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Letter of the Week: Any More Honeymooners Out There?

Jul 31, 2008

We published Denise Van Sant-Smith’s first letter to us on March 21, 2008. In it she chronicled the story of her young son, who was diagnosed with type 1 in August 2007. Denise, a registered nurse, enrolled her son in a clinical trial backed by the JDRF (Juvenile Diabetes Research Foundation) of an experimental drug, teplizumab (MGA031). After participating in the trial, she wrote to say that her son hadn’t used insulin since November 27, 2007.

She wrote to us a second time to give our readers an update and to ask if anyone else has had similar experiences or knows of someone who has. We encourage you to post a comment below and tell us about your experiences.

July 27, 2008 marked the eighth full month that my son has not used insulin. His last A1c was 5.9%, on July 9, 2008. On August 14th of this year, it will be one year since he was originally diagnosed with type 1. As you know, he was taken off insulin on November 27, 2007, about a month after getting the experimental drug teplizumab. I don't know if it is the drug or not, but others have taken it with good results. It will be interesting to see if they ever get the drug approved and can use it quickly on newly diagnosed type 1s.

I received some negative comments last time I wrote. I want to say that we should all be hoping for a cure and believing that it is possible. Some people believe that hope is dangerous or misguided—that it prevents you from dealing with reality.

I could not disagree more.

Imagine the medicine and products that would have never been created if everyone said it wouldn't work before it was even given a chance. Or if, at the first sign of failure, they quit and retreated, saying how they shouldn't have even tried. Look at the advances in medicine in the last 50 years alone - or even the last 20!
I choose to have hope, and, believe it or not, I can be hopeful and still deal with reality. If for some reason my son starts to need insulin again—while I hope and pray he doesn’t—we will deal with that.

Some people say that what my son is experiencing is a “honeymoon.” I have tried to do research on honeymoons, but there is not a lot of data and it is difficult to find information about the lengths of time. Some people consider a honeymoon a period where very little (or less than when first diagnosed) insulin is used. 
 
I would like to hear anecdotes from people about their "honeymoons" or lack of them, and what they were like, and how much (if any) insulin they used. I wonder if it was different for people who carefully controlled their diet after diagnosis—if that lengthened the honeymoon or caused a honeymoon.


Related Article

Has Anyone Else Reversed Diabetes Complications? If You Have, I Want to Hear From You!

Dec 25, 2008


Categories: A1c Test, Case Studies, Insulin, Personal Stories, Reversing Complications, Type 1 Issues



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Comments

Posted by rushinmom on 31 July 2008

Hi - I would just like to say that I think it is just great that you could do this and that it worked so well for your son. I remember when my son was diagnosed at 11 years old I was stunned and felt like - isn't there something that can be done - someway to stop it? Nobody knew of anything. I am from Canada so don't think there are any clinical trials here - or none that I've heard about. I think it is great that you did this. I wish you all the best.

Posted by Anonymous on 31 July 2008

It really is GREAT news! But I became a diabetic after the use of a Defective antibiotic. TEQUIN was pulled by the maker BMS, because of all the news it created glucose disruptions. Mine was not reversible!
At 47 years old I became a type 1 diabetic!
Most all studies for type 1 you have to be younger then 45 years old. I was out of any study due to age. For 7 years now I keep praying for good news like a new monoclonal antibody to treat this disease! I just wish they would open up studies to older age groups. If I ever win the pending law suit. I would gladly Give most of it away for the ability to be part in such a study. My life has changed thanks to Bristol Meyers Squibb and the import of a drug they knew to be defective! Their deception to the FDA and all the fraud with the fines they have been paying should speak loudly that they only are full of greed and contempt. The FDA should close them down. There are so many honest companies who would do a better job.
TYPE 1 Diabetes drug induced, thank you Bristol Meyers Squibb, all I had was a sinus infection and you gave me so much more!

Posted by Anonymous on 31 July 2008

I am a little infuriated with this news. How about those that have Type 1 for over 20 years??? As teplizumab is only being used for the newly diagnosed Type 1's. What are we the has beens where there is no immediate hope????

I have been shackled to this horrible disease for nearly 20 years with multiple injections as I am watching my youth passing me by. This is is completely UNACCEPTABLE!!!!

