MOG Antibody Disease (MOGAD) Relapses

MOG Antibody Disease (MOGAD) relapses are one of a patient's biggest challenges. In this blog post, you will learn what a relapse is, how to spot one, and what you need to do in the event of a relapse.

Firstly, I would like to thank Dr. Elias Sotirchos and The MOG Project for reviewing this blog post.

What is a MOGAD Relapse?

A MOGAD relapse is a new inflammatory event with new inflammation due to MOG antibodies. A relapse may also be called an exacerbation, attack, event, or episode. New symptoms do not always mean that there is a new attack. Because of this, it is difficult to spot the difference between recurring symptoms and relapses. ¹

Once the nervous system is damaged, a person may re-experience old symptoms without new damage occurring.¹ This can happen in heat exposure, exercise, infection, fever, and stress.

The presence of new inflammation or lesions using an MRI scan confirms a relapse; however, the lack of MRI findings does not definitively rule out a relapse. In this instance, your doctor must decide using their medical expertise and other testing.²

What is the Relapse Rate for MOG Antibody Disease?

In an observational, comparative cohort study with 66 MOGAD patients, 50% of the patients with MOGAD experienced relapses in the first ten years.³

What is a Pseudo-Relapse?

A Pseudo Relapse is when there is a recurrence of neurological symptoms but no evidence of new inflammation. Factors that can influence symptoms can include:

• Illness
• Infections
• Tiredness
• Stress
• Heat (Uhthoff’s phenomenon)

Pseudo-relapses can sometimes be distinguished clinically from relapses by their fluctuation in severity and improvement over 24-48 hours. Pseudo-relapses will never show any new or worsening lesions on MRI.² Pseudo-exacerbations can be managed or prevented by improving the patient's quality of life, as they often have underlying triggers that may need to be addressed.¹

Why is it Important to Differentiate Relapses from Pseudo-Relapses?

A relapse requires treatment to stop the attack and limit disability.¹ While pseudo-relapses may feel like a relapse, it does not need to be treated the same way due to symptoms improving without treatment.

Relapses may indicate a failure of preventative treatment and a need to change therapy/treatment. If preventative treatment is not stopping MOGAD attacks, it must be changed to another, which might offer more protection.

Knowing the difference between them is essential to prevent unnecessary treatment switching.¹ For example, a patient could receive a preventative treatment that successfully stops relapses. But, if a pseudo relapse was incorrectly identified as a relapse, it may result in the successful treatment being changed to one which could be less successful or require more management.

Lastly, correctly confirming a pseudo-exacerbation helps to avoid unnecessary treatments.¹ In the event of a possible relapse, a patient could be required to have blood tests, a spinal tap/lumbar puncture, and MRI scans.

How to Spot a Relapse

Spotting a relapse is mainly dependent on the patient’s day-to-day symptoms. Relapses can often present as new symptoms; only the patient can likely tell what is new for them. Dr. Benjamin Greenberg presented some general guidelines at the 2022 RNDS to show how the University of Texas Southwestern Medical Centre determines if a patient is having a relapse: ¹

More likely:

• New symptom affecting a part of your body previously unaffected (e.g., different eye), with a symptom which is related to a MOGAD relapse, lasting 24 hours or more (Highly Likely)
• New symptom in a new part of the body previously unaffected, lasting 24 hours or more
• New symptom in a new part of the body previously unaffected, lasting 24 hours or more

Less likely:

Important to mention that these are less likely, but these are still signs of relapse!

• Old symptoms are worsening, lasting 24 hours or less
• Old symptom worsening gets better in under 24 hours

Depending on where a patient fits on this scale influences how they will be treated. ¹

What to do if you think you are having a MOGAD Relapse?

MOGAD relapses may come on quickly. It is up to you to avoid new and permanent damage by addressing the issue quickly.² Call your doctor - If you cannot get in touch with your doctor, we strongly suggest you consider going to the ER or A&E.²

There are several ways to verify that you are having a relapse. Your doctor may recommend one or more of these tests after performing a physical examination, depending on your symptoms: ²

• MRI
• Blood tests
• Lumbar puncture/Spinal tap
• Dilated ophthalmologic examination
• OCT Scan
• Visual Field Testing
• Other physical examinations and cognitive tests.

What to do after a MOGAD Relapse?

Start a Preventative Treatment

Suppose you were not taking a preventative treatment before the attack. In that case, your healthcare professional might consider putting you on a preventive treatment to prevent future episodes.

Change your Preventative Treatment

If you are on medication, you must consider changing it, as it has not prevented the attack. A different preventative treatment could be better at stopping future relapses from happening.

Prepare for Another Attack

Preparing for your next attack is the best way to live confidently and know what to do when experiencing one. Getting family members or caretakers involved in this planning is crucial because you may need help to execute your plan.²

Create an action plan with your doctor's help, which is only for you, your caretaker, and your doctor and is an agreement on how to handle a relapse.² An action plan could include:

• How you interact with your doctor, including the best contact method.
• What will the process be once the plan is in motion?
• A time period in which you can expect the doctor to respond.
• Where does ER/A&E fit into this plan, and how you and your doctor will interact with these medical providers?

Create an ER/A&E plan if you need to use these services in case of a relapse. Being able to inform the healthcare staff in these departments quickly could result in you being treated faster, reducing the risk of damage caused by the attack.

• It will be essential to provide emergency services with an outline of treatment approaches that have worked for you in the past, which would be laid out by your doctor in case they cannot be reached.²
• You would want to include your past medical records, any medications you are on, any relevant tests (e.g., MOG titre tests), and any allergies.²
• Your treating medical doctor's contact information.²