The High Cost of MG Medication and Care
The medical bills that accumulated during my initial diagnosis and treatment of myasthenia gravis (MG) came to thousands of dollars. Fortunately, I had good insurance, so most of those expenses were covered. Still, my deductibles and co-pays amounted to a lot of money.
I had 2 emergency room visits within 5 days of each other, multiple tests, scans, x-rays, bloodwork, and more at both hospitals. I also had doctor's office visits, and once admitted to the hospital, I was referred to numerous specialists and more tests.
The expense of specialists
Besides the medication and treatments, I’m seeing a specialist, which in itself, is high cost depending on insurance and/or lack of it. The severity of myasthenia gravis and the response to the treatment determines how often we will see our specialist.
People with autoimmune diseases often have multiple autoimmune diseases that require additional treatment, medication, and sometimes another specialist.
Once on treatment, you still have regular visits with the specialists however often they need to examine you. At first, I was seeing my neurologist twice a month, then once a month for a while.
I also had regular visits to my pulmonologist. Fortunately, it was a 1-time visit to the ophthalmologist. My visits eventually decreased to bi-annually then annually.
The cost of treatment
When first diagnosed with myasthenia gravis, the medication I was put on was Mestinon. I don’t remember the exact cost, but I do remember it was very expensive. It was a good thing I had a good paying job then!
The Mestinon didn’t do the trick, so my doctor decided to try intravenous immunoglobulin (IVIG). This was another huge expense. Not only did I have to pay for the hospital room, supplies, medication, and procedure for insertion of the infusion line ... but also the fluoroscopy that was used for placement of the IV catheter. The cost was astronomical!
I had to be visited by a home health nurse to administer the IVIG drug and solution. She administered the medication over about 3 or 4 days. I just about choked on the cost of the treatment and supplies.
Adding more medication
Since the IVIG didn’t help either, prednisone was also added. Thankfully, the prednisone wasn’t as expensive, but as time marched on, the medication and medical costs kept rising.
At one time I was on over 20 drugs, which included over-the-counter medication. Not only did that seem rather dangerous, but it was costly, too!
Some of those drugs were over-the-counter medications that different doctors had put me on. The list included drugs for breast health, brain health, heart health, vitamin D, 4 different medications for my allergies and asthma, and more.
Managing co-pays and out of pocket costs
Over-the-counter medications are not covered under our insurance plan, which meant all the expensive over-the-counter medication was paid for out of pocket on top of the prescription co-pays.
At one time, I was on CellCept, Mestinon, and prednisone. After several months, I was able to eventually drop the Mestinon and prednisone. I was also able to stop all the over-the-counter drugs.
Still, myasthenia gravis medications and treatment are very expensive and isn’t always covered or not enough is covered by insurance to ease the economic burden of the patient and their family. However, there is financial help out there, if you know where to look.
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