Posted by trmom on 1 August 2008

Our son's endocrinologist tells us he's still in his honeymoon period 14 months after having been diagnosed on May 29, 2007 at the age of 15. In July, his A1c was 6.3%.
His specialists tell him to continue caring for himself as he is in the hopes this will continue, but up to this point, no one has recommended any trials for him to participate in. We would like to know if there are any trials or upcoming trials on the west coast for someone like him or if anyone has any other comments/suggetions.
For nearly a year, we operated around 60 grams of carbs at each meal, as recommended by his initial nutritionist, based on his age and size. He was allowed 15 grams of carbs for a snack between breakfast and lunch and 30 grams of carbs for a snack between lunch and dinner and then the same for his pre-bedtime snack. He only covers his snacks if he's especially ravenous (or out with friends) and wants more than 15 or 30 grams carbs.
This has seemed to work out well for him. He's now 5'-10" and weighs 146 lbs. Over the last couple of months, he occassionally seeks out more carbs, presumably when he's going through another growth spurt, or when he's running. His current nutrionist encourages him to continue his style.
He uses Humalog and Lantus pens and hasn't shown any interest in the pump. He adjusts his insulin units now on his own as he sees fit.
We share the same emotions as your previous post...stunned and seeking out something that could be done. We received a crash course in diabetes and tried to absorb everything that was thrown our way amid fear and confusion to manage this in the right way.
Our son is the true hero in all of this. We may provide oversight, support and suggestions, but he is the one who is determined to continue on with his life in the best way possible.
Our best wishes that your son continues down the path he's on.

Posted by Anonymous on 1 August 2008

I was also diagnosed as an adult after the use of an antibiotic; I'll have to check if it was TEQUIN. It has been 1 1/2 years and I am still in the honeymoom phase. I take about 1/2 to 1/3 of the insulin the doc says I should for my size. Best wishes to you.

To the person who's INFURIATED. These studies are only open to newly diagnosed people b/c they still have beta cells left to salvage. Unfortunately, after 20 years with diabetes you probably don't.

Posted by Anonymous on 1 August 2008

I think it is a blessing that your son is doing so well and I wish him the best. I am on insulin and it is difficult to deal with in my 30's so I am glad your son doesn't have to deal with it at a young age. If people are commenting that they are upset then that is their problem. We should be encouraging one another and supportive when something good is happening. Don't knock someone else's blessing because you could miss out on yours.

For one of the previouse comments-Just because this works for him doesn't mean something out there will not come along to work for those us of that are still medicating ourselves. Maybe more positive thinking and positive support is whats needed then thinking of yourself as a "has been" or "shackled to this disease" You are creating your own misery. We all have bad days but you are letting them out way the good. If you have had diabetes for almost 20 years then you must be doing something right.
Be thankful for that.

Posted by yvon97 on 1 August 2008

I think it is great that your son responded well to the study drug. My son is 11years old and had an extended honeymoon (about 8 months from the time of diagnosis). I don't think people should be negative toward you; you just may have found a possible cure. If we don't try new things how will we make things better for our kids. Good luck to you and your family. Diabetes is a hard disease for children (and families) to deal with.

Posted by Anonymous on 1 August 2008

For the trial with Teplizumab, the information where to get it is in these links:

http://www.clinicaltrials.gov/ct2/show/NCT00385697?term=teplizumab&rank=2

http://www.clinicaltrials.gov/ct2/show/NCT00378508?term=teplizumab&rank=1

Get in contact with any of them by mail, they really do answer. Only 500 or so places available.

Our son got into the clinical trial 2 weeks ago, and though there has not been super impressive results so far, twice he ate a lot (before taking the drug this would shot his G to 400+), and now it hasn't go beyond 250. And keeping his values around 100-150 is now very easy and effortless, compared with before when we were struggling to keep him at the good values.

Denise, I don't think your son is honeymng. I believe there is something in the treatment and you are experiencing what will be the future of the disease. By the way, it was your letter who inspired us to get into the trial. Lots of thanks for that and kind regards for you.

Posted by Anonymous on 2 August 2008

I was diagnosed with Type 1 three years ago at age 45. It was caught early and I was just barely over the threshold for diagnosis. (A1C 6.0) I didn't have to go on insulin for two years, although I did take Avandia. I watch my carbs, keeping them to about 70-80 grams per day. I take supplements too. Now that I'm on insulin, I only need 7 units of Lantus a day. I don't even take a fast-acting insulin. My A1C has always been under 6.0 since diagnosis. So I guess you could say I'm still honeymooning.

Posted by Anonymous on 2 August 2008

I’m at work and don’t have a lot of time so I’ll be brief. My son was diagnosed with type 1 at age 13. He is now 18 and is doing well. I would have given anything for him to have participated in a study, like your son was allowed to do. It is indeed wonderful if we can keep any more children from developing this horrid disease. His “Honeymoon Stage” was only a few months long. I have not heard of a prolonged “Honeymoon State”. I know that when he was first diagnosed, his pancreas still worked a little and I truly believe that at that time he could have been cured had they known what to do or had the drugs like the one that your son got to take.

I also believe that they can cure diabetes right now but the drug companies make so much money from treating diabetes that they will fight against any true cure, all the way to the bank.

I know that God is in control of our lives and he watches over my son and one day when he is cured, it will be God’s will. Until then, I know that this too, in it’s own way, is a blessing and must thank God for it.

Posted by Anonymous on 5 August 2008

We discovered that our son was diabetic 2 years ago on Aug 13, 2006, the day before football practice started and 3 days before school started. Talk about a panic attack. I sat in the hospital and cried & cried. He handled it very well. He had lost 19 pounds from July 10 when he had his sports physical. His blood sugar was 962 when we went to the emergency room. He got out of the hospital on a Tues. afternoon, went to 6:30 a.m. football practice on Wed. and started school on Thurs. He had a honeymoon period that started in Nov of 2006 and lasted almost a year. He was very happy. He still took injections but very few. His carb ratio was 1 to 30 and is A1C was 5.2. The growth spurt ended the honeymoon.

Six weeks after my son was diagnoised a classmate of his was diagnoised. His mom was asking me questions at football games but I thought it was because several of her family members also have it. This kid never had a honeymoon and he has fought it terribly and really throwed his parents fits. He got a pump and that was the worst thing that could have happened to that kid. He thinks is fixs everything and it don't. He eats and then doses and that is wrong! My son doesn't want a pump, he doesn't like things attached to him, we have a hard time getting him to carry his cellphone.

I agree that there is a cure out there but the drug companies are making a killing of us. I just hate writing that check to the pharmacy.

I am glad that your son has done so well and hope the honeymoon continues.

Posted by dandbcollier on 10 August 2008

I have had type 1 for about 5 and a half years and was diagnosed at age 24. They thought that I was a type 2 for about the first 3 years. I was on every oral diabetes drug under the sun. I would say that my honeymoon period lasted for at least 2.5 years. I was not in great control, but I did pretty well (A1Cs mostly under 7 or 7.5). But I was able to do this because of eating low carb and going for runs when my BG was high. I don't think the orals did much to keep me under control, and my post-prandials would skyrocket if I ate a "normal" (ADA recommended high carb) meal. I think my honeymoon was pretty significant, and it definitely confused my doctors into thinking I was a type 2 (even though nothing about me pointed to type 2, including my age at diagnosis, which is what they incorrectly clung to).

To the anonymous writer who said: "I also believe that they can cure diabetes right now but the drug companies make so much money from treating diabetes that they will fight against any true cure, all the way to the bank"
You are wrong. They would make much more money with a cure than they would with treatment. Think of the competition within the market right now...a single drug might only have a few million people using it (and that's all they can hope for because of the competition). Contrast that to having a cure and suddenly having 180 million patients using their drug, not to mention all the people who are going to still develop diabetes (the number is estimated to double by 2030). That's a lot of incentive for a company to find a cure!

Posted by Anonymous on 11 August 2008

My 11 year old daugther started the Teplizumab trial in April 2008 after being diagnosed in February 2008. We have another daughter with Type 1 who was diagnosed 5 years ago so we can easily compare the difficulty to control sugar levels between our two daughters. Our 11 year old had a 6.1 Hba1c in July. She was on one lantus shot a day until mid July when she started needing mealtime corrective doses so we went to a pump and she is doing phenomenaly. She hasn't had a number over 200 for over 3 weeks now while we continue to struggle with our other 8 year old daughter who routinely breaks 300 with her sugars and has an Hba1c at 7.2. Teplizumab is deffinately making a difference. We had our 11 year old off insulin altogether for about a 1 week period of time 2 months post intial treatment with Teplizumab.

Drug companies want a cure as much as anybody. Eli Lilly, one of the makers of insulin, Humalog, licensed Teplizumab from MacroGenics. They wouldn't have done this if they didn't think they could make money and they surely must have caluculated the potential for lost insulin sales if the drug works. Drug companies aren't evil, they are trying to improve our lives and find improved therapies. If they find improvements, they can charge more and make more money so it is crazy to think they don't want to find a cure.

Posted by Anonymous on 12 October 2008

I am a type 1 diabetic. I was 26 when first diagnosed. I did experience a "honeymoon" period for 8 months. The initial onset was very short, and at the time I didn't realize what was happening to me. Then, just like that, it disappeared. When it surfaced again, it was full-blown and extreme. I do hope that your son is truly cured forever. I just wanted to share with you, my personal experience.

Posted by Anonymous on 11 November 2008

My 17 year old son began the honeymoon phase two months after diagnosis. He had consulted his endo since his carb to insulin ratio was keeping his bg low. I insisted he take the number of units the doctor told him to and he told me, "Mom, I know my body and if I take any insulin now (bedtime) I may not wake up". I agreed to let him decide. Without any insulin for the carbs he ate, his bg steadily dropped through the night. When he could't eat anymore but was still dropping - now below 60 -we gave him Glucagon. He didn't throw up and went to sleep as soon as his bg reached 70 while I tested him in his sleep.

He was in the honeymoon phase for two years without any clinical trial drug. During those two years, he had to constantly eat to keep his bgs up. We thought that was normal and maybe related to his physical activity until he went to Diabetes Camp and the staff said they had never had anyone in camp react like that in the honeymoon phase.

Just wanted to share this experience in case it helps anyone else.


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