AnswerHere is my question:
What do I do if my new insurance won't approve Rituxan or Ocrevus? I've been on Rituxan for 3 years and I am doing well on MRI. I am losing my insurance because I am quitting my job. It is just too much for me to work anymore (I only work a couple of hours per week, so I cannot reduce more than that). I am going on my spouse's health insurance plan, but that plan plainly states it will not cover Ocrevus. It will only cover Rituxan after failing two other drugs first. I am afraid of what failure looks like with the amount of lesions and locations of them. What would you prescribe your patients? What do I do?

Answer:
It is hard to completely answer your question without knowing a little more about your condition. First of all, if you have progressive MS there are no other drugs approved other than anti CD20 agents such as Ocrevus or rituximab. Therefore, insurance really can not deny coverage in this circumstance unless you are too disabled (wheelchair bound) or too old (over 65). 

If you have relapsing MS, use of the anti-CD20 agents is discretionary by insurance companies. Here are my thoughts in this situation:

First things first: if you've been receiving rituximab every 6 months for 3 years, it is likely that the benefits of this treatment will last for several years without requiring any further treatments. There is no evidence that either rituximab or Ocrelizumab needs to be administered every 6 months indefinitely. In fact there is good evidence that the effect of a single treatment lasts more than a year. This means you can relax for the time being.

What you need to do is get your neurologist to monitor your condition with yearly MRIs and regular visits to determine if there is any evidence of worsening function.

Your neurologist can also monitor your CD19 blood counts. This will determine when the effects of rituximab are wearing off. Normally, your CD19 count is approximately 10 to 15 % of your total lymphocyte count. Following a single infusion of rituximab or Ocrelizumab at standard doses, CD19 counts in the blood remain very low or undetectable for 6 to 18 months. After repeated infusions of rituximab every 6 months (for 3 years in your case) the counts will sometimes remain low for more than 18 months. Since the main effect of rituximab is to deplete (kill off) the CD19 positive lymphocytes in your blood stream, this is a pretty good marker of drug effect. Interestingly, in MS patients the activity of your MS does not tend to return when the CD19 count normalize in your blood stream. This may be a result of prolonged beneficial effects of treatment on immune regulation.

If you do need another treatment with rituximab anytime soon, we can provide your doctor with a draft letter of medical necessity that is often helpful during peer to peer negotiations.

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:
​Are Patients with MS More Susceptible to Increased Levels of Chronic Pain? I have had MS for a few years and I have noticed that since the disease first manifested, I have experienced chronic, unremitting pain that is out of proportion to the original injuries. Before this, I had a very high pain tolerance and never needed pain medication or ibuprofen beyond a couple of days after being injured or having surgery. For example: Since I have developed MS, I have had shingles along my trigeminal nerve and developed bilateral sciatica due to foraminal stenosis (no cord involvement). Doctors have assumed that, due to my age (early 30’s) I would have a relatively uneventful recovery from both. This is not the case. It’s as if the pain signals have been switched on permanently. Neither of these conditions were caused by MS, but I am wondering if having MS makes us more susceptible to something like a central pain syndrome even with injuries sustained outside of the CNS. Could it be caused by sub-clinical damage to the tracts within the CNS that regulate pain, even if no lesions appear in those areas on MRI?

Answer:
Your question and observations are extremely astute. MS specialists have observed for years that MS patients experience pain differently and chronic pain in MS patients modifies pain thresholds and responses to other non MS related conditions and injuries.

The best approach is to work on modifiable risk factors for chronic pain. This includes doing the following:

1. Treatment any underlying affective disorders (anxiety and depression) 
2. Improve your  sleep
3. A regular exercise program following guidelines of 150 minutes per week of moderate vigorous exercise
4. Learn Meditation and/or  mindfulness and perform regularly
5. Improving your social support network if necessary
6. Never smoke or stop smoking
7. Avoid narcotics

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 experiencing what seems to be SPMS, and having a huge hard time starting on Ocrevus since it was NOT approved for secondary progressive but rather for pimary!

Any advice from you would be greatly appreciated. I have had MS for about 25 years and have as of 4 or 5 years ago been experiencing a lot of fatigue and increased balance issues. 

