Multiple Sclerosis Center - HealthCare Journey for Multiple Sclerosis

Has there been any more research on selective androgen receptor modulators (SARMS) in Multiple Sclerosis?

5/29/2021

Here is My Question:
A question was asked about Selective Androgen Receptor Modulators (SARMS) being used to treat MS patients in 2019. There has been more research and studies done since then and I wondered if we had any progress relating to us MS patients?

Answer:
There are no approved indications for selective androgen receptor modulators and I am not aware of any studies being conducted in Multiple Sclerosis patients

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

Would Kundalini Yoga be helpful for someone with MS?

5/29/2021

Here is My Question:
Would kundalini yoga is helpful for someone with MS?

Answer:
Kundalini Yoga combines the physical benefits of standard Yoga with meditation and mindfulness (generally considered a more spiritual practice than standard yoga) but the extended postures one must assume can be difficult for those with certain physical disabilities. I would recommend learning this technique in a class, preferably one that includes people with physical disabilities that require them to adjust their technique.

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

Is it normal to see rapid improvement after only two weeks on Tecfidera?

5/29/2021

Here is My Question:
Hi, I have been taking Tecfidera for 2 weeks and already have seen an improvement. Is it normal to see an improvement so fast? Thanks.

Answer:
Tecfidera, like all DMTs, do not improve symptoms but help alter the disease course (measured by neurological exam disability scoring, confirmed relapse frequency, and new lesion formation on MRI of the brain). These metrics are determined in the clinic with the treating physician (it is possible to have persisting symptoms while the DMT controlling the underlying MS disease course).

I wouldn’t draw the conclusion that tecfidera (or other DMT) is improving your symptoms. I’d take the ‘win’ that you are feeling better and leave it at that!

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

I have MS and had covid in January 2021...do I need to get vaccinated?

5/24/2021

Here is My Question:
I was diagnosed with RRMS 10 years ago... I had COVID 19 back in January 2021 and it was a long recovery... do I need to get the vaccine... if so, do I need both shots?

Answer:
The CDC currently recommends COVID19 vaccination at least 90 days following complete recovery from a COVID19 infection. Deciding whether to follow these guidelines is complicated in people with MS and depends on the following information:

What are your risk factors for a severe COVID19 infection (i.e. older age, diabetes, heart disease, obesity, immunosuppression ?). Remember, the next time around you could be infected by a more virulent strain of the virus, so you cannot assume you will experience the infection in the same manner the second time around.
What is your current risk of infection based on the current case positivity rate? The case positivity rate is declining rapidly in the US and your risk of infection at present, assuming some residual prior immunity from the initial infection, is probably very low.
Were you significantly immunosuppressed when you experienced your initial COVID19 infection? If you were immunosuppressed, vaccination 90 days following recovery from the COVID19 infection may be necessary to provide the required long lasting immunity.
Are you at risk of harming others with a COVID19 infection? A good example is if you live with an elderly relative or someone with a high risk of infection who cannot get vaccinated for some reason or if you may come into contact frequently with people who may not be vaccinated. This would also be a good reason to get vaccinated now.

Remember, it is possible we will all require booster vaccines in the future regardless of whether your initial exposure to COVID19 was through vaccination or natural infection.
If you decide not to get vaccinated now, stay tuned to any updated information provided by the CDC and local health officials to help with your decisions.

Those who have not experienced a definite COVID19 infection should get vaccinated for the personal benefits as well as the good of society. Remember, this virus must infect humans to replicate and mutate. It is the mutations that cause more infectious and lethal variants to emerge, as we have seen in Brazil and more recently in India. India was doing well in their control of the virus for the first year, other than a minor spike in the fall of 2020, but failed to vaccinate people when vaccines became available. The result is a public health disaster. This could happen anywhere if the infection is allowed to linger in residual hosts (i.e. non vaccinated people).

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

Is it OK to take Tecfidera as I move into secondary progressive MS?

5/4/2021

Here is My Question:
Is it ok to take Tecfidera for protection as I am rapidly moving into "secondary progressive MS" and Ocrevus is not an option as I have breast cancer history! Any advice from you would be much appreciated.

Answer:
There are many options for people in the late relapsing phase of multiple sclerosis, including Tecfidera. We do not provide specific prescribing advice on this site but the following general guidance may be used to help with your decision.

There are no current DMTs approved for established secondary progressive MS. All current therapies are approved for 'relapsing forms' of MS, including those patients with superimposed worsening of their disease AND relapses. This is also called secondary progressive MS with relapses or early secondary progressive MS. These are all confusion designations. Distinguishing between different stages of MS is more art than science, and many experts would disagree on the designation in any individual patient. Most MS experts use a combination of age, risk factors, clinical characteristics, and medical co-morbidities to determine the most appropriate DMT or to determine if DMTs should be used at all. Almost all clinical trials restrict enrollment to those people under the age of 60 (if not 55), so little is known about the benefits or risk of treatment in people over the age of 60.
It is important to establish short- and long-term goals for starting a DMT: what are you trying to accomplish and what risks are you willing to take to achieve those goals? This is something to discuss with your doctor
Once you decide to start a therapy you need to monitor your condition regularly to make sure you are achieving your goals and not developing complications. This monitoring may include collecting functional performance measures on a regular basis and noting them for doctor in a journal, and getting regular monitoring blood tests or MRI scans, if appropriate. For instance, it is particularly important to monitor your lymphocyte count while taking Tecfidera.

Good luck

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

Can someone with MS get a tattoo removed with a laser?

5/4/2021

Here is My Question:
Can a person with MS have his tattoo removed by laser?

Answer:
There is no MS related contraindication to tattoo removal.

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

Is it safe to switch from Tecfidera to Ocrevus?

5/3/2021

Here is My Question:
Is it safe to change from Tecfidera to Ocrevus, I’ve read they are seriously interactive?

Answer:
It is possible to transition from Tecfidera to Ocrevus. The clinician can evaluate through blood testing the status of the patient’s immune system to safely transition.

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

Could the COVID vaccine trigger a multiple sclerosis flare?

5/1/2021

Here is My Question:
Three weeks ago today I got the Moderna vaccine, had chills that afternoon and sweating that night. All was well until this week, Tues. (which was 2 weeks and 4 days after the shot) I had chills in the afternoon and much worse sweating the middle of that night. Again on Thurs. of this week, more chills, but no sweating, and today more chills. I phoned my Dr. and was told it probably wasn't related to the vaccine, maybe a low grade infection, but if it keeps up to get blood work, etc. done. Could the vaccine trigger a flare or something to do with the immune system? Has anyone else had the same problem?

Answer:
About 10% of individuals can get the injection site swelling, rash, and various symptoms. I, in fact, had this reaction with the first dose. The second dose has been reported as more difficult for some individuals. Again, I too had that reaction with Moderna. I would interpret this as your immune system reacting to the vaccine, producing cytokines (protein chemical messengers) that lead to these various symptoms. Some MS patients understand the relationship between cytokines and similar symptoms because they’ve been treated with interferon-beta disease modifying therapies.

While I can’t say that you didn’t have another cause such as an infection of some sort, I would first consider this being vaccine related (or rather your immune response to the vaccine). I also would look at this as evidence that the vaccine is stimulating your immune system in a positive way.

There is no evidence that the vaccine triggers new MS inflammation (we also have lots of experience vaccinating our patients over the years and haven’t seen that concern). However, when your core body temperature rises, that can influence nerve signal conduction which could bring out old symptoms of your MS. Some consider this a “pseudo-relapse” because it isn’t new MS inflammation but simply the influence of heat on nervous system function for a period of time.

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