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

Mar 21, 2008

Editor:
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.)


Categories: A1c Test, Blood Sugar, Diabetes, Diabetes, Insulin, Letters to the Editor



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Comments

Posted by Anonymous on 22 March 2008

What is reported here is not a cure! The son is simply just going through what is called the honeymoon period, known to anyone who is a type1 diabetic. This insulin free period usually lasts for 4-18 months after which her son will be needing regular insulin injections for the rest of his life.

Posted by Anonymous on 23 March 2008

How do I find out more? my son is type one for the last three years.. I would like to explore about Teplizumab

Parent

Posted by Anonymous on 24 March 2008

Nice story, but surely as a nurse you must know that there is a good chance that your son is only in his "honeymoon" period? The drug given is nothing other than a immunosuppressant. It's nice to get your hopes up, but there is no reason to assume this is anything other than a (possibly prolonged) honeymoon. These drugs are so toxic and with serious side effects that they will never be a long term solution or a cure, in my opinion. Sorry, but I think you are being too optimistic because you're his mother. As a nurse, I suspect you know better...

Posted by Anonymous on 24 March 2008

My son was also diagnosed in Aug 2007 and has recieved Teplizumab as part of the Protoge study. He has not been "cured" as your letter of the week asserts. Without basal and bolus insulin his blood sugar easily increases to two or three time normal levels. He has however remained in the Honeymoon phase now for almost 5 months. To date we have not needed to increase his insulin dose significantly and this has allowed us to control his blood sugar with relative ease since his body is still able to make insulin.

We are about halfway through the clnical trial and are still hopeful that my son's condition will remain as it is for as long as possible. Currently the progression of his type 1 diabetes appears to have stalled or slowed down but not reversed.

Posted by Anonymous on 24 March 2008

I found myself excited to read your letter until I realized that your son was diagnosed in August 2007 and hasn't received insulin since November. My son was diagnosed in 2003. We started giving him insulin and a few months later we had to slowly decrease his insulin to the point of no insulin at all. He did not need insulin for nearly six months as he was in a honeymoon stage. I was hoping he was cured and that his diagnosis was just a mistake. But unfortunately his insulin need did come back and his honeymoon stage ended. I hope I am wrong for your son's sake and the sake of all the other children with type 1. But I am skeptical due to our own experience.

Posted by Anonymous on 26 March 2008

First want to say grats for the good news about your son. Can't a honeymoon period last for a year or more? Even so, it is great that it has extended his HM period at the very least. My son is out of his HM so taking insulin fulltime but of course I am super interested in hearing and researching this more.

About postings here: "these drugs" (are there more?) and "serious side effects" can you elaborate?

Posted by Anonymous on 26 March 2008

Have a happy honeymoon... but use that time to regroup and be prepared for the inevitable.

Posted by Seymour on 27 March 2008

I wish we could get past the many years that we have to wait to recieve treatment with drugs that we pretty much know work, we just don't know the details of the side effects. We should be able to release the medical professionals from liability in some way and thus allow the patients to gain some relief at their own risk.

Why am I not suprised that your doctor was not really interested in your happy outcome. He now has one less patient to worry about, one less person to watch suffer with diabetes, why should he care? Some people are just insensitive, some of those are doctors.

Posted by Anonymous on 27 March 2008

Just be careful is all I am thinking. Keep monitoring because I like others think this is the "honeymoon phase". The doctors I have spoke with show no interest in new developements in diabetes. They have no interest whatsoever. The best thing is just to keep watching and be careful of side effects. If something seems too good to be true it probably is. I am seeing a good doctor right now but he is handling my diabetes the traditional way. Diet and montioring my insulin usage. The good thing is I no longer have severe low blood sugar reactions. You as a nurse should know until more proof is shown be careful with your son. This is the most important thing.

Posted by Anonymous on 27 March 2008

I'm a little sceptic. It seems like he was diagnosed as type 1, but probably he's type 2. Therefore once he started with the correct nutrition, the situation became better, without necessity for insulin injections. Of course I cannot be sure, but that's a possibility (see also Halle Berry case - similar situation)

Posted by Anonymous on 27 March 2008

To anonymous on 24 March 2008:
Did your son get some type of adverse reaction to the treatment? I ask because as a trail, there is a placebo group. Most of the time it is 50%. Most of the subjects that get the drug have some kind of reaction, sometimes severe, like the one that occurred to Denise's son. So I was wondering if you kind of knew if he did get the drug or a placebo.

Posted by Anonymous on 27 March 2008

Eli Lilly has launched its regular assault on any drug that cures diabetes. 32 billion is made per year, 32 Bs per year as of 4 years ago that is, on diabetes treatments.

