Here is My Question:
MS treatment during Breastfeeding

Hi! I got pregnant 3 months after my last Ocrevus infusion. I am 13 weeks now and feeling ok without receiving any MS treatment. However, I am aware of the increased risk of relapse after delivery and I'd love to breastfeed if at all possible. Please, do you know of any treatment that could keep me safe without MS attacks during the breastfeeding time? Thanks so much!

Answer:
Ocrelizumab is a large protein and very little should be detected in breast milk, even shortly after an infusion, as long as you do not receive the ocrelizumab infusion during the first week of breast feeding. The small amount that is found in breast milk will be destroyed by gastric secretions and will not be absorbed by the infant in a biologically active form. This information is based on studies of other large monoclonal protein therapies. To my knowledge no one has measured the amount of Ocrelizumab in breast milk as of this writing. There are anecdotal reports of breastfeeding mothers receiving either Ocrevus or one of the other anti-CD20 monoclonal antibodies with no evidence of harm to the infant. 

We recommend that patients with MS and their MS specialist assess the risk of relapse post-partum and make a determination of the best time to resume treatment. We hold off on the resumption of treatment until after the mother stops breast feeding, if the mother's disease activity risk factors were low before starting the therapy. If we do hold off on the resumption of disease modifying therapy after the baby is born, we will often pause breastfeeding between 6 and 12 weeks postpartum to repeat imaging studies to reassess the risk of a postpartum relapse before either resuming breastfeeding or ceasing breastfeeding to restart MS treatment.

Good luck to you

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

PLEASE NOTE: This information/opinions on this site should be used as an information source 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:
Can the MS treatment (medicine) AUBAGIO cause shingles?

Answer:
Shingles is not a listed risk of treatment with Teriflunomide (Aubagio) for Multiple sclerosis. However, many of the MS DMTs, including Aubagio, can potentially suppress immune responses and increase your risk of unusual infections or reactivation of dormant viruses like varicella, the cause of shingles. This is more common in older patients (> 50), those with prior immunosuppression and those with a lowering of absolute lymphocyte counts on therapy.

We encourage our patients to obtain a Shingrix vaccine if they are over the age of 50 and receiving a potentially immunosuppressive therapy. This vaccine is very effective at lowering the risk of shingles.

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

If you type in "MS Hug" into the search bar in the top right hand corner of this page, you will find quite a lot on the topic. If you don't find the answer you are looking for, please let us know.

-The HealthCare Journey Team

Here is My Question:
Do you have to wash out Betaseron before switching to Ocrevus?
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Answer:
There is no scientific or medical reason to, "wash-out" any interferon beta therapeutic agent (this includes Betaseron, Extavia, Avonex, Rebif or Plegridy) before starting another disease modifying therapy (DMT), unless the interferon is being discontinued because of a lab abnormality or side effect. If the switch is occurring for either of these reasons, it is prudent to wait until the lab abnormality or side effect improves before initiating the new DMT. The necessity of waiting to start a new DMT is usually based on the clinical circumstances and judgement of the treating physician.

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:
There's a report out that Ocrevus canceled out chicken pox antibodies in someone with RRMS. How does that affect someone with PPMS who would like to get the shingles vaccine Shingrix?

Answer:
B-cell biologics can lower antibody production levels and can hamper the humoral immune response to vaccination. When b-cells are transiently absent (depleted) after an infusion, vaccines are less effective and should be planned in a timeframe that takes this into account. The exact number of b-cells needed to mount a robust antibody response is of research interest right now.

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

Here is My Question:
I am a male age 39, and I'm having a variety of fun symptoms (as my doctor calls them), and I'm now awaiting an EMG exam.

I've had a MRI without contrast fluid on brain, upper spine and lower spine without any findings. Was unusally fine for my age group.

I've had sensory changes, an odd feeling on half my tongue, and unilateral facial pain/numbness. l've also had a headache with ear pain and pain above my eye socket. Usually it is located on the right, but can suddenly change to the left with no warning, but with an identical pattern. But always one sided.

No weakness but left and right side of my body feels different. I also experience muscle twitching with no pattern, for example left bicep twitches for 3-4 seconds, then on my right calf, then on my left little finger.

I also experience slight sensation reduction around the body, and no vibration sensation in my right leg (but can sense tapping, rolling, position changes, and touching just not vibrations.

What are the chances this could be MS? I'm starting to get real anxious of a potential MS diagnosis. No MS in my family but migraines and idiopathic peripheral neuropathy on my mother's side and diabetes on my father's side..

If this ends up with a MS diagnosis, how is the prognosis for people diagnosed nowadays?

