Islets of Hope

BYETTA: First few days

Since my opening (Day 1) post was long I will keep this update shorter.  But it is worth the read if you are considering BYETTA.  First, I must state that I do not own stock in Lily or in Amylin.  But after 3 glorious days on BYETTA I probably will buy stock!

The side effects have been minimal, and compared with what I have gained (and lost -- weight) seem a very reasonable thing. 

Side effects:  first two days burped a lot, as is the case for many.  Mild dyspepsia (heartburn) that is generally made better with antacids.  The metallic taste comes and goes and is not overwhelming, and sometimes I get a mild headache.  The worst part (and if you are reading this you are interested in side effects so I will speak openly) is that the delayed emptying of tummy contents seems to slow the entire GI tract down.  Be prepared from some constipation.

The benefits:  I have had normal blood sugars without exception.  I used to always go high after eating like a "good little diabetic" should.  But I overproduce insulin to the extent that I would go too low hours later, or, if I missed a snack or meal.  Very low.  Sometimes to the point of unconsciousness.  I have not had one reading over 160 mg/dL or under 72 mg/dL since beginning BYETTA.  And, I have lost 7 lbs as I woke to Day 4 (results not typical, I am the queen of bloat and clearly this initial drop is water -- but who cares -- it is still a happy loss).

Now, I do have to say I do not eat a lot and never have. I pay close attention to carbs, fat and protein ratio as well as to the GI index.  I never touched desserts (except in my dreams) and have not had pasta or bread (except low carb bread, if you can even call it bread) in years.  So I have not made major changes in my diet except that I have been able to eat things like fruit and yogurt that I could not eat before without problems.  And, I still eat my usual less than 1,000 calories per day. 

But here is the difference BYETTA has made for me:  I am not hungry and feel content with meager meals ... and I am losing weight for the first time in a year. None of these things were true before.  I felt deprived, hungry, and thought about food all the time, ate very little and was still gaining weight.

I want to thank Rick Mendosa (who I do not personally know but have followed his website for many, many years).  Rick is a free-lance writer who seems very knowledgeable about all things diabetes, and then some.  My own endo refused to offer my BYETTA because I was managing to keep my A1c levels in a decent range (through massive amounts of Glucophage, near starvation, living a life practically void of carbs).  But I can truly say that I felt like I had no quality of life any longer when it came to eating and feeling like a normal person.  I had given up on getting BYETTA until I read that Rick, who also had good control, was also turned down by his own endo.  He did not stop there, he got a second opinion and a prescription and this wonder drug helped him as well.  So, Rick, whether you will ever know this or not, you inspired me to also go to another doctor who, without hesitation immediately agreed that BYETTA was something I should try.

I cannot speak for others and I am sure this drug, like all drugs, is good for some, and not so good for others.  For me, however, it has had a profoundly positive impact immediately.  I will let you know if the weight loss continues ...

BYETTA: Day 1

Yesterday, I was given my prescription for BYETTA.  (Pronounced bye-A-ta).  5 mcg, got my pen, read the instructions.  Twice last night.  Once this morning.  I don't need the information.  I have read everything there is to read about BYETTA for months now until I have memorized the product packet insert, which, I can recite, in english and in tongues.

This morning, I am excited.  What do I do first?  Oh, yes.  Test blood sugars.  Must not be too low for my first dose.  86 mg/dL.  Great, almost like I am not even a diabetic with PCOS and severe insulin resistance.  One would never know what medical dysfunctions lurk within my encodrine depths.

Maybe I should wait until tonight.  What if it makes me sick?  I have to drive children to school.  I have company coming for the weekend.  I am allergic to a lot things.  What if I have an allergic reaction?  What if gas prices soar?  What if Grey's Anatomy did not record on TIVO last night?  What if ...  I put the BYETTA back into the fridge and walk away disappointed in myself.

"Betty" haunts me.  I have hoped and prayed for this drug therapy as a supplement to diet and exercise and Glucophage, none of which are working well for me any longer, for months now.  Why I am hesitant this morning about starting?  Prescribee's remorse?  I realize my fear is very simple:  what if it does not work?  Geeze, I am stronger than this.

I open the box.  Do my "first time pen users" prep and am ready to go.

For my maiden injection I decide upon a large, obscene roll of stomach fat.  Since my hysterectomy last year I have gained almost 30 pounds -- 30 lbs of the 150 lbs I had taken off almost 10 years ago.  I want it gone again.  I diet.  I exercise.  Heck, I even gave up my 2 liters of Diet Coke a day (I drank diet soda instead of eating).  Maybe this drug will help get my overzealous pancreas, Pete, to calm down, stop putting out the insulin like there is an endless supply and letting me have some peace of mind, normal blood sugars, and a svelte body once again.

The needle is shorter than I expected.  Having injected insulin into my tiny daughter who was diagnosed at age 4, this was still my first pen experience.  I am impressed.  Tiny needle, tiny dose.  Big, fat injection site:  I can do this.

I am surprised at the ease in which the needle glides into my fat.  I did not feel anything.  Is it in?  Looks in, just lost under the sea of excess body "tissue."  I inject the dose.  I count.  1...2...3...4...5.   The many months of pleading for, and waiting for, the BYETTA prescription were certainly a lot more painful.

