Byetta for Type 1´s

Type 1 and LADA
1

I have been Type 1 since 1977 (the year Elvis died) and been through many types of treatment, Insulins and testing.

Still in good health now at 68 with good blood test results and an hbA1c around 5.5 (not easy to attain and some hypos result)

My Endo says I am becoming Insulin Resistant, plus she would like me to lose some weight (she is stick thin) and I am around 230 pounds and tall. She has put me on Byetta 5microgram dose twice per day & have now been on this for about 3 weeks. No negative reactions; no weight loss yet, appetite still good. I have managed to reduce my Insulins.

I take Novorapid, now, 14 before breakfast, 14 before lunch & 26 before evening meal. Plus 56 of Levermir & 10 of Novorapid before bed.

I used to take Lantus until 6-8 months ago when the Endo changed me to Levimir. Some scare about cancer?? Not sure if Levimir is really working for me

Has any Type 1 out there been using Byetta and how do you find it. Any weight loss or reduction in Insulin?

I suspect that I may need to use the 10 microgram version of Byetta to have better effect. Any views?

I will be happy to share any other experiences I have

Thank you for taking the time to read this.

I am a Brit, married retired and living in the South of Spain and generally enjoying life

Geoff

October 13th:

Just like to say thanks very much for all the many helpful comments that have been posted.

So many with different views but almost none from anyone with Type 1 being on Byetta. I am due a visit soon to my Endo so I will review this.

Since Byetta at 5mgm dose x 2 is not doing much I have decided to up the dose to 10mgm x 2 (using the 5mgm pen twice at each injection time - much more expensive than using a 10mgm pen. I will check BS more frequently for a while.

Do you guys have to pay for your medications in the USA?

Here in Spain (and same in England) the Insulins are free as are 100 blood test strips per month but I have to pay if I use more - about 50 dollars equivalent per 100 and the 5mcg Byetta is not free and I pay about 100 dollars for each pen per month.

I take the point about weight loss being a good thing to aim for to improve IR. I do eat a sensible diet (believe me if I had a "free decision" on this I would eat twice as much - could just devour a Steak & Ale large cut of prime rib with baked pots and all the trimmings - but no folks tonight I will have a modest chicken casserole, no starter, no dessert with coffee to follow.

During the day I am a "saint" regarding eating. Porridge for breakfast, two slices of bread with boiled ham for lunch plus fresh fruit and usually little in between. Maybe a cookie (we call them biscuits)about 5.0pm with a cup of tea as the BS drops and we eat a bit later here - 7.30pm ish

OK, not too much exercise but we have two dogs and take them for a walk. Not a "couch potato" always up and about doing something

Will again apprecaite any comments from anyone

Many thanks

Geoff

2

Sorry I don’t have any experience with Byetta.

If you don’t have the book Pumping Insulin by Walsh then I recommend that you get it. You have a total daily dose (TDD) of 120 units a day. Your expected TDD (per Walsh) is 57.5 units a day. So you do seem to be pretty insulin resistant.

On the other hand your control is so good (5.5 HbA1c is amazing) that I would hesitate to recommend changes. Unless you see some problems with your control - e.g. is your BG bouncing from very high to very low a lot, but somehow averaging out to 5.5? Do you always see a HbA1c in that range? How tall are you? What’s your BMI? Are YOU concerned about your weight?

3

Nver even heard of Byetta for a Type 1. I’d look into Symlin rather than Byetta.

4

Wow, 5.5 & retired to the South of Spain. Congrats on both!

Dosing of Symlin can be a bit tricky, but it has helped many cut insulin doses & lose weight.

Byetta delays stomach emptying & helps people feel full longer.

5

Thanks for your reply - found yours in my “junk” mail box!
I will ask my Endo about Symlin when I next meet her.

Been on Byetta now for just one month with little change - except I seem to have a lot of acid indigestion

6

Thanks for the reply - just found yours in my Junk mail!

My height is 1.88m and BMI about 33. I am not actually concerned about my weight but it would be nice to drop a few pounds. It seems as though my TDI is high.

I will look out for the Walsh book
My HbA1c has been around 5.5 for many years and BG does bounce around a little with first test of the day always a little high around 160 - 210 (8.8 to 11.5) - not sure what units you use in the States.
Interesting that all my replies (thank you all) have come from the USA.
I do work quite hard to achieve the good hbA1c.
Regards
Geoff

7

My understanding is that Byetta doesn’t work with T1’s… Byetta is supposed to trigger the production of Amalyn, which we as T1’s can’t make. Symlin is the synthetic Amalyn.

8

Byetta for T1 is an off-label use. Dr. B has been using it for T1s, and is now using Victoza. The major actions of Byetta (and Victoza) are improved insulin secretion in response to eating and decreased hunger/delayed stomach emptying. Obviously, as T1 you don’t care about the first, but the second can help you lose weight. Losing weight is the primary benefit for a T1 with these drugs.

If you continue to eat the same amount and observe a reduction in TDD, I would caution you to see if you are having delayed stomach emptying and you may be going high a couple hours after meals. Many people do find that there is a marked reduction in appetite and weight loss does happen with a comensurate improvement in IR. If you just want to address IR, you might discuss with your endo the use of metformin.

9

Im thinking the weight loss is also about IR. The less you weight the less resistant you are from what I understand. Hope your having a great time there in Spain. Its sounds wonderful!

10

Have you considered whether your hunger may be triggered by too much insulin? Are you eating after meals and still having good blood sugars? If your insulin response is variable, you may find that you bolus for a meal and then have a normal insulin response only to end up low with insulin driven hunger. Have you noticed this?

There is no reason you can’t ask about Byetta or Victoza. There is a Victoza group (http://www.tudiabetes.org/group/victoza).

11

Hello there!

I am type 2 and I take 10 mcg (2x a day) byetta and levemir. I would have to express concern with you being a Type 1 and using byetta. It is considered a drug for Type 2 diabetics and is considered a weight loss drug. Mainly it slows down the digestion, with helps your BS and can curb your hunger. It also works on you liver from not producing glycogen into glucose. It is some times prescribed with a metformin type drug. Metformin in conjunction with the byetta works well for me. But metformin is not given to type 1’s to my knowledge. The weight loss will come in time you have only been on it for 3 weeks

I would question how you are taking it because there is a certain way users are instructed to administer it. I was told to inject it at least one hour before eating which is crucial. This drug will drop you BS like a hot potato and put you in hypoglycemia super quick if you do not eat. So you have to plan your meals. Are you exercising ? This could aid the byetta in helping you loose weight.

Please look up byetta and read about the mechanisms and the side effects of the drug. It causes nausea. For myself, I have experienced the nausea at the weirdest times. It can give you the over feeling that all foods is nasty.

Good luck!

12

Actually, the way that Byetta works, amplifies the signals that tell the pancreas to release insulin in response to eating. Since a T1 has a poor pooped out pancreas, amplification won’t squeeze much more insulin out, so it is unlike to cause a hypo that way. It will cause a delayed stomach emptying and that needs to be accounted for, and can cause a hypo if not properly managed.

ps. And yes, both Byetta and Victoza can cause nausea and GERD.

13

Technical information to follow:



Byettta and the newer Vicotoza are incretin memetics. They are man made incretin hormones injected to increase the availibilty of naturally produced insulin. How do they work you ask? Incretins are produced in the intestine shortly after a meal is started. Their purpose in life is to race off to the pancrease to stimulate it into releasing a wave of insulin to deal with the upcoming rise in BG. Now, in a fully functional pancrease or non-diabetic, this release while capable of keeping BG levels consistent will eventually drive BG levels down if not turned off. That’s where DPP-4 comes in. After the release of the incretins and they’re racing off to the pancrease, the body releases DPP-4 which is the kill switch so to speak. DPP-4 chases after the incretins deactivating them as a sort of feed back loop to control just how much insulin is released.



Now, what does all this have to do with us, the diabetics of the world. For those that have impaired pancrease function where the pancrease can still produce “some” insulin injecting an incretin memetic such as Byetta and Victoza works because the pancrease will respond to these two drugs in the same way and release insulin. But you ask, doesn’t DPP-4 come along and just destroy these incretin memetics as well . … NO. These injected incretin hormones, unlike the ones naturally occuring in the body are “ignored” by DPP-4. DPP-4 doesn’t see these incretins allowing them free access to stimulate the pancrease to release insulin for a longer period of time than normally possible. Therefore allowing more of the good stuff to flow from the pancrease. In addition incretin hormones also help with the feeling of fullness by delaying gastric emptying.



This was developed initially with T2’s in mind as they traditionally have can have quite a bit of function left as this will boost the quantity of insulin produced over a longer period of time after eating. T1 use is an off label application, however for those T1’s who’s pancrease is still capable of making SOME SMALL amount of insulin on its own then Byetta and Victoza would also increase the available amount of insulin naturally produced. Not enough to replace the need for daily insulin use, but could depending on the individual increase control, reduce swings and reduce the amont of injected insulin. In addition to this action there is also the action of delaying gastric emptying and associated weight loss experienced with their use. Generally also a benefit to glucose control



There are also two pills also available, Januvia and Onglyza. The work by inhibiting the release of DPP-4, thereby allowing naturally produced incretin hormones to run amok (so to speak) stimulating the pancrease to produce insulin for a longer period of time as well as delaying gastric emptying. They’re a different approach to the same problem, getting the incretin system to stimulate the pancrease for as long as possible thereby increasing the amount of available endogenous insulin.