Here is My Question:
I am in my second week of taking Tecfidera. I have two questions:

1) Is it safe to take Excedrin, Tylenol or Advil?

2) Does Tecfidera cause weight gain?

Answers:
1) Yes 
2) No 

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

Here is My Question:
I'm a 35 year old female diagnosed 1 year ago with RRMS, but based on symptoms, we suspect I have had it for 15 to 20 years. I had surgery 2 months ago, and an exacerbation involving low blood pressure, neck spasms, and bladder retention. I stayed inpatient in the Step Down Unit for 4 days after what was supposed to be an outpatient procedure. My MS Specialist was informed and involved in all phases of care and did not seem too concerned about the incident. 

I had a consultation today with a different plastic surgeon about a breast augmentation with local anesthesia and/or twilight sedation. The surgeon refused to do the procedure, citing the adverse effects of lidocaine on MS. He said that the effects after the aforementioned surgery were most likely due to the large amounts of lidocaine and epinephrine injected into incision sites to control bleeding and help with pain management. He also said that with my history, I should never undergo any outpatient surgery procedure. I asked about the -caine injections for dental work, and he was leary about those as well; they could either cause permanent nerve damage or no pain relief/fast metabolizing of the numbing agent, thus causing severe pain during dental work. 

I have 21+ lesions on my brain, C2, T3, and T4 spinal cord lesions. 

I know that cosmetic surgery isn't contraindicated just because a patient has MS, but is there any merit to what this surgeon had advised? 

Thank you for your advice.

Answer:
Find a new surgeon/anesthetist.  This issue comes up more than you might got think.  The literature suggests an association between MS attacks and anesthesia; however, there is no established causal relationship.  I suspect that heat/temperature change that can occur with surgery and anesthesia may bring out "pseudo-attacks" of older symptoms from prior nervous system injury due to MS.

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

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:
Feeling better post Tysabri...? Until becoming JCV+ in May (1.8 on the index), I was on Tysabri for seven years (87 doses!). I was always fatigued, with the pre-infusion period worse. After about two months of Tysabri wash out, I've had a month of feeling more normal than I have in years. Absolutely and unequivocally less fatigued. And, definitely not just part of the normal ebb and flow of MS fatigue. I haven't been this "normal" for this long in years. Could the effect of Tysabri on my immune system have led to physical and mental fatigue? I'm out in a smaller area, so my neurologist has only had a few patients in this position. None with my experience. I'll be starting rituxan soon. Might I expect that the fatigue could return?

Answer:
It is certainly more common for people with MS to report lessened fatigue on Tysabri but a hand full will report worsening fatigue that improves after stopping the drug.

Glad you are feeling better.
​
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Question:
Is it possible to have MS with a negative spinal tap?

Answer:
It is certainly possible to have MS without spinal fluid evidence of intrathecal immunoglobulin production.

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

Question:
It is nearly impossible to avoid getting sick living with small children. What are the best methods to manage cold symptoms, such as congestion, runny nose, sore throat, and cough? Many homeopathic treatments include a warning against use by MS patients.

Answer:
You will need to be specific regarding which homeopathic remediy is causing you concern. For instance Echinachea, “stimulates the immune system” and many patients will take this as a homepathic remedy for colds. You would not want to take it all the time but it appears to be safe for short term use. In most cases it is the viral syndrome that worsens MS symptoms, not the remedy you take to alleviate the cold.

Please let us know if you have specific concerns about a homeopathic remedy.

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

Question:
Hello, My neurologist has been encouraging me to go on Tecfidera for a little while now, and I recently became willing to do so until my jc virus test came back positive with a score of 0.78. Now, I can't even get my neurologist to address this with me over the phone, so I am going to discuss the results with him at an appointment in a few days. He did relay to me, however, through his assistant, that he considers my score on the JC virus test low enough to not be a concern. But among the questions I have are the following:

1. Is there a consensus in the neurological community about what score indicates a substantial risk for PML with Tecfidera? I have read a rather detailed set of statistics for PML and Tysabri, but I have not been able to uncover the same data for Tecfidera.

2. Is there really a firm scientific basis for concluding that "there is no real risk" of PML associated with Tecfidera" (which I know is what many neurologists are likely to say.)

​I have read a couple of articles indicating that the actual number of cases of PML may be higher than the officially recognized number of 5 (or whatever it is currently). I have read many, many accounts from folks whose neurologists didn't even do ANY preliminary testing prior to the administration of Tecfidera of Tysabri, It is difficult for me to trust that in such cases the level of patient reporting and follow-up is necessarily reliable and/or consistent. All of which is compounded by the fact that PML symptoms mimic MS symptoms. I guess what I am getting at is that it is difficult for me to just trust that I am fine even given a positive JC virus test, given the relatively short track record of this particular drug, as well as some of the other factors that I mentioned. If anyone can present some evidence or insight into this issue it would be greatly appreciated. Thank you!

Answer:
The number of cases of PML in people taking Tecfidera is far too low to create a risk stratification based on JCV index or any other factors at present.  This is why no one currently recommends using the JCV index test to determine if a person should take Tecfidera. It is not a question of belief, it is a question of data.