There. I did it. I am no longer a BYETTA virgin and I am proud.  I am a GILLY GIRL!  I want to shout, but there is no one to hear.  The dog seems entirely disinterested in this monumental event in my life.  My new life.  My life on the lizard.

Only minutes after the injection I feel a tingly sort of numbness through my hands and up my arms.  I am dizzy.  Or I am giddy?  Or now, should I say am I "gilly" with excitement?  I decide that this is anticipation, hope surging through my body; excitement and not really a side effect of the great lizard drug.

What time is it?  I am to eat within the hour.  My doctor said waiting 20 minutes is best.  Okay, that would be 6:50 a.m.  Rats.  What am I supposed to eat?  My normal diet of a cup of coffee and 1-carb, no-fat, 80 calorie protein drink probably isn't the right thing.  I hate breakfast.  What do people eat for breakfast that is not sugary-delicious, carb-laden but cleverly packaged to appear as healthy?   

I hate carbs.  Wait.  I don't.  They hate me.  I eat them and they party in my blood stream and then I get tired and moody.  And fatter.  Maybe I do hate them.  Yes, so much that I want to kill them all with my gnashing teeth and digest them, savoring the sweet forbidden thrill of devouring a donut covered in chocolate.  It's been years since I had a donut.  But my quest for BYETTA is not about adding donuts into my lifestyle, it is about being able to eat fruit, whole grains, "maybe" an occassional bite or two of something naughty.  BYETTA is about my health and an improved quality of life.  I want some restored to me.  I deserve it and frankly, as pathetic a die-hard partier Pete the Pancreas is, I prefer his company to multiple daily injections, of insulin, that is, BYETTA is different.

I decide on one half a low-carb bagel with a little whipped, low-fat cream cheese.  This comes to 70 calories total, 1 gram of fat, and only 10 carbs.  Half a protein shake for good luck, too.  Add another 40 calories.

I don't eat on time, according to my doctor anyhow.  I can't.  I have four children busy with their own lives in the morning, which means chaos and shuffle.  But I do manage to eat just under an hour after my injection so I don't worry.

The only proof, so far, that I have taken BYETTA is the metallic taste in my mouth, a dull headache (which is a norm for me anyhow), one lone pen needle in my sharps container, and hope.

Bad Canulas & DKA

Canulas that fail and cause diabetic ketoacidosis

Elizabeth, now age 7, was diagnosed with type 1 diabetes when she was 4 years old.  Like most children newly diagnosed with diabetes, she was heavily into diabetic ketoacidosis (DKA) when we arrived at the hospital the day of her diagnosis.  But only once since that fateful day has she ever tested positive for ketones – even with high sugars – and that was during her first week of living life as a human pincushion.  Until this week.

For more than 2-1/2 years she has been ketone-free.  We have beaten the DKA odds through proper use of an insulin pump and frequent blood sugar checks, and a little bit of luck.

Recently, I switched Elizabeth’s canula setup from the Rapid D to the Inset canula.  The Rapid D works like a thumb tac.  It has a hard, metal needle you shove straight into the insertion site.  No muss, no fuss; easy as pie.  Rapid Ds stay in fairly well and never crimp.  They last for 2-3 days without problems, we have never had an infection, and they are cheap.  I consider them the workhorse of canulas, under appreciated, and sadly, on their way out as more and more companies are pushing fancier and higher priced canula sets on patients.

The downside to using Rapid D is that Elizabeth only has enough body fat to take them in her tiny tushie.  Her bottom was beginning to show the tell-tale signs of overuse and we needed to find a new canula that she could use on her skinny tummy.

We tried several other sets (with disastrous and painful results) before deciding upon the Inset.  Using an Inset requires a lot of finesse and there is lots of opportunity to do something wrong, but they don’t hurt and that is a big plus for any parent who dislikes the idea that they are hurting their child.

But I have found Insets are notorious crimpers and often and deliver insulin unpredictably.  Result:  Three times in the span of 5 days Elizabeth went into DKA overnight when the canula failed her.  Now, I am not a parent who sleeps through the night.  Like many parents, I check my daughter’s sugars religiously throughout the night at least 2-3 times.  On an insulin pump, this is often necessary in children who have dynamic diabetes, as does Elizabeth. 

Last night, I checked her blood sugars at midnight, 2 a.m. and again at 4 a.m.  She seemed fine, but at 4 a.m. had risen to 153 mg/dL so I gave her a small correction bolus.  At 6 a.m. she was over 300 mg/dL.  Elizabeth often suffers from the Dawn Effect so I gave her a generous correction bolus and checked her an hour later:  303 mg/dL; the site had failed once again and so for at least two hours Elizabeth was not getting her basal insulin and in this short time frame she was already into DKA.  “I am peeing dark purple Mommy,” sighed Elizabeth through the bathroom door not pleased with the idea of another “emergency” site change.

This brings me to the point I wish to make.  For those on insulin pumps, especially children, the risk of entering DKA is greater than for those on shot therapy and you need to be vigilant about checking for ketones when sugars are over 240 mg/dL – especially if the site fails, the pump is unhooked, or any time normal basal insulin delivery is compromised.

