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Welcome to the Virtual MS Center!

Ask any question you want about Multiple Sclerosis and one of our experts will answer it as soon as possible.
CLICK HERE TO ASK YOUR QUESTION!

I am JCV positive...will a 6 or 8 week dosing interval with Tysabri be OK?

2/25/2022

0 Comments

 
Here is My Question:
Hello, I am JCV positive and have been assured that a 6/8 week interval between each Tysabri is not dangerous as far as developing PML goes, would you agree?

Answer:
You ask for assurance that something is not "dangerous". Dangerous is a loaded term, especially in medicine. We prefer to compare risk with benefit, the so-called risk/benefit ratio and allow people to make their own decision. So here are the facts as we know it.
  1. There have only been 15 cases of PML associated with the use of Tysabri since 2012. PML is now a rare occurrence in individuals treated with Tysabri. There are several reasons for the dramatic reduction in PML cases over the past 10 years. These include better education of clinicians prescribing Tysabri and monitoring people with MS on this drug, reducing the number of at-risk people with MS prescribed Tysabri (especially people with JCV Index > 1.5 or with a history of prior immunosuppression), and extending the dosing interval from 4 weeks to 6 or 8 weeks in people with elevated JCV index.
  2. There is good data supporting extended interval dosing of Tysabri to reduce the risk of PML. A retrospective analysis of US anti-JCV antibody positive Tysabri treated patients from the TOUCH registry compared the risk of PML in people with MS treated every 4 weeks (28 days) to the risk in people with MS treated with extended interval dosing as identified in the last 18 months of treatment (average dosing intervals in this group was approximately 6 weeks). The majority (85 %) of people with MS who were in the extended interval dosing group had already received monthly dosing for at least a year prior to switching to extended interval doing. An updated analysis showed a 88 % reduction in the risk of PML in people with MS switched to extended interval dosing. This study did not determine if extending the interval between infusions was effective.
  3. Several retrospective case control studies reported no significant loss of efficacy when people are switch from standard dosing (every 28 days) to extended interval dosing ranging from 6 to 8 weeks between infusions. Biogen, the maker of Tysabri, announced the results of their NOVA study in August 2021.  This was a randomized, controlled study of 499 people with MS comparing the efficacy of continuing every 4-week Tysabri infusions or switching to every 6- week infusions. There was no meaningful difference in clinical or MRI outcomes between the two groups. Approximately 97 % of patients in both treatment groups remained relapse free after 72 weeks. One patient in the 6-week dosing interval arm of the study developed asymptomatic PML. While the results of the Biogen study have not yet been published in a peer reviewed journal, they are consistent with prior uncontrolled study results. The NOVA study also highlights the importance of continuing to monitor for PML regardless of dosing interval, since the disease is rarely fatal if detected while asymptomatic and confined to one lobe of the brain in people on Tysabri.

Lastly, it is always important to emphasize that all treatments for MS have potentially severe risks. These risks are generally manageable if patients and physicians follow accepted protocols for mitigating these risks. Not adhering to agreed upon dosing schedules, missing visits, forgetting to monitor blood work or failure to monitor MRI scans are all recipes for unsatisfactory and rarely, "dangerous" outcomes.

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

Has anyone had a multiple sclerosis flare after getting a tattoo?

2/25/2022

0 Comments

 
Here is My Question:
Has anyone had a MS flare after getting a tattoo??

Answer:

I am not aware of Tattoos affecting MS in any way except in cases of infection.

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.

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

How to go about stopping an MS drug

2/25/2022

0 Comments

 
Here is My Question:
Due to severe worsening of MS, how does one stop taking Gilenya?

Answer:
You should discuss how to discontinue Gilenya safely with your MS Specialist. The best approach will depend on your particular situation.

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

0 Comments

Is it OK to get my Evusheld injection 3 days before my Ocrevus injection?

2/25/2022

0 Comments

 
Here is My Question:
My Evusheld injections are scheduled 2/14 and my next Ocrevus infusion is scheduled 2/17. Is this timing ok?

Answer:

There is no problem with receiving your Evusheld injection a few days before or after your ocrevus infusion, but it is a good idea to take a few days off between receiving either treatment to make sure any side effects subside before receiving the other treatment. As always, consult with your physician.

Revere P (Rip) Kinkel, MD
Professor 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.
0 Comments

February 04th, 2022

2/4/2022

0 Comments

 
Here is My Question:
I developed foot numbness in 2019 and it went into my hands. Although they felt numb, I could still feel everything. I could still feel pain, cold, hot, etc. It’s 2022 and everything has cleared up except my fingertips which still have a dry feeling. I was diagnosed with MS by just MRI findings of brain and cervical. I later reviewed my own MRI of my cervical to find out I have cervical spondylosis, herniated disc and cervical kyphosis. I’m so confused because I thought spinal disorders must be ruled out before diagnosis. Cervical issues can cause the same symptoms and at times affect the brain as well.

I also had scoliosis surgery in 2006 ( hardware) and suffer from menstrual migraines. My doctor did not give me a spinal tap because of my hardware but my orthopedic suggested I get one.

Otherwise I feel normal and nothing has changed. I’m just wondering if I should get another work up or take the diagnosis? What do you suggest?

Answer:
Thanks for a wonderful question that gets right at the heart of MS diagnostic criteria. You are correct in your feeling that the rush to diagnosis is often inappropriate. Although I cannot say that about your case without seeing you in person and reviewing your case, I can make some useful comments that may help you.