And so lilly bought the drug. Nice. Good Job Lilly. Buy anything that may cure type 1. Then bury it in a hail of poo poos. Oh yeah baby keep the money flowin'!!! Go Lilly.

Posted by Anonymous on 27 March 2008

A previous poster said "These drugs are so toxic and with serious side effects that they will never be a long term solution or a cure", and I've heard this before: but it is always vague.

Can someone tell me exactly what are the side effects or toxic reaction for Teplizumab? It got through phase-1 trials, so someone must know something about how safe (or sunsafe) it is! I really like to hear a specific statement (like N% of users got M horrible side effect), rather than just some vague statement of doom......

Posted by Anonymous on 28 March 2008

Hi Seymour - You missed another factor: the pecuniary one. Need I say more?

Mike

Posted by Anonymous on 29 March 2008

I was appalled by the condescending and paternal tone of “anonymous” (letter #2). His (or her) final statement “I suspect you know better” was unnecessary and typical of the bad manners of some health care personnel who think they have a corner on objectivity while they possess a complete ignorance of the manifest emotional damage and downright unhappiness wrought by pessimism and negativity. He used the words like one uses a sword – to injure.

This is not constructive criticism, only personal attack and haughty condescension like a parent with child. This RN has a most valuable view, a perspective none of us envy, nonetheless valuable for every health professional to read. I say, let us be so humble as to learn from it. Anonymous ironically provides typical example of the rudeness and insensitivity of what the RN points out - poorly behaving “professionals.”

We can only hope this critic is not a physician - A pompous ass who lectures of false hope to justify the callous delivery of no hope at all. The modern physician will consider the holistic approach to physiology – mental health as well as monitoring blood sugar, diet as well as medicine. Perhaps the RN makes a sore point by exposing, righteously in my view, professional arrogance and bad bedside manner. Hope is only false when it does damage, but even false hope does less damage than despair.

The RN has good reason to hope – her son has been insulin free for a protracted period. It is clear from the text that this mother is in not in denial. Her actions show us that she is thorough and consistent in monitoring and documentation. Is it possible he is cured? . . . Absolutely not says the omniscient, the all knowing, and the narcissistic. Thank God that those who invent cures do not possess the cynical attitude of anonymous. He chides this RN by virtue of an assumption of what the treatment she describes really is. Would Johnson & Johnson pay 200 million for a simple immunosuppressant? I don’t think so. Would you put this guy in charge of research?

My opinion is that regardless of whether this is a cure or not, those of us who believe in the power of positive thinking know that it works. All of my professional life I have witnessed the awesome power of positive thinking. Conversely, I have seen the devastation of the negative - the just give in loser attitude that anonymous represents.

The dream we share is that one day a cure can be found for this horrid disease. Yes, we have hope that a new generation will not have to bear the callousness of cynics who cannot imagine a world without diabetes, people who find bad things in dreams.

Posted by Anonymous on 31 March 2008

I am surprised by how so many people have a comment on something they know nothing about.
I am an RN and I know that being diagnosed with Type 1 is devasting. The honeymoon period can be prolonged BUT you still need insulin!!! He was not missed diagnosed. The study has many test that are done to QUALIFY. He is not a Type 2. How dare anyone dash the hope of anyone. I truly believe that this study is cutting edge and that he will stay off his insulin.

MY MOM ALWAY SAID, IF YOU DON'T HAVE ANYTHING NICE TO SAY THEN DON'T SAY ANYTHING AT ALL.

Posted by Xerelda on 4 April 2008

I understand that most non-diabetics have and A1C of 4.5 or somewhere close to that. An A1C of 5.6 with average glucose of 100 is pre-diabetic by some standards.

Posted by mgordon on 6 April 2008

I am soooo elated for you. I wish this was available 35 years ago when I was diagnosed. The longer he makes insulin the better.

Posted by Anonymous on 7 April 2008

My daughter was diagnosed with Type 1 on August 26, 2005. She was 10 years old, 4'11" tall and weighed 105 pounds. I learned from a family member of a clinical trial being conducted by the Immune Tolerance Network using the predecessor to Teplizumab (hOKT3). My daughter received her first treatment in October 2005. She did not have any adverse reactions to the drug so she received the full 14 day treatment and was scheduled to receive the second treatment one year later. Due to an adverse event (minor, but unspecified) in another trial using the same drug, the trial was suspended in October, 2006, so my daughter did not receive her second treatment until May 2007. Macrogenics aquired the rights to produce the drug after her first treatment.

For two years after her first treatment, my daughter required very little insulin (4 units of Lantus at bedtime. On special occasions (birthdays and holidays) she might take a unit or two of Humalog. Her A1cs ranged from 5.1 to 5.7. Her doctors frequently commented that her numbers were like those of a non-diabetic (she is, of course, a confirmed diabetic - you have to possess the antibodies in order to qualify for the trail). In the fall of 2007, two years after her first treatment and 6 months afer her second, her dose of Lantus gradually started increasing up to 7 units at bedtime, where it remains today. She currently is 5'4" tall and weighs 120 pounds. Then, abruptly, in late February of this year, her glucose numbers shot up and she very quickly went from needing virtually no fast acting insulin to requiring it with every meal and snack. Her A1c also jumped from 5.7 to 6.5 in three months.

We have known from the start that this drug was probably not a cure (it has been in trials -here and overseas- for more than a decade. However, we thought that if our daughter's honeymoon period could be extended, especially through puberty, her diabetes may be easier to manage for a prolonged period of time. For two and a half years, we have had a relatively easy time managing her disease and I am very grateful for that. Although my daughter must take insulin with every meal now, her insulin to carb ratio is 1 to 20 which I understand from her doctor is very low given her size, growth and stage in adolescense. I would highly recommend a trial with this drug to anyone whose child has recently been diagnosed with Type 1 diabetes. I also cannot say enough positive things about the principle investigator for my daughter's trial, Dr. Kevan Herold, and his support team at both Columbia Presbyterian Hospital in New York, NY and Yale New Haven Hospital in New Haven, CT.

Posted by Anonymous on 17 April 2008

A Clinical Trial for the use of this drug is being done in Chattanooga TN at University Diabetes & Endocrine Consultants.

Posted by Anonymous on 30 April 2008

I have type 1 diabet for 2 years ,im 25 year old , but i cannot try a trial because im from another contry , so im reading this post.
I'm wondering if there will be some drugs in near future , im still using insulin for now.
i will be happy if the will be some drugs till i get 29 years old

sorry for my bad english

Posted by ile on 30 April 2008

I have type 1 diabet for 2 years ,im 25 year old , but i cannot try a trial because im from another contry , so im reading this post.
im wondering if there will be some drugs in near future , im still using insulin

i will be happy if the will be some drugs till i get 29 years old

sorry for my bad english

Posted by Anonymous on 2 July 2008

My son was diagnosed in October 2007 with Type 1 and started the trial with Teplizumab in Dec 2007 (six weeks later). He had a mild rash and temperature for a day or 2 during the infusion. His liver enzymes increased but went down quickly - not high enough to exclude him from the trial. He had been taking 10 units of 50/50 humalog/humalin and went down to 3 units after the infusion. That is 1 and half units of long acting insulin morning and night - and 1 and a half of the fast acting morning and night. In May he was diagnosed with celiac disease and we dropped glutin from his diet. His weight shot up 6 pounds in 6 weeks and his insulin increased up to 4-5 units of long acting ang 4-5 units of short acting morning and night. He is about to have the 2nd dose. We remain hopeful that he will have reduced need for insulin, as it does make it much easier to manage. I would just like to combine this with a beta cell regenerator. That would be a cure!

Posted by Anonymous on 8 October 2008

My son who is 15 was dx on May 29 2008.He was takin 18 units of levmer at night and novlog at meals,his a1c at firt was 9.5.And his sugar was 495 at the time he was dxed.
He then went to a a1c of 9.00 and then 6.5.
He is now off of any insulin at all .nothing
And its been 2 months . He will still get lows ,like 40's or 50's . But for the most part it has been running normal .We were thinking that maybe they were wrong about the dx . But they have assured us that he is a type 1 .So we still keep close check on it .They have told us its the Honeymoon phase. I dont know how much longer it will last. Im sorry ,but as i read your letter it sounds like he is in the same stage that my son is going though too.I do hope for a cure very soon for every child with this diease.

Posted by Anonymous on 29 October 2008

Dear Dennis,
Could You please let us know how is Your son doing now. What are his insulin doses (if any?). Would You now advice other parents to decide as You did?
Best regards.

Posted by Anonymous on 9 December 2008

My daughter's doctor considers her a brittle type 1 diabetic, because her sugars are so out of control. Everytime we think she is on the right track, her sugars will either jump sky high or drop to almost fatal lows. I am curious if she would qualify for any clinical trials??

Posted by Anonymous on 16 March 2009

It is now March 2009. I wish Denise Smith would write again to tell us how her son is doing.

Posted by Anonymous on 18 March 2009

Just Google: Denise teplizumab , and her blog shows actually in the first search page. You can get and update there. Spoiler: Doing great.


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