Why?  Most pump users infuse only one kind of insulin -- rapid acting insulin.  This insulin works quickly but has the shortest life of all insulin available.  For pump users, this means that there is little circulating insulin in the body because the pump gives a constant mini drip drip to cover basal insulin requirements.  When that drip stops, so does basal insulin delivery.

People on shot therapy usually take more than one type of insulin including intermediate or long-acting insulin to cover basal needs.  Shot users have more “on board” basal insulin working in their body at any given time than do those on an insulin pump.

Because pump users do not have long-acting insulin in their body, shutting off the pump for any length of time is dangerous and you should only do so under the strict guidance of your child’s doctor.  Children pumpers can enter into DKA in only 1-2 hours, and at much lower blood sugar levels – even when under the “magic” 240 mg/dL.

If your child does register urine ketones, call your doctor immediately!  DKA often requires hospitalization because simply giving more insulin to bring a child out of DKA faster can actually do more damage than good.  Incorrectly treating DKA can lead to coma, edema of the brain, and death.

This morning we are back using the cheaper, reliable, and yes a little painful at times, Rapid D.  Like everything diabetes, balance is key: Elizabeth hates the Rapid D, but not as much as being in the emergency room. 

Points to remember

• Pump users are at risk for DKA anytime basal rates are interrupted – even for short periods of time.
• Pump users can enter into DKA faster, and at lower blood sugar ranges, than people on shots who take long-acting insulin – even under 240 mg/dL.
• Never attempt to treat DKA by yourself:  DKA is dangerous and you should report urine ketones to your child’s doctor immediately.

Note:  This information also applies to adults on insulin pumps.

Byetta, just for type 2?

Byetta is once again making diabetes headlines (Doctors: Byetta Induces Weight Loss - 05/23/2006).  This time, for its reputation of having the much-appreciated side effect of weight loss in many patients.  Although the clinical trials showed only minimal weight loss in patients, many users are now reporting more significant weight losses.

After reading comments in other blogs and forums for "Lizzie" or "Gilly" users, as Byetta is sometimes referred to, I noticed many reporting the side effects of nausea and gastric reflux.  A fair amount of the posts seemed to indicate that side effects were made worse for many when high-fat or high-caloric meals were eaten and for most, side effects diminished over time.

I also read, with great interest, about women with polycystic ovarian syndrome being put on Byetta as part of their treatment for insulin resistance.  I would love to hear from more women with this disorder (in addition to being type 2 myself, I also have PCOS).  My blood glucose is tightly controlled (in fact, my A1c is a little too low lately) so my own physician was not really interested in letting me try Byetta (despite being severely insulin resistant).  But after sharing with him that I had seen posts by others with non-diabetic insulin resistance (specifically PCOS) having great success on Byetta, he said he'd think about it if I could offer him some evidence that it works.

If you are considering Byetta, or want to learn more about this new class of drugs, you can visit our website using or any of the following links:

About Byetta
Byetta & weight loss
Byetta FAQs

This "friendly" blog is open to persons already using, or considering using Byetta.  Share ideas, experiences and helpful ink information, but please, no solicitations of Spam.

If you need to reach me, please feel free to email me at Lahle@isletsofhope.com.

Lahle
Islets of Hope

I have diabetes

Welcome to Islets of Hope's blog.  First, a disclaimer.  Although I manage a (wonderful and valuable) website, I have never before blogged.  Yes, consider me a newbie.  You are witnessing history in the annals of diabetes -- the first Islets of Hope blog.

My name is Lahle.  I have diabetes.  Please read "About Me" and take a hankie as my daughter Elizabeth's wisdom has been known to move people to tear up.  Elizabeth, too, has diabetes.  She's a "1" gal, while I am number "2."  But we share much in common:  blood sugar checks, concerns for the future, a diet that no one else seems to understand, and many good times and inside jokes.

If you have not visited www.isletsofhope.com you should.  There's not only great information on the site for all types of diabetes and disorders associated with diabetes, there are forums, tips, ideas, even a prayer request corner.  But enough of the shameless plug, let's blog diabetes!

Elizabeth (now 6) made a remarkable statement to me when she was only 4 years old.  She is allergic to long-acting insulin and could only take rapid insulin.  That meant shots round the clock every few hours beginning only a few days after her diagnosis.  She had not even had time to adjust to the idea that she now had diabetes and  was already having to take 7-10 shots a day.

Because of this allergy, Elizabeth was put on an insulin pump almost immediately.  But she had a taste of shot therapy long enough for her to hate it.  Three days on the pump, she rejoiced in the fact that once again she could sleep late (no more waking to shots at 1 a.m., 3 a.m., 6 a.m.), she could NOT eat when she was not hungry (no more feeding the insulin) and best of all, no more Band-Aids (from the shots, of course.)

She proclaimed that she had her life back, that her pump, her new "friend" that she named "Emily," had given her back control.  And it was then that she said something that will stick with me always ...

"Diabetes drools.  But "Emily" rules."

On that thought, I will leave you.  But only for today.