Answer:
Sorry to hear of the variety of "fun" symptoms.

If it is correct that your MRI of the brain and spinal cord is normal, then it is highly unlikely that you have MS.

From what you shared, it does make sense to study your peripheral nervous system (that is the EMG/nerve conduction study) since your symptoms could arise from this rather than the central nervous system (which was imaged on the MRI).

Although I doubt you have MS based on the information provided, to answer your last question, the treatment of MS has come a long way over the past 2 decades that I've been following MS patients in the clinic.  While therapeutics haven't reached the "cure" level yet, we do have highly effective therapies now that in some patients can achieve a state called "no evidence of disease activity" which essentially means a permanent remission status.

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

Here is My Question:
Could more oral Baclofen make the hip flexor worse rather than better? I raised my Baclofen to 20 mg. three times a day and walking steps is harder than before.

Answer:
One of the downsides of higher doses of baclofen is an excessive reduction of flexor muscle tone and the perceived leg weakness you describe in your message. This usually means it is time to adjust your daily baclofen dose. Some people with MS who experience this phenomenon on high doses of baclofen taken three times a day benefit from taking small doses more frequently (e.g. 5 to 10 mg every 4 hours while awake) to maintain control of their excessive muscle tone; other people will maintain their usual schedule but take reduced doses. Talk to your MS specialist about the options.

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 started Plegridy 5 months ago and have had some strange side effects that I can't find reported anywhere else. I have found my vaginal muscles contracting on injection day...strange sensation. But also have noted over the past few months and on several occasions I have woken to an orgasm (happened last night). Sounds great..but it is rather strange. Are there any reports of these kind of side effects? I am female and in my 40s.

Answer:
As far as I am aware, this is an unreported symptom related to Plegridy injections. You should report this to the Biogen Drug Safety reporting line (1-866-418-2859). We can only determine if a symptom is a side effect of treatment if enough people with similar experiences report this problem to the manufacturer.

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 my leg hurts is it appropriate to keep exercising?

Answer:
Whether or not you should exercise when a limb is painful depends a great deal on the cause and severity of the pain . This is often why physical therapists require clearance from a doctor before starting therapy. The potential causes of pain in a limb are really too numerous to give you a useful answer. Please direct this question to your PCP or MS specialist for a response.

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:
When I get extremely hot, it ooks like I'm looking through very thick fog but when I cool down my vision goes back to normal. Should I be worried and go see a doctor?

Answer:
What you describe it called Uhtoff's phenomenon.

I am assuming you have multiple sclerosis and that you previously had optic neuritis.
After someone has had an attack of optic neuritis (and recovered) there can be transient episodes of blurry vision when the core body temperature rises and the vision recovers as the body cools off.

This is not another attack of optic neuritis but rather a well described phenomenon (Uhtoff's phenomenon). The rise in body temperature is not causing further or new damage to the optic nerve. Rather the rise in temperature is unmasking the prior damage to the optic nerve which occurred when the optic neuritis happened previously.

If you have not seen an ophthalmologist or neuro ophthalmologist recently it is probably a good idea to follow up with one in clinic but it is not urgent.

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

Here is My Question:
Various doctors have suggested I have MS, 3 times over past 17 yrs, due to having most symptoms, no other causes, even MS lesions on my MRI. However, my lumbar puncture was clear a few yrs ago. HLA-B27 positive also. Since lumbar was clear, they said not MS. But fail to be able to give me another Dx. So I'm stuck in limbo with no meds.

Answer:
Can you have MS with no signs of it in a lumbar puncture? Approximately 5-10% of patients with MS will have normal spinal fluid. The test can be helpful to confirm "dissemination in time" which is part of the McDonald diagnostic criteria for MS (which you can read about on this site). Since your spinal fluid doesn't support that part of the criteria, the other way to confirm "time" is by your history and a careful neurologic examination. Another aspect of the diagnostic criteria is to rule out mimickers of MS. Sometimes, an HLA-B27+ result can indicate Neuro Behcets disease (but only in the appropriate clinical setting and confirmed by the neurologist). 

In my opinion, it is best to get additional opinions from fellowship trained neurologist in MS (also known as a neuroimmunology fellowship). This training provides additional experience in differentiating mimickers; although, sometimes, the diagnosis is elusive.

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

Here is My Question:
Does increased humidity cause dizziness? My vision isn’t blurry right now. I have relapsing remitting MS and have been having dizziness mostly in early part of the day for few days off and on. Temps have been in 80’s with high humidity lately .

I have h/o ocular migraine.

Answer:
Climate and weather related factors can influence symptom s in MS, however given history of migraines, I suggest to consider aggressively treatment migraines as it is a stronger probability that weather is impacting migraines. If not familiar, I suggest to consider using CGRP blockers as a preventive treatment for migraines
 
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:
If I had Covid 19 in February, and an infusion of Ocrevus in June, would the latter have made me unable to create antibodies to the Covid?

Answer:
COVID 19 antibodies are created within a month of infection, if not sooner. An infusion of Ocrevus many months after the the creation of these antibodies will not affect antibody titers or responses. Antibodies are created primarily by plasma cells which, do express CD20 on their surface, and therefore are not directly destroyed by Ocrevus or other anti-CD20 therapies.

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 think I had Covid 19, and my antibody test came out negative, is it possible that the Covid virus might just hang around in my body since my B cells have been depleted by Ocrevus?

Answer:

COVID 19 Antibody testing

A recent Cochrane review (this is a specific type of analysis of multiple studies) reported that the rate of COVID19 positive antibody results 1,2 and 3 weeks after a known COVID19 infection onset was 30 %, 70 % and 90 % positive, respectively. More recent studies suggest that antibody responses wane over time, but a large study from NYU showed that antibody responses are still detectable in 90 % of people for more than 3 months. Generally, it appears that antibody response may drop more rapidly in people with mild infections. In these cases it is likely that a negative antibody test results occurs because the level of antibodies drops below the lowest level of detection NOT because there are no antibodies present anymore.

We have virtually no published data on antibody responses to SARS-CoV-2 in people with different levels of immunosuppression, either naturally (i.e. though aging) or as a result of medical therapies (such as Ocrevus). 

So how does this relate to the COVID 19 virus lifecycle in your body? With mild infections the virus is not detectable in respiratory secretions after 10 days and with more severe infections it is usually not detectable after 20 days. This is the basis for current isolation recommendations. 

There are reports of a small number of people who appear to recover from COVID 19 and then experience another infection. There are several possible explanations for these reports that researchers are trying to figure out. These cases could represent the same initial infection but with viral and antibody levels falling below the lower limits of detection before re-emerging.  Alternatively, these cases could represent viral dormancy and latent infections. This is a common mechanism of viral persistence in the host, whereby the virus remains dormant (not reproducing) in certain cells (often in the nervous system) and later becomes reactivated. Think of the chickenpox virus (varicella) laying dormant and later getting reactivated to cause shingles as an example.

Hope this helps

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:
Why do I have to be off Tysabri for at least 8 weeks before beginning Ocrevus?

Answer:
You do not have to be off of Tysabri for 8 weeks before you start Ocrevus or any other anti-CD20 monoclonal antibody therapy.
You only need documentation that there is no evidence of symptomatic or pre-symptomatic PML before you start Ocrevus. Usually an MRI scan of the brain is sufficient to document an absence of early PML. Once this is done you can start Ocrevus. If there is any question or doubt after an MRI is done, we usually do a lumbar puncture to sample CSF to make sure there is no evidence of PML before you start ocrevus. In most cases we are able to complete this evaluation and start Ocrevus in less than 2 months. In no case should you start ocrevus until a repeat MRI scan has been done to exclude early PML.

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:
My bad leg which is the right one turns purple and black is now very very cold to the touch..it feels like it has been in a meat locker.

Answer:
Chronic red-purple, cold legs after injury to the spinal cord from a disorder like MS, especially when it primarily involves the feet (or the distal limb) and always the weaker limb, is usually caused by a condition called secondary acrocyanosis. The discoloration and decreased temperature to touch is a result of impaired regulation of vascular muscle tone in the capillary blood vessels. Essentially, the capillary arterioles constrict and the venules dilate causing both the cold temperature to touch and the persistence of deoxygenated blood (blue to purple) in the capillary vessels. This is a harmless process often associated with swelling and increased sweating in the discolored limb. 

This is to be differentiated from a limb, or part of a limb, that suddenly becomes white followed by blue or purple or even black with pain and coldness to touch from an sudden loss of blood flow. This is an acute emergency.

​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 long can you take Tecfidera?

Answer:
There is no limit to the duration of Multiple Sclerosis treatment with Tecfidera or Vumerity, both related fumarates. As with any therapy, the decision to continue treatment depends on continued efficacy and whether you develop contraindications to treatment or experience side effects or alterations in monitoring labs that lead you and your MS specialist to decide that a change in treatment is warranted.

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:
Can MS cause secondary scoliosis?

Answer:
MS can certainly cause secondary scoliosis. This usually takes many years if not decades.
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​Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego