Here is My Question:
What is the likelihood of MS diagnosis not being debilitating?

Answer:
That is a very difficult question to answer for two reasons:

1. Most of the MS natural history data available applies only to the era of no treatments or only partially effective treatments
2. The definition of debilitating is itself variable. For instance, we all know patients who are wheelchair bound who continue to be active at home and still work in cognitive demanding jobs. Are they debilitating? 
3. 
   

We tend to talk about probability of reaching certain levels of disability at different time points

For Relapsing MS patients with symptom onset in the early 1990s ( the era when treatments for MS first became approved) the median time between onset of MS symptoms and requiring a cane to walk is approximately 25 to 30 years. This means that exactly half the patients will need a cane within 25 to 30 year and the other half will not need a cane. The median time to develop this level of disability is shorter in men by about 5 years.
For progressive onset patients the median time between onset of MS symptoms and requiring a cane to walk is much shorter (< 10 years)

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
If I postpone certain medications due to COVID 19, does this increase my risks to new/worsening nerve damage?

Answer:
Temporarily stopping certain disease modifying therapies can increase your risk of new or worsening injury to your nervous system from MS. This is well characterized for two particular MS Disease Modifying Therapies, Gilenya and Tysabri.  The package insert for both products even warns physicians about the risk of stopping treatment, temporarily or permanently, without substituting another suitable DMT.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
If/when there is a cure/vaccine for COVID-19, can I take it given the medical treatment for MS? Or will I not be able to get the vaccine and; therefore, always be susceptible to COVID-19?

Answer:
Most vaccines are available to all people including people with MS. In fact we typically encourage people with MS to keep current on their vaccinations. The exception is live or live attentuated vaccines, which are avoided in immunosuppressed individuals. We do not at present anticipate a live or live attentuated type of vaccine for COVID-19. Therefore, the COVID-19 vaccine would be recommended for people with MS, unless something unusual is discovered during the clinical development trials.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
How often is MS confused with Parkinson’s, ALS, or other progressive diseases?

Answer:
Today, because of the availability of MR imaging, evoked potentials and spinal fluid analysis, it is very rare for MS to be confused with other neurodegenerative conditions. Confusion can arise early in the onset of symptoms but it usually becomes very apparent to the physician within months (at times several years) that they are not dealing with MS. It is important to realize that most neurodegenerative conditions, like ALS and Parkinson's disease, are only confused with primary progressive MS. They would never be confused with typical relapsing remitting MS.

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
Do you have a virtual physical therapy?

Answer:
Yes, we work with the Adapt Functional Movement Center in Carlsbad, California who provides a host of virtual therapy options. For 1-on-1 sessions, their team uses a practice called Functional Movement Therapy, which is specifically designed to maintain nervous system activity in order to preserve and strengthen function. The team at Adapt uses the neurodevelopmental sequence in their Functional Movement Therapy, which is the normal movement progression that infants follow as they grow and develop the abilities to roll, crawl, stand, and walk. That same sequence provides direction in the rehabilitation field by giving the team a logical series of postures and movement strategies to follow in order to re-educate the nervous system. Adapt works heavily with MS patients as well as a host of other neurological and neurodegenerative conditions and offers programs onsite at their center in California, as well as virtually over Zoom. They also conduct a series of live classes and activities on a weekly basis which are free for members of the organization. You can get more information at www.adaptmovement.org

The HealthCare Journey Team

Dear Health Care Journey Readers

As we begin to gradually open up society and venture out once again to areas where we can get exposed to COVID 19, it is important to understand the relative risks for exposure in different environmental situations and make sure that we minimize these risks. Several days ago I read the enclosed Blog post by Erin Bromage, PhD, an immunologist specializing in infectious diseases and vaccines at the University of  Massachusetts.  Dr Bromage does such a fantastic job of reviewing this topic that I thought I should share this with you. Please pass this along to friends, colleagues and family members. 

​Stay safe

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
With COVID-19, I completed my Ocrevus treatment April 2019, I haven't gotten a boost since then. Is it safe to travel? Safe to get on a plane?

Answer:
The answer to this question depends on your risk factors, where you plan to travel and what you plan to do once you arrive at your location?

The main risk factors for serious COVID 19 infections, including death, include age over 60 (especially males), hypertension, diabetes, obesity, vascular disease and significant disability. If you have any of these risk factors you should still be in quarantine at home. If you do not have significant risk factors, I would consider travel only if absolutely necessary and take precautions.

We do not at present know if ocrelizumab increases the risk of more severe COVID-19 infections.  If your naive B cells have returned, which is usually the case  6 to 12 months after an ocrevus infusion cycle, you will theoretically be able to develop a humoral immune response against a novel pathogen like COVID-19.

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

Question: What is the risk of returning to work in a major hospital after receiving anti-CD20 therapy?

Answer:
We do not have much information to guide us at present but here is what we know:

1. Genentech has reported preliminary information on 100 confirmed or suspected cases of COVID-19 infection in patients receiving Ocrelizumab, another anti-CD20 monoclonal antibody expected to have identical effects on the immune system as Rituximab. Twenty-six  patients were hospitalized and 5 were listed in critical condition. We have no idea if these patients had other risk factors for severe COVID-19 infection (i.e. age over 60, male sex, vascular disease, hypertension, diabetes, obesity or significant physical disability) or how long they had been receiving Ocrelizumab. Presumably, the risk of immunosuppression is greater after long term treatment compared to one infusion cycle.

Generally, I recommend that patients with MS on Ocrevus who work in healthcare get transferred to duties with decreased patient interaction, if they are young and have no other risk factors for severe COVID-19 infection. If  a person has multiple known risk factors in addition to receiving treatment with COVID 19, I recommend a leave of absence from work until there is a steady decline in cases to the health facility for over 2 weeks and then allow a return to work initially to  duties with decreased patient interaction.

In all cases workers should follow social distancing rules with adequate PPE and frequent cleaning of hands and equipment.

I hope this helps
​
Revere P (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've been on Tysabri for 7 years. Every 4 weeks I get an infusion. Now my neurologist has put me on 6 weekly infusions which is not my choice. I've never felt this way in 7 years...I feel light headed, sick, tired and I've no motivation. Help!

Answer:
There are many potential reasons for feeling, "lightheaded, sick and tired" , that have nothing to do with extending the interval between infusions to every 6 weeks. Talk to your doctor to see if he or she can provide an answer. Most current evidence suggests that people receiving tysabri every 6 weeks do just as well as those receiving every 4 week tysabri. There is a clinical trial underwent to make sure there is no difference in outcomes between patients randomly assigned to continue on every 4 week tysabri or increase the interval between infusions to every 6 weeks, but the results are not available at present.
​
If you are JCV antibody negative, you could simply ask your neurologist if it is okay to return to every 4 week infusions, if you and your doctor are convinced your problems are related to the change in schedule.

Good luck

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

Due to COVID-19 we are cancelling the MS Expo that had been scheduled for June 6th. We apologize for any inconvenience. However, we are making some exciting plans for future events so please stay tuned! Have a very happy and healthy Memorial Day weekend!

Best,
​The HeathCare Journey Team

Here is My Question:
I have constant stomach and bowel issues & I can’t seem to get any answers if this is MS related & what to do if it is. I am 62 years old & was officially diagnosed with MS in early 2018 although I have had symptoms for years prior to being diagnosed. Thanks.

Answer:
Stomach and bowel "issues"  could refer to many things. Your doctor will need to determine the following:

1. Is your problem separate from your MS? Conditions such as irritable bowel syndrome are common and not related to MS. This is something for a primary care doctor or gastroenterologist to determine
2. Is your problem related to medication your take or your diet? Again this something for a primary care doctor or gastroenterologist to determine
3. Is your problem related to another condition that can mimic MS? one example would be Celiac disease
4. Is your problem related to MS? This is usually discovered during your evaluation for 1 to 3

Revere P (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:
Is nerve damage causing numbness in my feet to turn into pain? Last year, I had a lesion on my spine that caused numbness from the waist down. After steroid treatment it gradually subsided and I am able to walk safely again. However, my feet feel mildy numb when I first get up. It subsides but gets much worse when I walk for more than 45 minutes at a time. If I am at work, where I am standing all day, the numbness becomes very painful. Usually 4 or 5 hours into my shift it starts to hurt. Some days I can't make it until the end of my shift. It feels like my feet are being crushed by a steamroller! I usually sit in the break room for at least an hour before I feel like I can make it to my car. Would it make sense to assume the pain is the result of pushing too much, past the numbness?

Answer:
You are describing neuropathic pain which can be caused by nerve damage (possibly from the spinal cord or peripheral nerves running to your feet in your case). I'd recommend you speak with your neurologist about your symptoms to help determine the cause but also potential treatment to help take the edge off your neuropathic pain so you can function better at work.  

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

Here is My Question:
I just started taking Tecfidera today. I took it around 11 am, and made sure to eat healthy fats with it (my doctor recommended this). I was fine up until 3:30-3:45, and then the flushing kicked in. I was wondering if eating certain foods may cause flushing? I know this is a side effect of the medication, but I ate some spicy chili at 3, and then the flushing started. I was fine all day up until then. Other than that I've had no other side effects (cross my fingers).

Answer:
Flushing is a common side effect of Tecfidera. Clinical trials 36% of people taking dimethyl fumarate reported experiencing flushing and 42% reported gastrointestinal (GI) upset such as nausea, vomiting, abdominal pain or diarrhea. These side effects tend to occur in the first month or so of treatment before easing off, however they can be troublesome to deal with and it is known that experiencing these symptoms can affect how many people stay using treatment. If side effects such flushing or GI upset can be effectively managed then it is likely more people will continue dimethyl fumarate treatment and benefit from its disease modifying effects.The suggested strategies to reduce the impact and severity of flushing and GI upset include:

• taking dimethyl fumarate with food
• temporarily reducing the dose, returning to full dose within four weeks
• taking aspirin before the dimethyl fumarate dose to reduce flushing
• using loperamide to manage diarrhea
• using metoclopramide or domperidone to manage very severe nausea or vomiting
• using H2-receptor antagonists and proton pump inhibitors to help reduce abdominal pain.​

Augusto Miravalle, MD FAAN
Clinical Associate Professor of Neurology
Liaison for Neurology, Fort Collins Branch
University of Colorado Denver School of Medicine

Here is My Question:
Now that places are opening up, in Florida restaurants can open at 25%, is it safe for my 80 yr old husband, in a wheelchair with MS to go to dinner?

Answer:
In New York City, where we have the best data currently on COVID-19 outcomes, the mortality rate in people over age 75 is very high compared to other age groups. In fact mortality rates start to increase every decade after age 40

For instance, the chance that a person over the age of 75 will die from a COVID 19 infection is 75 fold higher than the chance of death for a person under the age of 45 and 8 fold higher than the chance of death for a person between the age of 45 and 64.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
I am 55 years old and was diagnosed with multiple sclerosis 5 years ago. My first symptoms started more than 15 years ago but I was not diagnosed with the disease at the time. After my diagnosis I was put on Tecfidera and have been on the medication since then. It has done a good job controlling my disease. I have had no side effects while on the medication.

I had a recent worsening of symptoms that improved within 4 days. I had an MRI scan done and there were minimum new changes that do not explain my complaint. My doctor thinks that it might have been a pseudo relapse, or that I could be transitioning into the secondary progressive form given the length of my disease activity (more than 15 years now).

Here are my questions:

1. Do I remain on Tecfidera? I have done so well on the medication so far.
2. If I get off Tecfidera do I have to have a wash period of 4 weeks before starting another medication?
3. Do I switch to Mayzent since it is said to help SPMS? My doctor is leaning towards Mayzent. But I worry about its side effects especially since I get frequent migraines and then there is the risk of rebound if I get off it.
4. Would Ocrevus be a better option for me? Has an increased risk for breast cancer been observed in patients on the medication?

Your input is greatly appreciated. Thank you.

Answer:

Thank you for your question and providing the great amount of detail about your case

To summarize:

• Onset of your MS was probably late 30's but symptoms too minor or non specific to diagnose MS for 15 years.
  
• Diagnosis of MS at age 50 and started Tecfidera.
  
• Tecfidera well tolerated and effective until recent transient worsening of symptoms for 4 days with return to baseline level of function.
  
• Repeat MRI done with report of questionable new findings 

The easy answer is just to stay on the Tecfidera and monitor more frequently by Quantitative Clinical Performance Evaluations and another MRI in 6 months. Going forward I encourage you and everyone reading this post to thoroughly consider your goals or treatment and decide ahead of time what it would take for you to consider changing that treatment.

To answer your other questions
2. There is no particular reason for a wash out period if your lab values, specifically your absolute lymphocyte count is above the lower limit of normal range
3. I have heard nothing in your report to suggest you have SPMS. 
4. Ocrevus is a great drug. We have no evidence from your experience that either Mayzent or Ocrevus would be a better drug for you than the current tecfidera

Of course, your doctor knows your case better than I do and may have other information that you (and I) are not aware on which he or she is basing their recommendations. I would encourage you to have a full discussion with him or her about all the reasons for this recommendation to change therapy. Make them defend this decision.
Since we are not curing MS yet, we expect occasional hiccups and one every 5 years that last 4 days is not a major decision making event.

​Thank you for your question and providing the great amount of detail about your case

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
I have been getting Ocrevus for about two years and think I had Covid 19 a month ago. I was never tested for it. Would the antibody test for Covid 19 be accurate for me, or would the Ocrevus affect the results?

Answer:
Antibody test results for COVID 19 should not be affected by treatment with Ocrevus unless you are severely deficient in immunoglobulin. For instance, Ocrevus treatment does not affect other antibody test results in most patients.

Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego

Here is My Question:
Although I have been diagnosed with fibromyalgia and small fiber neuropathy, I have blurred dim double vision in my left eye which is to common to both of these. Could this indicate MS? I have had a total spine and a head MRI but nothing showed up on these.

Answer:
If your MRI brain and spine were normal, then it is unlikely the symptoms you are having are due to multiple sclerosis.  If your vision problems are getting worse however I do recommend you see an ophthalmologist to determine the cause of your vision problems.

Benjamin Osborne, MD
Associate Professor of Neurology and Ophthalmology
Director, Neuromyelitis Optica (NMO) and Neuro-Ophthalmology Clinics
Associate Director of the NIH/Georgetown Neurology Residency Program
Medstar Georgetown University Hospital

Question:
I re-started Tysabri in 1/19 after 6 years on Tecfidera because I couldn’t deal with the GI effects any more. I picked 6 week intervals due to JCV titer 2.5-3.

I started Nucala in 6/19 due to worsening asthma (oral prednisone needed with every URI and 1st ever asthma hospitalization in 1/19). Neither my pulmonologist nor my neurologist knew of any specific issues though neurologist is clearly not happy to have me on both.

Actually he’s just not happy to have me on Tysabri period and keeps pushing Ocrevus. So I wrote to you again last month. Since then and after reading what you have written about Ocrevus and Coronavirus I decided that Ocrevus was not for me even without Coronavirus because I had another 4 day asthma hospitalization in January 2020. Both admissions were for exacerbation triggered by seemingly ordinary colds.

Because I have done fine after 3-6 month Tysabri holidays during the first 6 years I was on it (2006-2012) I also decided to forgo my April 9th Tysabri infusion.

I am 62, have bad asthma despite aggressive maintenance regimen and have hypertension and Type II diabetes (Rx w/ Trulicity) though both are under excellent control (HgbA1c =6.7 12/29/19 despite being on 60mg/day prednisone the previous 2 weeks).

Coronavirus would probably kill me. And a Gerontologist friend from college got Coronavirus from a nursing home patient they thought got it at a dialysis center. So staying home seemed like the best choice. I have not left home since 3/17. My husband has worked from home since then and does groceries every 7-10 days.

But during my January hospitalization there was discussion of possibly switching from Nucala to Dupixent which is also being investigated as a hair loss treatment. My hair has been thinning for over a year to a degree that has become pretty distressing so I am interested in trying Dupixent instead of Nucala.

But the question about interaction with Tysabri remains. Are there any known or theoretical problems with combining Tysabri and Nucala or Dupixent? Thanks for your help.

Answer:
Both Dupixent and Nucala are monoclonal antibodies that inhibit the overactive Th2 immune responses associated with atopic dermatitis, asthma and various diseases medicated by eosinophils. Dupixent inhibits IL-4 and IL-13 whereas Nucala and several other products inhibit IL-4. Interestingly, Tysabri treatment in MS patients tends to increase circulating IL-4, IL-13 and IL-5 levels as well as several proinflammatory cytokines. This effects occurs rapidly after initiation of treatment with Tysabri and is maintained for over a year for the elevated levels of IL-5 and IL-13.  So is it possible that re-initiation of Tysabri treatment aggravated your asthma. There are reports of this occurring in people on Tysabri and even rare reports of eosinophilic pneumonitis. 

So perhaps  is not a bad idea for you to discuss discontinuing the Tysabri with your physician. You have not rebounded in the past when stopping Tysabri and you are over 60 with a type of MS that tends not to respond well to Tysabri. 

​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego