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Treating Your MG
Know the Choices You Have
Can you think of a time in life when you didn’t Myasthenia gravis
(my-as-thee-nee-uh grah-vis):
have a choice about something? How did that make you feel? Did you feel out of control, angry, system (im-mewn sis-tem).
Can you think of a time when you felt this way and learned that you did have a choice? How did you How do you make choices in life? Do you write down the pros and cons? Do you try to look at how a choice may affect your life and your MG? You may have been relieved to learn that you have choices with your MG. You may have felt that you had better control over your life because Many times having a long term illness like MG can make you feel like you don’t have any choices in life. You may feel like you can’t control your health or how you feel from day to day. Learning about the choices you have for treating your MG can help. It may explain why your doctor has chosen the medicine you take each day. You may better understand what “treating your MG” means. It could help you have a better talk with your doctor about how your MG is being treated and how you feel. These are all good things. Keep reading to learn more about the choices you have and what they mean. In this article you will learn:
• How medicines for MG work in your body • About the types of medicine that can help with the signs of MG • Why taking your medicine just as your doctor tells you is important • How to look for problems (side effects) with medicine you take Why Does Treatment Matter?
How Does My Immune System Work?
The immune system (im-mewn sis-tem) is
the role medicine can play in caring for the body’s defense system. It helps keep you well and fights off germs. Think of it treatment, it just makes more sense. That means you’re more likely to take your medicine the right way and keep all visits Through a series of steps, the immune system can: So why does treatment matter? It matters under control. One of big goal of treating your MG is to get to remission (re-mish-shun).
This is a time where your MG is not active immune system’s troops (different cells and parts) defend you from germs and other things that don’t belong in your With MG, the part of the body that fights off It uses special proteins called antibodies system, gets mixed up. It starts to attack (an-tih-bah-dees) and white blood cells as
weapons to weaken and kill the body’s enemies or “intruders”. talk to each other. This is the reason for many of the signs, like weak muscles, that the immune system gets mixed up. Some antibodies work in the wrong way and attack healthy cells instead of invaders. your MG calm, steady or stable. This keeps keep doing the things you enjoy each day without the weakness or fatigue that is common with MG. Taking your medicine as your doctor tells you is a big way you can help your MG stay in check. That’s a good thing. What Does It Mean?
Cells (sells): A cell is the smallest, simplest thing that can be “alive”. Your body is made
up of billions upon billions of cells working together.
Proteins (pro-teens): Molecules in the body that have special jobs to do. You have many
of these in your body.
Antibody (an-tih-bah-dee): An antibody is a protein whose job it is to fight off infection and
keep you well. Think of it as a soldier in your body’s defense system. Antibodies
search out, find, attack, and then weaken or destroy things that can make you sick.
How Is MG Treated?
Treating your MG may take time. Your doctor may first want to make sure you have no other health problems that need to be treated. Something as simple as an infection could cause your MG to get much worse. You and your doctor may try many medicines before you find what works best for you. You may take different medicines to treat the signs of MG and to keep your immune system under control. There are many types of medicine that can do different things. It is important to know why you are taking medicine so you can decide if it works. Taking medicine can be hard for many people to manage or deal with. It can be a real challenge to remember when and how to take more than one medicine at a time. And, it can be trying when you take medicines and still keep having some of the same problems. You may grow tired of trying to find the right medicine for your body. Stick with it! It’s worth the effort to find what works well for your MG and for you. How Does Medicine Work in My Body to Help My MG?
The medicine that you take for MG can work in many ways. The most important thing to know is that it will work to keep your immune system and your MG calm. But this may not treat the signs of MG that you have right now, like muscle weakness. It’s possible your doctor might give you more than one MG medicine. So what does that mean for you? Ask questions. Make sure you understand what each medicine is for and why you’re taking it. This will help you do a better job of taking your medicine the right way each time. What Questions Should I Ask My Doctor?
Ask these questions when you talk to your doctor about treating your MG.
What is the name of it? What problems should I look for? Are you worried about what to ask your doctor? Use these questions to start. Treating your MG can be tough. You may take many different medicines to help control your MG. Knowing what each one does and why you take it is very important. You can feel better about your treatment if you can ask questions. Make sure that you know what your doctor wants you to do and why it matters. It is ok to ask a question more than once if you need to. What Medicines May Help My MG?
There are many medicines that can help you manage your MG and keep you feeling better. There are three ways medicines can work to help your MG. MG medicines can: • Help nerves and muscles talk to each other –
Known as inhibitors (in-hib-it-ors, these work to boost the chemicals your muscles and
nerves use to talk to each other.This will treat the urgent sign of MG: the weakness.
Most likely, this is the first thing your doctor will try if you just learned that you have
MG.
• Slow the antibody (an-tih-bah-dee) response –
Called corticosteroids (kor-tik-ko-ster-royds), these drugs work to stop your immune
system from making antibodies that keep your nerves and muscles from talking to
each other. Other MG medicines can also slow the attack of your immune system.
This helps keep it calm and lets other medicines do their job of treating the signs of
your MG.
Medicines to Treat Your MG
Inhibitors (in-hib-it-ors)
Treatments to help the muscles and nerves talk to each other
What’s the Name?
What Does It Do?
What Else Should I Know?
Pyridostigmine
(peer-rid-oh-stig-meen)
of acetylcholine in your blood that help Neostigmine
(nee-oh-stig-meen)
other. They treat the signs of weakness, but they do not help your MG. In other Ambenonium
words, they don’t fix the cause of your (am-ben-oh-nee-um)
stomach and works for a longer amount
of time. It is also called Mestinon® (mess-
tih-non). It is the first choice for most doctors when treating MG. But it may not Most patients will see an effect from the medicine within 30 minutes after taking it. muscle weakness just like an It begins to wear off after about 4 hours. Medicines to Treat Your MG
Corticosteroids (kor-tik-ko-ster-royds)
Stop the immune system from making antibodies
What’s the Name?
What Does It Do?
What Else Should I Know?
Prednisone
(pred-nih-zown)
70s to help treat the signs of MG. These used if you have tried inhibitors and did Dexymethasone
(decks-ih-meth-ah-zown)
Prednisone is best started early, when MG is not severe. It may be given in a high dose at the start. It also works for Methylprednisolone
(meth-ill-pred-nih-so-lown) ocular MG. But there is a chance that it
a time after it is started. Your doctor may • Have stomach problems every other day in a low dose with other medicine for MG, patients often have less chance for worsened symptoms and fewer side effects.Studies have found that 3 out of 4 patients with MG have a good response with steroids. These are also safe for pregnant women. Patients using these medicines should eat a balanced diet of high protein, low carbohydrates, and low salt. This can help with side effects, like weight gain. Medicines to Treat Your MG
Immunosuppressors (im-mewn-no-suh-press-ors)
Slow the immune system
What’s the Name?
What Does It Do?
What Else Should I Know?
Mycophenolate
(my-kow-fin-oh-late
that do different things to help slow the (mah-fit-til)
Mycophenolate mofetil is the most widely the medicines in this group. It is given at a dose of between 1.5 g and 2 g per day. system. It can be used with prednisone or medicine may get a type of this along with other medicines to slow the immune system. Azathioprine
(ay-zuh-thy-oh-preen)
easier to come off steroids. It can be used alone. Regular lab tests for liver, kidney, and Cyclosporine
(sy-klo-spor-ren)
This is a medicine that is used often to medicines you’ve tried. It is a long-term effects and is most often used for MG that does not respond to steroids, like prednisone, mycophenolate, or azathioprine. Most patients see results in about 1-2 months. Are There Other Choices to Treat My MG?
Yes, there are other choices that can help treat your MG. Some of these can take the place of medicine, while others work with medicine to control MG. Your doctor will help you decide which choice is right for you. Plasmapheresis (plaz-muh-fuh-ree-sis): Plasma is the liquid that carries our blood cells
through the body. It’s also the part of the blood where the antibodies live.
When the immune system is really mixed up and attacking the body, sometimes it can
help to get it back on track by cleaning the plasma in your blood. This is what
plasmapheresis, also called plasma exchange, does. It can take the antibodies out of
your plasma and put the clean plasma back in your body.
This is used when quick relief of signs of MG is needed. It’s not good for long-term use because it doesn’t stop your body from making more antibodies. IVIG or Intravenous (in-tra-veen-us) Immunoglobulin (im-mewn-no-glah-bew-lin)
Therapy:
Intravenous means through your veins and immunoglobulin is another word for antibodies. You may have had to have an IV put into your arm in the past. This is a needle that slides into your vein and lets liquid medicine get into your body more quickly. With IVIG, an IV is put into your arm to let new antibodies get into your blood. These new antibodies can help slow down the attack from your immune system’s autoantibodies. The way IVIG works to help MG is not well understood. It’s used to treat MG when your symptoms are not being well-controlled by other things. It’s a short-term treatment like plasmapheresis and is not best for long-term treatment. In a study, this worked as well as plasma exchange but had less unwanted problems that can happen after getting treatment (less side effects). Thymectomy (thy-mek-tow-mee): This is a surgery that removes the thymus (thy-muhs) gland.
The thymus gland helps build and teach your immune system when you are young.
Over time it should get smaller and stop sending messages. In some people, this doesn’t happen and it can be a problem. • It is thought that the thymus gland may keep working and send the wrong signal to the immune system. This makes more antibodies, which stop your nerves and muscles from being able to talk to each other. • Surgery does not always help the signs of MG get better. For some people, results can’t be seen until 2 to 5 years after surgery. But, for many people the signs of their MG may get much better or go away. This surgery is used most on people who get MG before the age of 40. What Is My Next Step?
Some of these may be things you have heard or used before if you’ve had MG for a long time. This may all be new to you if you just found out you have MG. Your next step is the same no matter how long you have had MG. Talk to your doctor if you have questions about what you are taking. Are you having problems with your medicine? Does your medicine work well for you? Make sure you tell your doctor. Your treatment can only work as well as you let it. What does that mean? It means that you must talk to your doctor if you are having signs of MG that are not helped by your medicine. It also means that you must take your medicine just the way your doctor tells you. And be sure to tell your doctor if you are having a problem. It’s ok to be honest about this. Your MG is a long-term disease that can change from day to day. This can be tiring. You may be tempted to stop taking medicine when you feel good, but don’t do it. It could make your MG worse. Decide for yourself what is best. It is important to remember that you do have a choice when treating your MG. How do you make good choices? Do you find that when you make a choice you worry about whether it’s the right one? Sometimes you can make a good choice by writing down your thoughts. Do you know the pros and cons of choices you make? How will it change your life or the way you feel? These are important things to think about. Knowing how you feel about something, especially your MG or MG medicines, can help you have a better talk with your doctor, too. Use the box on the next page to write down some thoughts about your treatment choices and how you feel about your MG. Then talk to your doctor about what you wrote. Making The Right Choice
I haven’t really thought about it I know I have a few ideas I’m pretty sure I know what to do I have made a choice. Do you feel like one option is better than information you need to make this choice? Good: _____________________ __________________________ Bad: _______________________ ____________________________ The good things I wrote down The bad things I wrote down Who else needs to know about this: ____________________________ Look back at what you wrote above. How do you feel about it? Do you need more support? Do you need to hear what someone else thinks? Here are a few other ideas: Show this to your doctor and ask more questions. Show this to your spouse, family member, or close friend. Ask for their thoughts. Call your Accordant nurse and get more help on making this choice. My Action Plan
There is much that you can control about your MG. What will you do to help? Put a check beside each item and take this with you the next time you visit your doctor.
Write in other steps you can take that your doctor tells you about.
I will think
Action Items
about
doing this
I will talk to my doctor about the medicine I take for MG. I will tell my doctor about any side effects I have that bother me or any signs that are not helped by my medicine. I will be honest with my doctor if I have trouble taking my medicine or miss a dose. I know that this could lead to a flare. Other Things I Can Do:
Important Things to Remember
• Your MG is a long-term illness that will need medicine to control it. You will also need to see your doctor often for visits. • Your medicine only works when you take it just as your doctor tells you. If you have trouble taking your medicine, be honest with your doctor about that.
Want to Learn More Now?
Call your Accordant Health Management Nurse or go online to www.Accordant.com today! Last Modified Date: July 31, 2011 Accordant Health Services, a CVS/Caremark company. All rights reserved. This article has been reviewed for accuracy by a member of the Accordant Health Services Medical Advisory Team. This information is not intended to be a substitute for professional medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions. References
1. Myasthenia Gravis Fact Sheet. Bethesda, MD: National Institutes of Health, National Institute of Neurological Disorders and Stroke; updated February 14, 2007. NIH Publication No. 99-768. http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm. Accessed May 5, 2007. 2. Nicolle MW. Myasthenia gravis. Neurologist. 2002;8(1):2-21. 3. Elrod RD, Weinberg DA. Ocular myasthenia gravis. Ophthamol Clin N Amer. 4. American Heritage Dictionary. 2000 ed. Houglin-Mifflin; 2000. 5. Merriam-Webster Medical Dictionary [Internet]. [Springfield (MA)]: Merriam-Webster, Incorporated; MedLine Plus [. Available from: http://www.nlm.nih.gov/medlineplus/ency/article/000816.htm. 6. Harrison T. Myasthenia Gravis. In: Ferri FF, ed. Ferri's Clinical Advisor 2007: Instant Diagnosis and Treatment. 9th ed. Philadelphia, PA: Mosby Elsevier; 2007. 7. Who Needs to Ask - Ask Me 3. National Patient Safety Foundation. http://www.npsf/askme3/who_needs.php. Accessed May 26, 2010. 8. Skeie GO, Apostolski S, Evoli A, et al. Guidelines for the treatment of autoimmune neuromuscular transmission disorders. Eur J Neurol. 2006;13(7):691-699. 9. Bhatt JR, Pascuzzi RM. Neuromuscular disorders in clinical practice: case studies. 10. Mestinon (Pyridostigmine) [package insert]. Costa Mesa, CA: ICN Pharmaceuticals, 11. Pascuzzi RM, Coslett HB, Johns TR. Long-term corticosteroid treatment of myasthenia gravis: report of 116 patients 1. Ann Neurol. 1984;15(3):291-298. 12. Viajayan N, Dreyfus P. Steroid therapy of myasthenia gravis. West J Med. 2010;123(2):130-131. http://www.ncbi.nlm.nih.gov/pmc/articles/instance/1129834/. Published 1975. Accessed December 28, 2010.doi:PMCID PMC1129834. 13. Sanders DB, Evoli A. Immunosuppressive therapies in myasthenia gravis. Autoimmunity. 2010;43(5-6):428-435. 14. Prednisone. Myasthenia Gravis Foundation of America. http://www.myasthenia.org/docs/MGFA_Brochure_Prednisone.pdf. 15. Meriggioli MN, Ciafaloni EC, Al-Hayk KA, et al. Mycophenolate mofetil for myasthenia gravis. Neurology. 2003;61(2):1438-1440. 16. Guidelines for the management of rheumatoid arthritis: 2002 Update. Arthritis 17. American College of Physicians. ACP Medicine Web site. Diseases of Muscle and the Neuromuscular Junction. http://www.acpmedicine.com/cgi-bin/publiccgi.pl [available with subscription]. Accessed May 6, 2007. 18. What is IVIG? The Myositis Foundation. http://www.myositis.org/pdf/IVIG%20inservice%20for%20TMA%20mtg.pdf. Accessed April 8, 2011 19. Gajdos P, Chevret S, Toyka K. Intravenous immunoglobulin for myasthenia gravis. Cochrane Database Syst Rev. 2006;2(CD002277):1-19. 20. Thymectomy: frequently asked questions. New York, NY: Myasthenia Gravis Foundation of America; 2010. http://www.myasthenia.org/LinkClick.aspx?fileticket=BIVoreOXJGo%3d&tabid=84. Accessed February 1, 2011. 21. Howard JF. Healthcare Professionals: Clinical Overview of MG. St. Paul, MN: Myasthenia Gravis Foundation of America; 2006. http://www.myasthenia.org/hp_clinicaloverview.cfm. Accessed May 11, 2007. 22. The Ottawa Personal Decision Guide. Ottawa, Canada: Ottawa Hospital Research Institute; 2011. http://decisionaid.ohri.ca/docs/das/OPDG.pdf. Accessed April 12, 2011.

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