A diagnosis of MS really requires several criteria to be met and that doesn't seem to be the case with you.
  1. First, an individual must experience symptoms consistent with MS. That is a possibility in your case based on your description but certainly not definite. This is where a detailed history and expert examination is helpful
  2. Second, you must have clinical findings of a multifocal process consistent with MS or an MRI scan meeting certain specificity criterion. This is called, "dissemination in space." Again, it is hard to make comments on your case without reviewing the scans. This MRI review should be done by someone with expert experience, either a neuroradiologist/neuroimager or an MS expert proficient in MR imaging.
  3. Third, you must satisfy a concept referred to as, "dissemination in time". This can be satisfied in 3 ways: first, you can experience another problem or symptom affecting a different part of your central nervous system at a different point in time; second, your MRI must show both new and old MS appearing lesions involving different parts of the nervous symptoms. This criterion can be meet on your initial MRI scan if one or more lesion is enhancing or if a definite new lesion develops on a subsequent MRI scan; third, an examination of your spinal fluid showing the presence of oligoclonal bands allows you to satisfy the "dissemination in time" criterion. 
  4. Fourth, other possible causes of your syndrome and findings must be excluded.  These other problems could include findings like cervical spondylosis with compression of the spinal cord.

I hope this helps you find the answers you need.

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

0 Comments

When should I schedule my next Ocrevus infusion and COVID vaccine?

2/4/2022

0 Comments

 
Here is My Question:
Timing for Evusheld, COVID vaccine, Ocrevus...

I followed the guidance here for scheduling my COVID vaccination and Ocrevus treaments.
The next round are further complicated, I was hoping for further guidance in scheduling my next Ocrevus and my 4th COVID vaccine.

Timing info:
- Evusheld. Just had the shots.
- 3rd covid vaccine. End of August
- Ocrevus. Last infusion was mid November.

Thanks!

Answer:

Evusheld (Tixagevimab/cilgavimab) is a combination of two human monoclonal antibodies, tixagevimab and cilgavimab targeted against the surface spike protein of SARS-CoV-2 used to prevent COVID-19. These monoclonal antibodies have been modified to work in a long acting manner and prevent the need for frequent repeat injections. It received emergency use authorization (EUA) on 12/8/2021 to prevent severe COVID19 infections in people unable to mount adequate vaccine responses or unable to receive COVID19 vaccines because of allergic reactions. Evusheld is administered after consent since it has not received full use authorization. This is the same type of authorization initially provided for COVID19 vaccine authorization before full approval was received. 

Evusheld is not a treatment for COVID19 and must be taken before an infection (i.e. preventative). It is administered by two injections during the same visit.

People with MS considered candidates for Evusheld are those on the following treatments;  people with a hematopoeitic stem cell transplant in the last year, those on anti-CD20 therapies (Rituximab, Ocrevus, Kesimpta) within the past year, those on chronic steroid treatments, those receiving Mavenclad or lemtrada in the past year and those on cyclophosphamide, azathioprine or mycophenolate. Medical Centers and geographic locations may have different inclusion/exlusion criteria for receiving Evusheld based on availability and priorities, so do not consider this list hard and fast. It is particularly important for people with MS to receive Evusheld if they are receiving one of these therapies and have other risk factors for severe COVID19 infections (age over 50, hypertension, diabetes, vascular disease, lung disease, obesity)

Evusheld provides protection against COVID19 infection for up to 6 months. It can be taken any time in your treatment cycles. Plasmapheresis is the only therapy that would diminish the effectiveness of Evushelf and should be avoided if possible after receiving Evusheld.

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.
0 Comments

Will Nucala interact with my betaseron?

2/4/2022

0 Comments

 
Here is my question:
I have severe asthma and my question is, will this medication (Nucala) interact with my betaseron? Has any other patient tried this combination? If so, side effects? Any studies?


Answer:
Dupixent (dupilumab) and Nucala (mepolizumab) are monoclonal antibodies blocking the interaction of IL-4/IL-13 and IL-5, respectively, with their receptors. Both are used to treat Th2 mediated inflammatory diseases including atopic dermatitis, asthma and other hyper eosinophilic syndromes. There is, as yet no contraindication for either treatment in people with MS. To oversimplify an issue, there are theoretical concerns that inhibiting overactive Th2 responses with either treatment may activate MS. To date there is only one case report from the University of Rochester suggesting this possibility. That is all the information available currently. 

Both Dupixent and Nucala are contraindicated in people with parasitic infections and some people with MS treat themselves with parasites (Helminths) to try and treat their disease. It would not be a good idea for these people on parasitic treatment with Helminths to take either Dupixent or Nucala.

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

Is it safe to take Flagyl for people with multiple sclerosis?

2/4/2022

0 Comments

 
Here is My Question:
I have RRMS and have just been prescribed metronidazole. It says on the leaflet not to take if I have disease of the nervous system. Am I safe to take these? 

Answer:

There is no contraindication to the use of metronidazole (Flagyl) in people with MS. You shouldn't take this while drinking alcohol and should tell your doctor if you've experienced seizures in the past before taking this medication. A very rare side effect of metronidazole, that can occur in anybody, is the development of cerebellar ataxia (walking like a drunk), dysarthria (slurred words) and occasionally confusion. This usually recovers quickly after stopping the drug

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

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    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.
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