Question:
I have been on Tecfidera for 2 years, and will be switching to Tysabri. I will be off Tecfidera for 1 month prior to the switch, which means I won't be on any medications for MS during that time. Will I have any reactions or withdrawals or will the body react in any ways from not being on any meds for 1 month?

Answer:
Both Tecfidera and Gilenya are medications that lower lymphocyte counts. In the case of Gilenya this is an almost universal effect, whereas Tecfidera lowers lymphocyte counts in less than 30 % of patients. The time course for recovery of lymphocyte counts is variable with Tecfidera, but occurs within a month of discontinuing Gilenya.  

Most of us are comfortable starting Tysabri or Rituximab once we know your lymphocyte count has returned to the normal range. This is the reason that many people wait a month before starting treatment in people recently stopping Gilenya or Tecfidera. However, if your lymphocyte count is normal I would start the Tysabri or rituximab immediately.  

I would also probably start treatment immediately if the reason for switching is continued and current disease activity. It is unlikely that you will experience any new problems by waiting a month before starting tysabri if your disease is not currently active.

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:
I live in New England and the weather has been so nice that I want to take advantage of the nice cool temps before summer to get as much exercise as possible but I'm constantly feeling fatigued. Anyone out there have some advice for fighting fatigue?

Answer:
This is a common question. Please see our symptom page on fatigue and also enter "fatigue" in the search box in the upper right corner of this page to read more about fatigue and MS.

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

​Here is My Question:
I am a 42 year old male who was diagnosed with MS in 2010. I have been on Tysabri for almost 3 years with no new disease activity and recently became JCV positive. I will be switching to Rituxan, but I have had to wait for my insurance to approve the preauthorization.

In the meantime my neurologist has spaced out my infusions to every 6 weeks. There have been recent studies that suggest a lower risk of PML when treatment is spread out, I guess. My last three infusions have been 6 weeks apart. I am now experiencing what feels like an exacerbation. I had MRIs of the brain and cervical spine done to rule-out PML and check for new lesions. They can't see any new disease activity.

My symptoms have been going on for almost two weeks and only getting worse. I have severe numbness and weakness in my arms and legs and banding in my torso. I am also getting cramping in my legs and my neurologist said in my exam that they are more rigid than before. I don't have an infection. Could this be an exacerbation without lesions? Could this be a result of stretching out my infusions? Could it be a pseudo-exacerbation? I have had many pseudo-exacerbations over the years from infections, heat, stress, etc and this doesn't feel like those.

Any insight is appreciated.

Answer:
This is probably a pseudo-exacerbation for a number of reasons:
1. You’ve been stable on Tysabri until now and it takes 2-3 months for the effects of an infusion to wear off enough to allow for a true relapse
2. The symptoms are coming from the spinal cord and mostly consist of positive sensory phenomenon and increased stiffness, both common with pseudo-relapses
3. PML doesn’t affect the spinal cord

Have your doctor check for a UTI or other signs of infection and if nothing present, treat with steroids. Even if there is evidence of an infection you may need steroids in addition to an antibiotic.

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:
I have not had any attacks or flares since my diagnosis, which was 4 yrs ago. I have a lot of symptoms such as neuropathy pain and the usual MS symptoms like feeling tired, headaches etc. I take Endep 100 mg a day and that helps me a lot for neuropathy pain and general functioning of everyday life. My question is, as i am struggling more and more with symptoms would it be best to be on a DMD? To prevent worsening and disabling symptoms? My walking is fine, although I get tired and tingling gets a bit worse.
Thank you in advance.

Answer:
Your question highlights the distinction between symptomatic and disease modifying therapies.  Endep is not a disease modifying therapy (will do nothing to alter the course of multiple sclerosis) but rather a symptomatic therapy that can help take the edge off of fluctuating symptoms of multiple sclerosis.  Disease modifying therapies help by 1) decreasing the frequency of new MS relapses or attacks, 2) decrease the number of new scars on the MRI scan compared with those who take no disease modifying therapy, and 3) mitigate disability progression over time.  As a general rule, I advocate for the use of disease modifying therapies to help prevent issues in the future and I use symptomatic therapies temporarily/intermittently to treat severe symptoms when they occur.

Please see my blog about the rationale for disease modifying therapies here:  http://www.healthcarejourney.com/physician-blog/a-commonly-asked-question-about-disease-modifying-therapies-for-multiple-sclerosis.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente

Here is My Question:
I have been taking Tecfidera for nearly 12 months now. I feel sleepy 24/7 and just not well. My white blood count has been low enough in tests taken over the last 4 months to have my GP wanting to know why. I'm thinking he might be missing a conection between that and Tecfidera. Am I right? Will I feel better if I stop taking it? Please help.

Answer:
Tecfidera does lead to leukopenia (lowering of white blood cell counts) by an average of 30%.  However, 7-10% of patients will experience severe leukopenia that would warrant coming off the medication as there have been cases of PML (progressive multifocal leukoencephalopathy) with this medication.  A decision to discontinue the Tecfidera must be discussed with your doctor. 