Answer:
Let me try to help you frame your question in a way that will help you and your doctors. The information provided in your question suggests that you are at least 45 years old, and possibly over 60, with symptoms related to MS for at least 25 years. Whether you have secondary progressive MS is really in the eye of the beholder. As neurologists we define progressive MS as a measurable and consistent decline in your performance  for a period in excess of 6 months not caused by relapses, although having SPMS does not mean you can not also experience relapses. An example would be a patient with mild right leg weakness and a limp on visit 1 followed by gradual onset of more severe weakness in the right leg and mild weakness in the right arm  observed 12 months later associated with the need for a cane to walk followed by worsening weakness on the right side and greater difficulty walking 24 months after the first visit.  This is not to say that people with SPMS experience a continuous decline in function; Don Goodkin published a study in the 1980s showing that many people with SPMS remain stable over intervals as long as 2 years suggesting that the apparent or perceived progression of the illness is discontinuous in nature. 

There are other people with longstanding MS who initially experience a relapsing remitting course but eventually stop having verifiable relapses (or they become very rare) and also do not experience measurable worsening of function over intervals in excess of 2-3 years. Yet these same people accumulate a number of problems over time as a result of prior disease activity. These problems tend to involve symptoms such as  pain, mood disturbances, sleep disruption, fatigue, dizziness and impaired balance. These problems, in turn are often worsened by unnecessary medications, co-existent medical problems (e.g. diabetes), decreased activity levels and social isolation. To make matters worse your body and your nervous system continues to age but you have less resilience to the effects of age because of prior damage from the effects of multiple sclerosis. 

Regardless of whether you have SPMS as defined in the first paragraph or your condition is more appropriately characterized by my description in the second paragraph, the first step in management is to define your current problems and all contributing factors and work to address these issues, specifically. Disease modifying therapies will not be the solution; while some, such as the recently approved siponimod (Mayzent), may help prevent further progression in the correct circumstances, none of them will help with your fatigue and balance issues. So what do you do?

First, you identify all the potential causes of your fatigue including underlying medical problems (e.g. hypothyroidism), mood disturbances (anxiety and depression), sleep disruption and  especially medications. It is particularly common for people with longstanding MS to find themselves on a long list of medications that will worsen fatigue; in these cases we often find that gradually stopping all these medications under a doctors supervision is remarkably beneficial.

Balance issues are also commonly worsened by medicationsm, but usually require intensive neurorehabilitation to resolve (e.g. physical and occupational therapy) .

Start with this approach and avoid the trap of looking for a solution with a new disease modifying therapy. Once you’ve had some success managing the fatigue and balance problems, then you can begin discussing whether it is even appropriate to consider disease modifying therapy at your stage of the disease

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 had an attack 4 years ago where my legs went completely numb and I had a tremor, but all resolved in a month. My MRI was all clear and my exams were normal. I have had right side weakness and my arms have become weak over the years. I have seen many neurologists over 4 years who say all my MRIs and exams are clean. Now over the past year I haven’t seen anyone and now I can’t lift my left foot up. It is like a 5 pound weight. My arms (mostly my shoulders) are very weak as I can only wash my hair once a week. Just the idea of moving my arms above my head is too hard or putting my bra on too difficult. My hands are strong. My right side is still a little weak and I do limp if I walk to much with right side.

​I just saw an Internist to figure this all out and he said my exam is positive with weakness but my spine was clear. Brain hasn’t been done in 2 years. They just ordered that and he wants me back to a neurologist!! So this has to be MS? Help! I am a 51 year old female. Is this PPMS? They all laughed and reassured me for years I was fine. The only other thing I remember is pain behind my right eye a few years ago and I felt some burning sensation on thoracic area a few years ago ? What advise can you give me?

Answer:
I’m very sorry to hear of your physical struggles which is worsened by the fact that prior evaluation couldn’t pin point a cause. MS shouldn’t be the only consideration. A skilled, inquisitive, and detailed neurologist can assist with careful exam to try and localize where the problem is focusing on (ie, muscle, peripheral nerve, central nervous system, etc). Based on that, a focused or expanded evaluation may be indicated. Unfortunately some neurological issues require longer periods of time to manifest what they are. For lengthy periods of time, they can even stay beneath the detection of an MRI.

In order to answer your ultimate question of what can be done, the neurologist can assist at this point in time to hopefully narrow down possibilities.

