When you are diagnosed with a rare disease, unfortunately, there’s rarely a pamphlet in the doctor’s office explaining your disease and its complications. Patients with rare diseases often have to do so much of their own research and advocacy to find information about their disease.
One of the most important topics myasthenia gravis (MG) patients need to know when they get diagnosed is that some medications can have complications. Serious complications. Unfortunately, that isn’t widely known in the medical community, so patients with MG and their doctors need access to this information early on.
Since many treatments can interfere with the transmission between nerves and muscles and cause muscle weakness as a side effect, patients with MG need to be especially vigilant about researching medications and seeking expert advice about those treatments.
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It’s always a little exciting to see your rare disease mentioned anywhere, but when I see MG mentioned, it’s often in side effect lists. It’s important for patients with MG to know why that is and seek out reliable information about drugs that can worsen MG.
Some MG nonprofit organizations have created lists that are guidelines for patients with MG to know about specific drugs and drug categories that can be problematic for patients with MG. The British Myaware foundation has a useful list here and the Myasthenia Gravis Foundation of America has a PDF version of their list here. Downloading a PDF version of these lists is helpful so patients can have access to them even offline. I always have a PDF saved on my phone to refer back to.
Unfortunately, awareness of drug categories can be troublesome for MG because it is limited in the medical community.
Learning about this early in my disease has been a relief, and I try to always have these discussions about treatment risks with doctors whenever a drug is mentioned that is on those lists. I have also found pharmacists to be an important part of my medical team, especially whenever I have concerns about treatments that could worsen my condition.
I talk to the pharmacists at my pharmacy where I get my medications and the pharmacists at my infusion pharmacy who handle my infusion treatments, and I’ve talked to pharmacists in the hospital when I’ve been hospitalized. They know the most about drug complications and how different treatments can affect specific diseases. They have a wealth of information too. I like learning about my treatments and the research involved, so I’ve learned so much from pharmacists over the years.
Some of the treatments on these lists are actually used as MG treatment, which can be confusing for patients. I am actually on a few that are mentioned in these lists that treat my other conditions. This is why patients should know these lists are guidelines.
Each patient and body is different so talking to the experts about treatment and risks is what’s most important. Rare disease management takes a village, and everyone having access to quality disease-specific research and guidelines is key.