Professor of Clinical Neurosciences
University of California San Diego

Here is My Question:
So I have been somewhat diagnosed with MS (not sure how severe as of yet) there are lesions noticeable however I have had to lumbar punctures and the fluid has come back negative. The Dr. has started me on Copaxone (Glatopa) 20 mg. Just wondering if there is any reason I shouldn't drink alcohol?

Chris 

Answer:
There is no problem with drinking alcohol in moderation.

As for starting Glatopa, what is the goal of this treatment? This may seem like a silly question, but if your doctor is not even sure of the diagnosis why is it being prescribed? Were you given the option of monitoring your condition with regular MR imaging to determine: a) Do you have MS?;  b) How active is your MS?; and c) Does it require treatment?

While I do not know the details of your case, these are the questions that all patients must ask before initiating treatment since day to day symptoms are not likely to abate on treatment with Glatopa.

Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego

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 narrowed it down to Tecfidera and Copaxone and would appreciate a clinical and real life comparison of the two. My concern with Tecfidera is long term effects, since the long term effects of Copaxone are apparent due to its longevity on the market. So Copaxone or Tecfidera and why?

Answer:
This is a really good question but I doubt my answer will be of value to you. I can provide comparisons of the two drugs but advising an individual patient on a particular drug requires knowledge of that individual’s disease characteristics.

So what are the comparisons between Copaxone and Tecfidera? It just so happens that one of the clinical trials of Tecfidera used Copaxone as an unblinded comparison arm so we have some information available to compare these two therapies.  The clinical trials results over two years for each of drugs compared to a group receiving placebo was as follows:

1. Tecfidera reduced relapses by 44%, whereas Copaxone decreased relapses by 29%
2. Tecfidera reduced the development of disability by 21%, whereas Copaxone decreased disability by 7% (neither were statistically significant)
3. Tecfidera decreased the development of new white spots on MRI by 71 %,  whereas Copaxone decrease new white spots by 54%
4. 12% of patients on Tecfidera stopped taking the drug because of side effects, whereas 10% of Copaxone treated patients stopped Copaxone because of side effects.
   

Rip Kinkel

Here is My Question:
I was diagnosed with MS 14 years ago. I have taken disease modifying drugs but after a bad experience 5 years ago I have not been on any MS medications and instead eat healthy (nothing processed, just lean meat, fruits, veggies...) and exercise about 5 times a week, including weight lifting and cardio. This appears to be as good as the results of a MS modifying drug. So why should I go back on medicine?

Answer:
This is a great question. People with MS take Disease modifying therapies (DMTs) to reduce their risk of relapses and their risk of the disease spreading throughout the central nervous system as detected by standard MR imaging. Reducing these risks has resulted in modest short term reductions in the risk of residual neurological abnormalities on examination after 2 years of therapy. It is hoped but difficult to prove that these short term (2 year) benefits of DMT result in less disability after many years of treatment (perhaps more than 10 years of treatment).

Does this mean that DMTs are meant for everyone? The answer is no or at least, we don’t know for sure. First, clinical trials include only patients meeting certain entry criteria. These clinical trial participants tend to be younger, earlier in the course of the disease and have less disability than most patients seen in MS clinics. They also have fewer medical problems that can interfere with treatment.

For instance, the average duration of disease in most MS clinical trials is between 5 and 7 years and the average patient has a minimal or no disability (all clinical trials actually exclude patients unable to walk at least the length of a football field). You report having MS for 14 years which already places you in a outlier group. Other information is not provided. So whether you should or should not be on disease modifying therapy depends on your circumstances and disease characteristics.

Now here is a very important point for you to consider: while it is good that you have remained stable for 5 years off of disease modifying therapy this doesn’t mean much in the context of a disease that often takes 30-40 years to create problems for people. Patients often remain stable for intervals of 2-5 years and eventually develop problems from their MS. The real question should be, “what are my risk factors for disease progression and has there been any evidence of recurrent disease during my 5 years off of therapy?” Only a MS specialist with more information would be able to answer these questions for you. Remember the disease can be very active without any changes in your symptoms, at least for several years. If you haven’t checked in with an MS specialist in several years, I would recommend considering this in the future.

By the way the things you are doing for your MS (diet, exercise and life style adjustments) are great and are likely responsible for you feeling as good as you do; keep it up and don’t let anyone tell your otherwise. But stating that the results of these activities are as good as taking DMTs is a false comparison and implies that one is a substitution for the other. Both are usually required for most patients to achieve long term beneficial outcomes.

Rip Kinkel, MD

Here is my question:
What is the treatment for MS?

Answer:
It sounds as though you may be relatively new to MS. The management or treatment of MS can broken up into 6 interrelated categories:

1. Education: What you don’t know can hurt you and what you learn can help you tremendously; this site will help you learn and hopefully achieve better outcomes.
   
2. Secondary Prevention: We do not mean preventing MS, although this may be a goal in first degree relatives (siblings and children).  Prevention in this sense means avoiding complications and eliminating habits that can make MS worsen more rapidly. Prevention must include cessation of smoking (if you smoke), attaining ideal body weight through dietary adjustments, regular aerobic exercise and strength training and remaining physically, mentally and socially engaged and challenged in life.
3. Enhancing recovery from relapses: The standard therapy is corticosteroids and less commonly plasmaphoresis or IV immunoglobulin. Rehabilitation is also an important component.
4. Rehabilitation: This refers to strategies designed to enhance recovery of function and allow you to maintain activities that are meaningful to you.
5. Symptomatic therapy: Many patients have persistent and annoying symptoms that may interfere with life’s activities. Since disease modifying therapies only prevent new symptoms from emerging (if they work correctly) these persistent symptoms must be managed differently. For instance, heat intolerance may be treated with cooling vests, collars or hats; a foot drop may be treated with a brace or an functional electrical stimulation device such as a WalkAide or Bioness device, burning or stabbing pains may be treated with drugs like gabapentin or Lyrica, spasms may be treated with baclofen and urinary urgency with oxybutynin to name just some examples. 
6. Disease modifying therapy: This refers to a group of medications ( interferons (Avonex, Betaseron, Extavia, Rebif), Copaxone, Tysabri, Gilenya, Aubagio and Tecfidera) that are approved by the FDA to reduce the risk of disease relapses and hopefully prevent the disease from worsening over time. Other available treatments may have disease modifying effects but are not specifically approved by the FDA; these include Vitamin D3 supplementation and statins. Many more therapies are still in clinical trials or awaiting approval by the FDA.
   

These categories or steps are not meant to be achieved sequentially although certain steps will come before others. Instead, they are meant to work together to help you achieve the best outcomes possible. They will also change over time so be prepared to continue learning.

It may help you to start by reading two blogs that I wrote in the past for this website The first is called, "Platform therapy for MS" and the second is called "How do you decide on disease modifying therapy".  Both can be found on the treatment page for this website CLICK HERE

Good luck and keep asking questions.
 
Rip Kinkel