Let me give you an example. We know that at least 50 % of adults are JCV antibody positive. Assume the overall risk of PML on Tecfidera is 1 in 25,000 (a conservative estimate). If only the JCV antibody positive patients are at risk for PML (which is 50 % of the people on tecfidera for this example) then the risk in these patients would still be only 1 in 12,500. Other factors could increase this risk, such as the development of a low lymphocyte count while taking Tecfidera, but the risk would still be very low and no where near the 1 in 100 risk of developing PML in JCV antibody positive people with prior chemotherapy treatment who receive Tysabri for more than 2 years.

Remember risk is always relative to what you are trying to prevent with a treatment. In many people with MS the risk of disability over any 5 year period is far higher than 1 in 100

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

Question:
Is it OK to have one or two alcoholic beverages while taking Aubagio?

Answer:
It depends; Do you mean twice a day, daily, weekly or once in a blue moon?  Over 10 drinks per week is too much for most people even without Aubagio.

I would discuss the safety of a few drinks while on Aubagio with your doctor; he or she is the only one who knows (if you told him or her) all your risk factors for liver disease and any other drugs that should not be mixed with alcohol.

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

Here is My Question:
I am 49 year old female diagnosed with MS in 2004 and according to my neurologist I'm now in the secondary progressive phase. I'm currently on Rituxin and biotin. Lately I started experiencing electric like shocks radiating from the tip of my right ring finger to my chest. My neurologist ordered 3 days of steroids and initially the zapping subsided but now it's been 5 days and shocks are back. Is there anything I should be tested for or is this my new normal? Thank you.

Answer:
Hopefully the “zapping” sensations are not your new normal and will subside over the next few weeks. These sensations are often effectively treated with Gabapentin, Pregabalin or carbamazepine
Ask your neurologist about these medications and good luck.

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

Here is My Question:
I was on Tysabri for about 11 months in 2012. My Neurologist sent me for a blood test. The result indicated I had been exposed to JCV. I was taken off Tysabri and started taking Tecfidera. I went off Tecfidera in May of 2017. At my July check-up, my Neurologist wanted me to start Tysabri infusions to replace Tecfidera. I went for a blood test that revealed my titer is 1.97. As a result, I will not be going back on Tysabri. Why would my titer spike? I am 64 years old female and 125 pounds.

Answer:
I’m not sure why you think your JCV antibody index, “spiked”. It sounds like your JCV antibody index was positive the first time your neurologist took you off of Tysabri and we would expect you to remain positive for life. The JCV antibody test, like most antibody tests, just tells us about prior exposure to viruses and bacteria.

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

200 West Arbor Dr
Medical Offices North MC 8687
San Diego, CA 92103

Here is My Question:
I am 27 and I have been on Gilenya for almost two years now and I had no relapses since then. Every thing seems relatively fine (except for some minor effects; hair loss, headaches) but my doctor suggested that I should switch to interferon as Gilenya might develop another disease (PML) as a side effect. I do not feel comfortable switching to any medicine other than Gilenya but I want to make sure that I'm making the right decision. Would you please help me decide by clarifying to me which medicine proved to be better (side effects and all) in treating MS. Thank you.

Answer:
Thank you for your question. The answer is relatively straightforward.

The risk of PML on Gilenya is extremely low or non existent. Almost all cases of PML reported in people on Gilenya occurred in JCV antibody positive people who were taking Tysabri and switched to Gilenya in an attempt to lower their risk of PML. Since most of these cases rapidly developed PML after starting Gilenya and we know that PML is asymptomatic for 6-9 months, it is generally agreed that most of these Gilenya treated patients already had pre-symptomatic PML from their time on Tysabri. Even assuming that Gilenya is rarely associated with the development of PML, this risk is exceedingly small and not a reason for stopping an effective therapy.

It is hard to recommend that anyone switch from Gilenya to an interferon unless they are experiencing intolerable side effects or perhaps planning to get pregnant. In either case (i.e. planning pregnancy or side effects) it would make more sense to switch to Copaxone or Glatopa than to an interferon.  I suspect your doctor did not recommend Tecfidera or Aubagio because he or she believes either treatment may be associated with PML. While this is true, the risk of PML with any of the oral therapies is very low (< 1 in 5,000 to < 1 in 10,000). This compares to a risk of 1 in 100 on tysabri if you are JCV antibody positive (high titer) and receive treatment for over 2 years.

The Transforms study showed that Gilenya decreased relapses and MRI activity much more than interferon. This was confirmed in a large, multi- country study using the MSBase registry. Therefore, you wouldn’t switch to interferon for disease activity either.

I hope this helps.

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

200 West Arbor Dr
Medical Offices North MC 8687
San Diego, CA 92103
619-543-3500 (Clinic phone)
619-543-5295 (Office phone)

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:
What area of the spinal cord affects toes?

