[J Schafer]

Hi, my husband was diagnosed with generalized MG some 4 years ago. He was having a terrible time swallowing food and speaking clearly. We did try some IVIG treatments but ran into a problem with our insurance. Also there was no change in his condition, but that might have been due to only 4 treatments. Upon suggestion by his neurologist, we decided to try home subcutaneous treatments. For 3 1/2 years I gave Hizentra to my husband via 6 tiny needles inserting into stomach. The first 2 1/2 years subcues were weekly, then we went to every two weeks, and finally every 3 weeks. As you can guess it made quite a difference in my husband’s mouth symptoms, altho his arms and legs remain weak. We have been very fortunate in that currently my husband feels he is in remission and we are no longer using any Hizentra (with the permission of his neurologist). Even with our insurance, this medicine was very expensive, especially at the beginning of each year. At that time, I was told that this was due to Hizentra not being FDA approved for treatment of MG.

[J Schafer]

A little over 3 years ago, my husband began experiencing problems swallowing and speaking clearly.  There were some days when he could barely eat.  I had to change meal preparation to allow only food that was very soft or liquid.  Over the course of 3 months he lost 60 pounds.  He also stopped talking unless he absolutely had to, because it was so difficult for him to speak and for others to understand.  He seemed like a totally different person.  I though I was going to lose him.

Then he was diagnosed with MG by a neurologist and put on mestinon 3 times a day.  At first it made an quite a difference in his initial problems, but he had terrible diarrhea. Then it seemed to become less effective.  The neurologist wanted to put him on prednisone, but he is also diabetic and knew that would make his diabetes more difficult to control.  He had told the neurologist that he did not want this treatment, but the neurologist was determined that was the protocol to be followed.  We changed neurologists.  At first he tried IV treatments at a local hospital, but we ran into insurance issues.  The new neurologist suggested home subcutaneous infusions of Hizentra every week.  I have never been fond of needles, but learned to give the subcues.  After about 5 weeks, he was able to eat and speak more normally.

In the last year, his neurologist has allowed him to decrease infusions to every other week and just recently to every 3 weeks.  We are so very grateful that the medication has been so effective.  I have had to wrestle with our insurance company since Hizentra does not have FDA approval for treatment of MG, but my husband’s doctor selected it due to fewer complications with his many other medications.  Even with our insurance, the medication has been very costly.  It has been worth it.

He uses a walker due to weakness in his legs, has little hand strength, and tires easily.  How much is due to MG, we do not know.

I live with the fear that MG symptoms will return or become worse.