Fatigue is the most common and disabling feature of multiple sclerosis.  It may actually have nothing to do with Tecfidera.  There are ways to treat MS-related fatigue, but should be discussed with your doctor to know if it is safe (and makes sense) to do.

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
​#tecfidera #fatigue

Here is My Question:
Hello, I don’t mean to waste your time with this, but I am very confused with what I was told by a Chiropractor (that there is a cure or a way to reverse MS per the book that Dr. Terry Wahl’s.) It was like the Chiropractor was comparing cancer to MS. That is like comparing apples to oranges correct? Could you please assist me with my confusion and if I need to apologize to the Chiropractor or was I correct?

​​Answer:
We should not throw around the word, “Cure” casually. Very few things are cured in medicine; the exceptions generally apply to abnormal growths or foreign invaders that we kill with surgery (cut out) or drugs (antibiotics and chemotherapies). Most of the remaining diseases we manage.

I often ask people on antihypertensive medication if they have high blood pressure and when they say, “no", I ask them why they are taking an anti-hypertensive drug. They usually respond that they didn’t mention the high blood pressure because that was “taken care of” or “cured” by the drug. This is not true. The drug only helps to control the hypertension and only works if you take it correctly. Even then the drug may stop working or require higher doses later.

We have heard much about the potential benefits of dietary manipulation in MS. Some people with MS parse their words carefully and express their perception that an alteration in their diet makes them feel better regardless of the effects on their disease. They do not attempt to jump to conclusions regarding cause and effect. After all, any type of change sometimes impacts well being. A vocal minority jump to the conclusion that their improvement in well-being from the altered diet must mean they have altered their disease or even cured it. I wish this could be true, but it is doubtful that a single therapeutic approach will ever cure a disease like MS.

​As I often tell people with MS, there is no magic bullet or pill for what ails them. Some pills do help but a lot of health benefits and improvements require hard work on the part of the patient to alter their lifestyle and diet, exercise, control negative thoughts, constantly strive to learn and communicate better with their fellow man.
​
When you view anecdotal information on the web or in popular books and media about the health benefits of a diet or supplement, you really need to ask yourself the following questions. Think of Teri Wahl’s book as an example:

• Who is providing this information? Merely being a doctor provides no particular expertise about one’s illness. I can assure you of this by my own personal experience with my own health
• If the information is anecdotal, especially someone relaying their personal experience, it is exceedingly important that certain parameter’s are met before you even consider the information.
  1. First, you need independent confirmation that you are dealing with a “case”, in the parlance of clinical research. In this situation you need independent confirmation from an MS expert that the person actually has MS. Believe it or not there are many people who strongly believe they have MS but there is either no evidence to support this belief or, more commonly, little evidence to support their perceived MS severity.
  2. Second, you need independent confirmation from an MS expert that a deteriorating state in their condition was followed by a sustained improvement in their condition after a therapeutic manipulation (e.g. diet change).
  3. Third, you need to know that this sustained improvement was entirely unexpected. This is almost impossible to know with MS since spontaneously improvements are so common.
  4. Fourth, there needs to be a reasonable hypothesis for this potential cause and effect.
  5. Fifth, the cause and effect must be confirmed in a least one controlled studies. 

Consider these thoughts whenever you approach scientific claims in any format. I am not stating that all claims must be held to the same scientific rigor required by the food and drug administration for approval of therapeutics, but these minimal requirements must be met before you can claim a definite health benefit, to say nothing of a”cure”, from any health manipulation. This being said, if you find something that makes you feel better and it is not harmful (physically, mentally or economically) stick with it. Just don’t let unsupported claims guide your entire approach to your disease.

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

Here is My Question:
I am preparing to start Gilenya as my JCV is positive, value is 2.68, WBC WNL. I am currently taking Tecfidera but have new white spots and past ones are larger. Recently I have had cognitive/ memory changes. Thankfully physically I'm am well. Should I be concerned with switching to Gilenya?

Answer:
Disease modifying therapies such as Tecfidera and Gilenya are supposed to, among other things, reduce the frequency of new lesions on the MRI scan.  It appears that Tecfidera wasn't doing that in your specific case.  Tecfidera and Gilenya work by completely different mechanisms, so if one doesn't work, the other might do a better job of controlling the inflammatory phase of multiple sclerosis.

Both Tecfidera and Gilenya are associated with PML (the infectious condition caused by the JC virus--which you are positive for).  This is certainly a consideration that you must weigh when considering starting a medication such as these.  With Gilenya, there are other off-target effects that also should be considered when weighing the "pros/cons and risks/benefits".  Gilenya can affect the pacemaker of the heart (requiring you to be monitored in the clinic or hospital for at least 6 hours, can affect the back of the eye leading to blurred vision, increase the risk of certain skin cancers, and affect the lungs, among other issues.)  So, the upfront legwork to start gilenya is a little laborious, but once on and tolerating, could be a very good option for your multiple sclerosis.

On this website are blogs about these issues as well as the symptoms of cognition that I would encourage you to read. 

A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente