Sticking to a treatment plan for an autoimmune disease like myasthenia gravis can be a challenge for some people. In fact, one study showed that only 35 percent to 65 percent of people were able to follow their treatment plan.

But when you get the treatment you need, you’re more likely to keep your symptoms under control and keep your overall health care costs down. Taking your medications on schedule can help you feel better and improve your overall quality of life.

There’s no one-size-fits-all approach to sticking with myasthenia gravis treatment. Treatment options include cholinesterase inhibitors, monoclonal antibodies, intravenous immunoglobulin, corticosteroids, immunosuppressants, and more. These come in many forms, each with different requirements for taking them properly.

Everyone living with myasthenia gravis will have different needs regarding their daily routines. People who use injectable medications might need something different than those who take their medications orally, for example. The ideas below are designed to help you come up with habits that work for you.

1. Explore Affordable Treatment Options

The first step toward making any treatment easy to stick with is to make sure you can get it. To make the treatments you need for your nervous system and immune system more affordable, there are several options you can explore.

Patient Assistance Programs

These programs, also called PAPs, are designed to give people who don’t have insurance access to expensive medications for low or no cost. They are usually offered by the company that makes the medication. Your doctor should be able to tell you which company to contact. They might also be able to help you get connected to the program.

Some drug organizations provide copay cards for people with insurance, too. These are designed to lower your cost. They’re useful when your medication is expensive even after your insurance pays part of the cost.

Some organizations, like the National Organization for Rare Disorders, have their own programs. You can apply for these separately from any benefits you get from a drug company.

State Programs

Your state may offer help paying for prescriptions. These benefits will be different depending on where you live. You may be able to get more coverage in some states than others.

Alternative Pharmacies

Some websites, like GoodRx or CostPlus, allow you to compare the cost of your medication at different pharmacies near you. That way, you can buy it for the best price. Sometimes, online pharmacies may offer you the best deal. You can usually check these through GoodRx or your insurance company.

2. Make It as Easy as Possible To Take Medications

Consider your needs and design your medication plan around them. Below are some points to consider.

Medication Type

Decide if it matters to you whether your medication is injected or taken orally. If you’re terrified of needles, you’ll probably want to choose an oral option. If your doctor wants you to try something injected, make sure you’re comfortable with that before you agree to it.

Your Energy Levels

Many people who live with myasthenia gravis find that they feel stronger in the morning and have more muscle weakness or experience more symptoms as the day progresses. You can design a medication plan around your energy.

Some people choose to take medications in the morning when they feel like they have the energy to be consistent. Others may decide to take their medications right before they rest or come up with a plan to get more rest so they have the muscle strength to take medications when required. Make sure your meds fit your specific plan and needs.

Medication-Specific Instructions

Some medications may need to be taken at certain times of the day. Others may require you to eat or to have an empty stomach. You may notice that some foods help you feel better after taking medications while others don’t. Some medications may not need to be taken every day but might make you feel tired for a while afterward. Your plan to stick with treatment should include any of these specifics.

Set a Timer or a Reminder

Don’t rely on memory to remember your medications each day. Reduce the stress and guesswork by setting a timer or reminder for when it’s time to take them. This way, you don't have to think about it until necessary, and you’ll be less likely to forget your medications.

3. Make a Travel Plan

If you plan to travel, you’ll need to make sure your medications can go with you. Some medications will have specific instructions for how they need to be stored or transported. You may need to talk to your neurology team or look the medication up online to figure out how to take it with you.

If you need to take liquid or injectable medications with you on a plane, make sure you:

• Tell screening agents what you have and that it’s medically necessary.
• Prepare to place your medications in a bin or a bowl for inspection.
• Remember that anything used to cool your medication, like an ice pack, also requires inspection.
• Have your IV bags or syringes ready to be inspected.
• Tell security if your medication can’t be opened or X-rayed.

If you have IV needles or syringes, you’ll need to make sure you have a way to dispose of them safely, too. Different countries may have different laws about disposal, so you may need to do some research before you leave.

4. Manage Side Effects

Many medications for myasthenia gravis have side effects. These can vary widely depending on what kind of medication you’re taking. In general, make sure you understand what side effects are likely or possible before you start a medication. Then, monitor yourself for those side effects and any other changes regarding your health.

Once you know how a medication affects you, work to manage those side effects. You may need medical advice from your health care providers. Some side effects may require you to take more medication. As long as your symptoms of myasthenia gravis are better, it’s often worthwhile.

5. Be Open With Your Health Care Team

When it comes to finding the right treatment option and sticking to it, you and your neurologist are a team. If you’re having trouble getting the treatment you need every day, they can help you. Here’s how to build a constructive relationship with your medical team.

Be Straightforward

If you’re concerned about any part of your treatment plan for myasthenia gravis, talk to your doctor. This includes concerns about:

• Side effects from medications
• The cost of medications
• Giving yourself injections
• Medications not working
• Anything else that affects your ability to take your medications on schedule

Your doctor can’t address concerns they don’t know about. Sharing your symptoms and issues with your health care team can make a big difference in getting the answers and care you need.

Understand What’s Expected

If you’re unsure about your doctor’s instructions, don’t hesitate to ask questions. You can be straightforward when it comes to getting information about how often you need to take medications, what to do if you can’t take them one day, and whether a certain medication might limit your ability to travel.

Your doctor will be better able to give you medications that work for you when you’re honest with them. They may also be able to help you overcome challenges so you can get your medications easily and take them regularly. Follow up with your doctor any time you have more questions or realize your treatment isn’t going according to plan.

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, more than 1,700 members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Have you figured out how to stick to your treatment schedule? Share your experience in the comments below, or start a conversation by posting on your Activities page.