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

Here is My Question:
Can Prolia be used with Tecfidera?

Answer:
Prolia is a biological (protein) that should not interfere with a small molecule like Tecfidera.

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

Here is My Question:
Hi, I'm a 23 year old male and have left side optic neuritis, a lot of plaques at periventicular and central semioval and juxta cortical areas on MRI, 3 enhanced lesions. This is my first attack, please tell me the next step after corticosteroid pulse therapy.

Answer:
You should see a neurologist who specializes in treating multiple sclerosis. Optic neuritis is frequently due to MS and the MRI findings you describe sound suggestive of MS but you need an neurologist with expertise in MS to confirm that diagnosis. If that diagnosis is confirmed, the neurologist will most likely recommend starting treatment for MS (there many different medications now approved by the FDA for treatment of MS).

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

Here is My Question:
Can Spasticity Be Caused By Brain Lesions in MS?

I’ve am diagnosed with MS and although I do not have any visible lesions on the spine with MRI, I experience generalized stiffness and tightness throughout my body. It is extremely apparent in both legs. I am unable to stretch my legs well when they are out straight and I have to bend my knee to do any type of stretching. This has gotten progressively worse over the past few years. 

Is it possible to have spasticity without spinal cord lesions? Are there certain areas of the brain that would be responsible for this? 

Answer:
It is certainly possible for people with MS to have spasticity in the extremities without any discrete lesions visible in the spinal cord. Spasticity can occur as a result of injury anywhere between the cortex of the brain up to but not including the anterior horn cells of the involved region in the spinal cord

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'm a 36 year old female, diagnosed in 2016 with non-progressive relapsing MS; 20+ brain lesions and 4 spinal cord lesions (C2, C6, T3, T4). I'm on Rituximab (1 new brain lesion 2017, everything else great since). 

My legs have been sore for a few weeks so I contacted my neurologist...existing lesions, and I refused medication. My right loosened up but shakes (as usual). For the past two days, my left leg is very heavy-more numb than usual-feels like it's a tree trunk, and I cannot easily go up stairs. Can start with right, but left can't support (pain and weakness). I am sure I am not as severe as others on here, but I don't know what to do when I start to feel like I am losing mobility. What can I do? Do I contact my neurologist? Live with it? Rest? How long should I tolerate it? Meanwhile, do you have any alternative therapies that might be helpful?
​
Answer:
It sounds like you have new or worsening weakness and numbness in your left leg affecting your function that has persisted for at least 2 days. You are either experiencing a relapse or a pseudo-relapse. A pseudo-relapse is usually caused by an infection, often a urinary tract infection. 

Either way you should contact your MS specialist for advise. Relapses can and do occur in people on rituximab, even though it’s a very good treatment.

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:
Does current research indicate contraindications for Tysabri throughout pregnancy?

Answer:
Pregnancy is not a contraindication to the use of Tysabri (Natalizumab). We usually advise the use of Natalizumab, as well as many other disease modifying therapies (DMTs), during pregnancy when the mother is advised of the risks involved and the physician and mother determine that the risk of stopping the DMT is greater than the risks of continuing the DMT.  

So what are the risks and how do you make this kind of decision? Here is what we know:

Risks of  exposing the developing infant to Tysabri during pregnancy:
1. A recent study of 80 plus pregnancies in the which the developing embryo was exposed to Tysabri revealed a higher miscarriage rate in the first trimester compared to a control group of pregnant women with MS exposed to interferons or no treatment. However, the rate of miscarriage was within the expected range for the general population of pregnant women.
2. There is weak data on congenital anomalies or defects in children born after exposure to tysabri. Generally this means there is not enough data yet to draw any conclusions
3. There is some data that infants exposed to tysabri in the third trimester of pregnancy may experience  temporarily hematologic abnormalities, particularly anemia and low platelet counts. The pediatrician and obstetrician need to be aware of this possibility.

Risks to the mother of stopping Tysabri before pregnancy or after learning your are pregnant:
1. Stopping Tysabri before your last menstrual cycle is associated with a large increase in the risk of relapse(s) during pregnancy (56% of patients relapsed compared to 10 % of the control group of women with MS)
2. The risk of relapses during pregnancy is reduced if tysabri is stopped after your last menstrual cycle (20% of patients relapsed compared to 10 % of the control group of women with MS)
3. The risk of disability progression and relapse is probably increased in women who do not restart Tysabri shortly after delivery.