Answer:
The toes can be affected by MS lesions anywhere in the spinal cord from the upper neck down to the conus medullaris, which is the lowest part of the sacral spinal cord. Think of the nervous system like an electrical circuit with all electrical impulses coming from or going to the brain; with this in mind it is easy to see how the arms can only be affected by problems in the cervical or upper part of the spinal cord, since all of the nerve impulses traveling from the arm (carrying sensation) or going to the arm (supplying impulses to muscles that move the arm and hand) enter or leave the cervical part of the spinal cord and do not travel through the thoracic, lumbar or sacral spinal cord.

On the other hand, sensation from the toes must travel through all segments of the spinal cord first entering the lower sacral spinal cord and traveling up to the brain by sequentially passing through the lumbar, thoracic and  cervical spinal cord in that order.

Hope that helps.

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

Here is My Question:
Should I be worried if I suddenly test positive after 39 infusions of Tysabri, with a high positive of 3.1 on JCV test? My neurologist stopped Tysabri and did MRI. No new enhancements. I did have a four month window when we moved, where do to insurance and set up, I was off infusions between the first 19 and last 20. 


Answer:
You are high titer JCV antibody positive and received Tysabri continuously for the past 20 months . You mentioned no enhancement on the MRI but we would not expect enhancement from either MS or PML shortly after stopping tysabri. Ask your neurologist if there were any new or enlarging T2/FLAIR lesions or new abnormalities on DWI trace images. The DWI trace images, which are routine now on most MRI protocols, are the best way to determine if there is any pre-symptomatic evidence of early PML.

I doubt you will have any problems since you did have a 4 month break from Tysabri and have only received 20 months of infusions since restarting tysabri. Most cases occur in people on Tysabri for over 24 months continuously. 

Your risk of PML becomes very low within 3 months of stopping Tysabri and almost non existent after 6 months. As always, consult with your physician.

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

Check out the latest patient blog by Danny van Leeuwen...READ MORE

​Here is My Question:
I've taken 39 infusions of Tysabri and just tested positive for JCV antibodies. My neurologist removed me from Tysabri and the MRI taken a few days later showed no signs of PML, am I still at risk for PML and if so, for how long do I have to worry?

Answer:
PML risk lasts at least 6 months after Tysabri discontinuation. The larger risk is regarding rebound MS disease activity (based on results of the RESTORE study). Transition to an appropriate therapy is important to minimize this risk (discussed elsewhere on this site).

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

Here is My Question:
There is so little research about whether Avonex or interferons make Scleroderma worse. Any thoughts on that or any new research being done? 

One more question...at what point, week wise if injection site reactions don't disappear with Plegridy do you go back to your doctor to discuss getting off this drug? Should all bruising, redness be gone by week 3,4, 5 or longer?

Answer:
Interferon-beta (IFB) has been associated with onset of systemic inflammatory conditions (most notably lupus) and should be avoided if previously diagnosed.  Lupus, RA, systemic sclerosis are diseases where over expressed genes happen to be IFN inducible genes which gives this association plausibility.

I was able to find references to ~11 or 12 cases of reported systemic sclerosis (with skin manifestations) on interferon-beta treatment for MS.  Although these numbers are rare, we live in an era of MS therapeutics where you have more options than IFN.  It may be worthwhile to speak to your neurologist about your circumstances and concerns and other options.

Injection site reactions can occur.  I'd suggest evaluating the injection technique with a nurse as a first step.

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

Here is My Question:
I just started Plegridy, completed my second injection. I am going in for major shoulder surgery soon and wanted to know if I should stop taking this before surgery and as well after surgery, since my body will be trying to heal and recover from surgery. I'm also concerned about my immune system being lowered from being on this drug and any infections that I can potentially pick up in a hospital setting. I am 65, also have bad reactions to medicine and site injection. 

Answer:
You do not need to stop Plegridy for your surgery. There is no evidence it lowers your immune response or inhibits healing. If you experience side effects with your injections wait 5-7 days after an injection for surgery. 

Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
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:
If I have a gastric bypass with MS will it make me worse.

Answer:
Surgical procedures are not known to make MS worse. After any gastric surgeries it is important to make sure you work with a nutritionist to ensure adequate nutrition and vitamins.

Benjamin M. Greenberg, MD, MHS, FAAN, FANA
Cain Denius Scholar in Mobility Disorders
Distinguished Teaching Professor
Vice Chair of Translational Research
Department of Neurology and Neurotherapeutics
Department of Pediatrics
​UT Southwestern Medical Center

Here is My Question:
Are there any recent findings on the testing of MD 1003? Is this or other high strength biotin available for purchase?

Answer:
There is a trial for high dose biotin underway. No results yet. There are some pharmacies that offer high dose biotin but use should be discussed with your 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
Dallas, Texas

Here is My Question:
My son was diagnosed with optic neuritis in March. At that time MY brain MRI had 1 lesion. My MRI in June showed 2 lesions. Then they did a spinal tap which was inconclusive but did show some rings. The doctor is trying to get Copaxone approved but insurance denied it and wants me to use Pregridy. My son just turned 21 so what is best for him?

There are no head to head studies comparing Plegridy to Copaxone.  I am not sure one drug is better than the other. Plegridy has the benefit of only requiring one injection every 14 days whereas Copaxone has to be injected three times per week. They are both effective medications for treating people who have had optic neuritis and early MS. 

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