Letter of the Week: Experimental Drug Has Cured My Son of Type 1, Says RN

My son was diagnosed in August 2007 with juvenile diabetes. I am a registered nurse and was devastated by the diagnosis because I was just completely paralyzed by the fear of potential complications. It was also a tremendous shock to be on the other side of health care – receiving information from hurried staff, including doctors, glancing at their watches while I asked one too many questions.

I, like the author of one of your articles this month, did a lot of research online and everything else I could read on the subject.

Eventually, I found out about a clinical trial by a company called Macrogenics, backed by the JDRF (Juvenile Diabetes Research Foundation) of an experimental drug for new onset diabetics that blocks the autoimmune attack.

After a tremendous amount of prayer and research, we decided to go ahead: My son took the drug, Teplizumab (MGA031). The drug was given via IV, and he was supposed to take it over 14 days. He only made it to eight before his liver enzymes tripled and he was pulled from the study. His enzymes returned to normal shortly thereafter.

I am writing to tell you that my son has not had to use insulin since November 27. Almost four full months insulin-free. No regular, no long-acting – nothing. (He was taking 17 units of Levemir at night and about 10 units of regular a day).  We still take his blood sugar at least four times a day and we are careful about carbs (sugar, white flour especially). His last A1c was over two months ago and it was 5.6%.

He is still being  monitored by Dr. Chayim Newmark  (sub-investigator) and goes in for the required study follow-ups. His average blood sugar now is 100.   His pediatric endocrinologist is, for some unknown reason, completely uninterested in the results of this study.

As I understand it, this drug has been purchased by Eli Lilly and more clinical trials will be conducted.  The reason I am writing is twofold: 1) To share my excitement and this good news with someone in the field; and 2) to try to get the message out that this drug worked, and worked extremely well.

I believe that my son has been cured, I understand that all of the proper work must be done to make sure that this drug is safe, but I feel it is important to get the word out otherwise and was hoping for your input on this matter.

With much appreciation for the work you do,
Denise Smith

(Editor’s Note: Readers, have any of you or people you know had experiences with Teplizumab? If so, we’d like to hear from you.)

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