Use this information to have further discussions with your MS specialist. Patients on Tysabri who are at highest risk of a relapse (2 relapses in the 2 years prior to starting Tysabri and an active MRI scan prior to starting tysabri) during pregnancy if they stop Tysabri to get pregnant have several options to consider (these same options could be considered for most patients on Tysabri, but the risk benefit ratio will be different):

1. Continue Tysabri during pregnancy with monitoring of the fetus. Consideration could be given to extending the dosing interval to ever 6 weeks although there is no evidence that this would reduce the risks to the developing infant. It may be wise to stop Tysabri 2 to 3 months  before delivery (the longer amount of time off, the greater the risk of relapse) and restart immediately after delivery to avoid anemia and low platelet counts in the newborn.

OR

2. Stop Tysabri before pregnancy and get one cycle of anti-CD20 treatment (Ocrevus or Rituximab),just before pregnancy to prevent relapses during pregnancy. If not pregnant within 6-12 months consider another cycle of anti-CD20 treatment at that time.

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:
Does drinking collagen affect MS in any way?

Answer:
Drinking collagen should not harm or help MS. This mostly gives your body extra hydroxyproline, the main amino acid component of collagen. Hydroxyproline is not an essential amino acid for your diet, meaning you do not need to supplement your diet for your body to make adequate amounts to meet your daily needs. 

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 diagnosed with MS a few years ago. I was planning on getting a recreational card for migraines and anxiety, however, does marijuana affect the MS in any negative way?

Answer:
There is some data that indicates neuropathic pain and spasticity in MS could be helped with marijuana.  However, there is also data that it can affect cognitive performance as well.  For neuropathic pain and spasticity, there are legally (Federal) prescribes medicines that can address those specific symptoms.  You can refer to the symptoms section of this site to explore those potential options:  https://www.healthcarejourney.com/symptoms.html

For more on MS and cannibis:  https://www.healthcarejourney.com/q--a-for-virtual-ms-center/medical-marijuana-and-its-impact-on-multiple-sclerosis
Regarding cognition and MS, you can refer to our website as well:  https://www.healthcarejourney.com/cognitive-dysfunction.html 

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

Here is My Question:
I’m asking this question out of frustration of results from overpriced medications Ampyra and Copaxone. SARMS and peptides seem to have some benefits for people with MS. Has the medical community looked at this opportunity?

​Answer:
SARMS, also known as Selective Androgen Receptor Modulators, are not approved by the FDA and are under investigation for a number of conditions including MS. My understanding is that the unregulated product people buy on line is often not what they promise it to be. Whether these drugs will be of any benefit is unknown at present. Not sure what “peptide” therapies you are referring to in your question.

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:
My understanding is that live vaccinations are contradicted in patients being treated with Ocrevus. I have read different opinions on being around people who receive live vaccines. My question is about pets who receive live vaccinations - particularly the kennel cough vaccine - Bordetella-.B. bronchiseptica. Would giving this live vaccine to dogs be a problem for an owner with a compromised immune system due to Ocrevus treatment?

​Answer:
I see little reason to be concerned about exposure to people or pets who have received live vaccines

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:
Is it safe to do breastfeed while on Avonex?

Answer:
There was a study several years ago of interferon concentration in the breast milk of mothers taking regular weekly doses of Avonex. They measures the concentrations out to 7 days and found very small amounts of interferon in the breast milk at all time points. None of the infants displayed any side effects or abnormal behavior

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

Question:
I have night sweats with Tecfidera. What can I do about it?

Answer:
Night sweats with Tecfidera are not that uncommon in my experience. Some people benefit from an aspirin at bedtime. Try a baby aspirin first (81 mg) and increase to 325 mg or even 650 mg as needed. As always ask your doctor if it is advisable for you to take aspirin on a regular basis.

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: 
I am 37 and will be starting Ocrevus soon but a bunch of vaccines were ordered before I start it. My doctor wants me to get the Hep A, HPV, HIB, Pneumococcal, shingles, tdap. I got the tdap and pneumococcal today. HIB, HPV, and shingles were denied because of age and hep A for unknown reasons. 

1. Do I need the HPV vaccine at 37 if I’ve had HPV in the past and am now completely negative since I had my daughter in 2010 and I’m also in a monogamous relationship? 

2. Should I get the shingles vaccine this early? I did have chickenpox as a child. 

3. Are the HIB and Hep A usually recommenced? 

Also, should I get the breast cancer gene test if I am unsure of family history or beast cancer? 

Answer:
The vaccines you mention are all appropriate but not all will be covered.

1.  The FDA only recommends the HPV vaccine to age 26. it will not hurt you to get it after age 26 but it’s also not likely to be required given your monogamous relationship. If you plan on more sexual partners or think your partner may be having more sexual partners then it may be a good idea. No matter the circumstances you would need to pay for it yourself.

2. Shingles is probably not required at your age if you have good immunity to varicella ( a blood test will tell).

3. Hep A is a good idea if you live in certain areas like San Diego or the southwest where we have had frequent outbreaks.

4. By HIB you are referring to the haemophilis influenza type B vaccine. This is usually given to children and probably not necessary for you, especially since your daughter is 8 or 9 and probably received this vaccine before the age of 2.

5. Ask your doctor about getting BRCA 1 or 2 gene testing. This is usually only recommended for people with family medical histories of breast cancer or several other types of invasive cancer (pancreatic and prostate) especially in people with an ashkenazi jewish background. We usually do recommend pap smears and mammograms before starting Ocrevus if not done recently.

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 diagnosed with MS last year. Not sure which type but no clear cut relapse or remission just symptoms that don’t go away. My walking is mostly not affected other than from vertigo so my neurologist isn’t taking me very seriously. I have multiple hyperintense T2 lesions of the periventricular area, a positive LP, at least one major incident we think was the beginning of this back in 2015 when I had Parvo virus. Also VERY BAD “MS hug" but no obvious lesions on the spine but my recent MRI interpretation says there may be 2 subtle areas of signal abnormalities likely representing demyelination. My neurologist wasn’t sure if he could see them and they were only visible on the axial images. 

I also have some T1 hypointensities on the MRI of the brain. I read that the 2D images are better at preventing over interpretation of these and I do have them in the T1 2D but they are dark but not as black as the CSF. I was on Copaxone prior to these possible spinal lesions and I have decided to switch to Ocrevus. I was worried mine might be more of the slow progressing type. My main issues are cognitive, MS hug (girdling), muscle spasms, neuropathies, vertigo, and more. 

My main questions are, does this sound like progressive type? Do you have t1 hypointensities in Relapsing remitting? Does this sound like definite MS? My neuro diagnosed me but always down plays my concerns about progression and wanting to be on a more aggressive drug than Copaxone so sometimes I just feel like it’s all in my head (pun intended). 

I was tested for everything under the sun and it was all negative so its either MS or some other unknown problem no one can figure out. Is it too aggressive to try Ocrevus or is it better to just be proactive and take care of it now? I’m just afraid to play it slow and possibly end up with worse damage. Do the darker T1 areas mean more progressive or more intense disease? 

Answer:
I am not able to determine if you carry a diagnosis of MS based on the information provided. I also do not know your age, which is important. Let’s assume your first attack was in 2015, as you suggest, and you’ve been on Copaxone for a year. It is not clear from your description whether any new problems have developed over the past year, but you may have developed new MRI abnormalities over the past year.

Based on this information let me answer your specific questions:
​
1. T1 hypointensities occur in all types of MS including relapsing MS but become more numerous and darker with disease duration. They are one of many risk factors for disease progression but this depends on your age.
2. As I said I can not determine if you should be characterized as definite MS based on the information provided
3. Progressive disease is always defined in retrospect and requires objective changes in neurological function on examination. From your description, your disease does not sound like progressive in type, at least not yet
4. There are many great options for treatment between copaxone on one end of the spectrum and Ocrevus on the other end of the spectrum. A lot depends on your age, other medical problems and your possible desire to have children in the near future. 

You should talk to your neurologist about oral treatment options to start. Tecfidera, Gilenya and Siponimod (just approved by the FDA) may be more effective than Copaxone and are well tolerated. 
Good luck

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