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Treatment

How is MG treated?

MG can be treated with drugs, surgery and other therapies – alone or in combination. Treatment decisions take into account the severity of your disease, which muscles are affected, your age, and other associated medical problems.

The goal of MG treatment is to remove antibodies, reduce antibodies, and inhibit the binding of antibodies through the various medications and treatments available.

There is no known cure for MG, but there are effective treatments that allow many people with MG to lead fulfilling lives. Common treatments include medications such as Mestinon® (pyridostigmine), immuno-suppressants including corticosteroids, Cellcept® (mycophenolate mofetil), Imuran® (azathioprine), cyclosporine, methotrexate, cyclophosamide, Rituximab and treatments such as thymectomy, plasmapheresis, and intravenous immunoglobulin (IVIg) infusions. Spontaneous improvement and even remission may occur without specific therapy.

A well balanced lifestyle inclusive of adequate rest, physical activity and movement, good mental hygiene and a healthy diet  is essential to achieving the best outcome.

Please see Pages 11-17 of the Information booklet for additional explanation of these drugs and treatments.

What is a thymus gland?

The thymus gland lies in the chest area beneath the breastbone and plays an important role in forming the body’s normal immune system during childhood. The gland is composed of two main lobes and is shaped like a butterfly over the windpipe. It is somewhat large in infants, grows gradually until puberty, and then gets smaller and is replaced by fatty tissue as a person ages. In some adults with myasthenia gravis, the thymus gland is abnormal and remains large and active.

The relationship between the thymus gland and myasthenia gravis is not yet fully understood. Scientists believe the thymus gland may give incorrect instructions to developing immune cells, resulting in the production of unwanted antibodies.

Some people with MG develop ‘thymomas’ or tumours on the thymus gland. Generally, thymomas are benign, but in rare cases they can become malignant. When a thymoma is discovered, surgery is performed.

Surgery can be performed in several ways. The surgeon will discuss the optimal method to be used. An open chest incision may be recommended for good access or an endoscopic method which has an easier recovery period may be suitable. Some centres can now offer robotic surgery for this procedure. Reference page 14 of the Information booklet.

A longitudinal research project conducted in the United Kingdom with papers published in 2017 indicates that thymectomy is helpful in reducing required treatment levels. It did not highlight an increased rate of remission. It suggested that if thymic tissue is present, removal may be considered in patients up to 60 years of age.

Can you refer me to a specialist in myasthenia gravis?

MGAQ cannot provide referrals for liability reasons. In general, we suggest that people see a neurologist who has a particular interest in Myasthenia. These Specialists will have the greatest amount of experience. Your GP will help you with this process.

Are there medications a person with MG should not take?

There are certain drugs that people with MG should avoid or only use with caution.

There are many medications that people with MG should avoid or only use with caution. These are drugs known to potentially make MG symptoms worse.

It becomes a case-by-case management of ‘benefits versus consequences’ and these decisions need to be carefully managed by your Doctors. It is important that the patient flags the concern each time a new medication is introduced and then is vigilant in reporting back to the medical team. Certain antibiotics, beta blockers, anti-arrhythmic drugs, calcium channel blockers, some cholesterol lowering medications, anti-rheumatics such as quinine, potentially some anti-convulsant, psychiatric and anti-spasmodic medications, general anaesthetics and muscle relaxants, plus magnesium products all need to be used with caution. Botulinum toxin is not recommended and live vaccinations, some X-Ray contrast mediums and narcotics should be used with extra caution. You should always discuss these concerns with your treating doctors, and in particular, with your Neurologist. The Doctors will evaluate the management required.

Do make sure all your Health Professionals know every drug you are taking, including over-the-counter medications and nutritional supplements. Your pharmacist may be another good resource.

For more information on the ‘Drugs to be Used With Caution in Myasthenia Gravis’ please refer to the Resources section of this website where this information is readily available to everyone including health practitioners. Do note that the Myasthenia Alliance Australia Medical Advisory Board has collated the clearly outlined guidelines for greatest assistance to Australian sufferers and their supporting Health Professionals. Refer also to the Information Booklet pages 17 and 18.

Be sure to check with your primary MG doctor before taking any new prescription medications or over-the-counter medications and supplements.

Can people with MG receive the flu shot?

Medical decisions should always be discussed with your doctor. As the flu shot is not a live vaccine, it is not strictly forbidden for people with MG; however, there may be some instances in which the vaccine is not advised.

Should I wear medical alert jewellery? What should it say?

Many Myasthenia patients make a personal decision to wear medical alert jewellery such as a bracelet or necklace. At a minimum, a medication card in your wallet or purse should clearly indicate “Myasthenia Gravis” and include your name, date of birth, a family member telephone number, MG doctor, and medical conditions. The Association provides for the members, upon request, a Medi-Alert Wallet sized card inclusive of the Drugs to be Used With Caution.

It is a very handy tool for your doctor to have a short list of drugs to be used with care.

How do I get the most value from my visit to the Specialist?

Preparing for your appointment:

You're likely to start by first seeing your General Practitioner or Optometrist who is then likely to refer you to a Specialist such as a Neurologist for further evaluation, possible treatment and regular monitoring.

Because there's often a lot to talk about at your appointments with Doctor, it's a good idea to be well-prepared for each appointment.

Here's some information to help you get ready for these appointments.

Write down symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.

Keep a diary of symptoms experienced, activity levels, medications taken and results experienced. Make a summary of what has occurred since your last visit.

Bring a list of all medications, vitamins or supplements that you're taking.

Write down questions to ask your doctor. Your time with your doctor is limited, so preparing a list of questions ahead of time will help you make the most of your time together. List your questions from most important to least important in case time runs out. For myasthenia gravis, some basic questions to ask your doctor include:

  • Other than the most likely cause, what are other possible causes for my symptoms?
  • What kinds of tests do I need?
  • What is the most appropriate course of action?
  • How long will I feel this way?
  • What are my choices in treatment options and how long until I can expect results from these various treatments? What side effects might I expect?
  • Are there any restrictions that I need to follow? What shouldn’t I do?
  • Is support from any Allied Health Professional (eg physiotherapist, speech pathologist, dietitian, social worker, counsellor) going to be helpful?
  • Are there any brochures or other printed material that I can take home with me? What websites do you recommend visiting?

Importantly, in addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.

What to expect from your doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:

  • When did you first begin experiencing symptoms?
  • Have your symptoms been continuous or occasional?
  • How your symptoms impact your daily activities?
  • What, if anything, seems to improve your symptoms?

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