Here is My Question:
Can I switch back to Tysabri from Ocrevus?

After 4+ years on Tysabri I became JCV+ with a high titer #. For the last year and a half, while on Ocrevus, my symptoms have been continuously up, without relapse. Definitely felt better when on Tysabri.
Given the new extended Tysabri dosing regimen, can I consider switching back? Is there any info on switching back that would help make this kind of decision?

Answer:
We do not have any direct data to answer your question at this time, so there will always be unknown risks associated with this treatment decision. Remember, there may be risks other than PML that we are not even aware of at this time, since few people have been methodically switched from an anti-CD20 drug to Tysabri. 

If you do decide to switch back to tysabri, consider the following information:

Risk factors for the development of PML on Tysabri given at every 28 day intervals include JCV index > 1.5, lower weight (Less than 60 Kg), older age (over 60) and low lymphocyte count. You can probably mitigate against all of these risks, except low lymphocyte count, by extending the interval between tysabri infusions. Therefore, it is probably important to make sure that your absolute lymphocyte count and T cell subsets are normal before restarting tysabri. If possible you may want to wait until your B Cell count is on the rise, but this could take up 6 to 18 months after your last Ocrevus infusion.

Before restarting Tysabri make sure you have a new baseline MRI of the brain (only is required to monitor for PML) and then monitor with MRI every 4 to 6 months after re-starting Tysabri

Make sure you have a good discussion with your MS specialist about your current disease type and stage and risk of inflammatory activity; tysabri is not very effective in well established progressive MS and the risks of treatment would not be warranted if you are in this 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

​Question:
I have been on Aubagio for almost two years. Is it OK to have the Shingrix vaccine? Everyone tells me it is an inactive vaccine. Thanks.

Answer:
Yes, it is true that Shingrix is not a live viral vaccine.  Use of Shingrix while on a DMT (ie, aubagio) may be blunted due to the MS therapy.  Per CDC, if you are negative for the chicken pox virus antibody (meaning you do not have immunity against the chickenpox virus), you should not get this vaccine.  Your neurologist can test for this by sending for a VZV IgG antibody titer (blood test).  If you are younger than 40, there is a chance that you are negative for the chicken pox antibody (those over than 40, and before the vaccine era for VZV, are likely to have memory immunity for chicken pox and could get the Shingrix vaccine).  Before you pursue this vaccine, please discuss with your MS provider as there may be other considerations for this vaccine in your specific case.

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

Here is My Question:
I have RRMS but a mild form. My neurologist/MS specialist doesn’t believe a DMD will benefit me. All symptomatic medication has given me all the side effects and seem to be sensitive to them.
Your thoughts??

Answer:
Decision to treat or monitor off a DMT is a case specific decision. In most circumstances treating is favored as the DMTs are preventative rather than restorative. The best time to use DMTs is early in the disease course for that reason. The decision when to come off therapy is challenging given the unpredictable nature of the disease. Prolonged periods of disease quiescence may indicate that the inflammatory phase of the disease (the phase we are best able to treat) has passed and the patient is unlikely to benefit from DMTs any longer. Any decision to come off therapy with a monitoring plan should always be done in coordination of your treating physician.

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

Here is My Question:
Is it normal to feel like you’re going through the five stages of grief after a diagnosis of RRMS? I feel like I have been stuck in denial since I haven’t had any symptoms since my diagnosis last year. 


Answer:
With any life changing event, it takes time to process the "new normal". MS is no different. Most patients go through a period we call the adjustment reaction which can be experienced many different ways, including denial and grief. Some may have a return back to their normal baseline function after the early diagnosis and feel pretty good. They go about life and ignore or compartmentalize the diagnosis and even start to wonder if the diagnosis was a mistake. This can be dangerous because it leads some to stop seeing their physician or even stop their preventative therapy. 

It's an "out of sight, out of mind" scenario. They effectively are led into a false sense of security. We have learned that MS is unpredictable in the short term, but natural history data paints a fairly clear picture of what occurs in the long run if no action is taken to alter the course of the disease. On the path of the adjustment reaction to the diagnosis of MS, it is important to be vigilant and not get stuck in this phase.

If the adjustment reaction leads to intense anxiety or depression, I would urge patients to discuss this with their physician. Many times, medicine for those symptoms are not necessary, but if protracted, some may need that help temporarily until they get to the other side and leave the adjustment reaction behind.

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

Here is My Question:
I am 37, and just found out I am pregnant with an unplanned blessing. Currently on Lemtrada, had 3 rounds, last one was Nov 2017. Prior to starting Lemtrada I was on Tysabri and went off to have a baby. I had a horrible post-partum relapse at which point my neurologist told me to be done having kids (I have 2). Which leads us to today...I’m about 6 weeks pregnant and I called my neurologist to get his advice and he essentially told me to terminate this pregnancy. Have any of you had success protecting you patients from relapses post pregnancy? This resource is amazing...thank you! 

Answer:
Based on what is provided here I have no idea why termination is being suggested. If the last infusion was over a year ago the drug is long gone from the system. I would make sure to seek a second opinion.

Benjamin M. Greenberg, MD, MHS
Vice Chair of Translational Research and Strategic Initiatives
Cain Denius Scholar of Mobility Disorders
Distinguished Teaching Professor
Department of Neurology and Neurotherapeutics
Department of Pediatrics
UT Southwestern Medical Center
Dallas, Texas

Here is My Question:
I was just prescribed Humira for RA. I also have RRMS, and have not done well with Tysabri; I was recently put on Rituxumab. My doctor doesn't see a problem with both drugs, but I want to make sure there aren't any interactions. What are your thoughts? 

Answer:
Humira is relatively contraindicated in patients with multiple sclerosis. This should only be used in patients with MS and RA who REQUIRE Humira to control their RA AND their MS is well controlled. 

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:
In what circumstance would Rituximab be used as a first line therapy?

Answer:
Generally, Rituximab would be considered appropriate as a first line therapy in the same circumstances that Ocrevus would be considered as first line therapy. The difference is that Ocrevus is specifically approved by the FDA for treatment of relapsing and primary progressive MS and easier in most circumstances to get approved by insurance carriers for these indications. The exception is Kaiser Permanente insured patients, where Rituximab is part of their formulary for MS 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:
I currently am on Ocrelizumab. My doctor does no blood work other than CBC and LFT before each dose. They did check for hep b before the first half doses. Are there additional blood tests that should be done while being treated with OCREVUS? 

Answer:
You doctor is doing the minimal amount of blood testing required for people who are already receiving Ocrevus. Many MS specialists do additional testing for the following reasons:

1. Many doctors monitor immunoglobulin levels (IgG, IgM, IgA) before starting treatment and then every 6 to 12 months. A significant number of people on Ocrevus will become deficient in IgM and IgG antibodies with prolonged treatment and this may increase the risk of certain infections, particularly upper respiratory tract infections. These deficiencies can be corrected with immunoglobulin infusions if necessary.

2. Most doctors recommend regular cancer screenings, particular breast and cervical for women and skin for all

3. Some doctors track CD19 blood counts to adjust the interval between infusions, generally lengthening the interval between treatments to hopefully minimize the potential risks of long term treatment. The current recommended treatment interval is every 6 months, but there is some evidence that this interval can be extended if B cell counts (CD19 + cells) remain suppressed 6 months after infusions. This requires considerably more study, before this practice can recommended.

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