BYETTA

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Don't know how much this will help anyone but here's my Byetta story. (WARNING: Long post)

I'm type 2, with PCOS and have been on Byetta since November 2008. My own level of insulin resistance means that I also have Acanthosis Nigricans (dark patches of skin on neck, in armpits, on elbows, in skin folds, etc.)

When I started Byetta my weight was 130kg (20st 6lb) and my HbA1C was 12.2%. I was on 2500mg Metformin, 160mg Gliclazide and other meds for blood pressure and cholesterol.

I found that although Byetta helped with reducing hunger/ appetite (before I had no "off switch" when it came to food). It was also necessary for me to make other changes to my lifestyle to maximize the impact Byetta could have.

When I started on Byetta I did suffer from nausea and I found the longer it was between injecting and eating, the worse it was. (Still happens two years on.)

Portion control (from Jan 2009) was the first major thing I had to tackle due to reflux - believe me, it's no fun waking up choking on your own vomit! (Though, I have to admit... it's a darn good incentive to eat less!)

I then started walking on a regular basis and, to begin with (July 2009), I found even a short walk knackered me for at least 24 hours afterwards but I persevered and, in time, it's become easier. (I can now walk 5 miles.)

The last change I made was reducing the amount of carbs I ate (Jan 2010). I don't "low carb" but I do limit the amount I have to between 90g and 150g per day.

At my most recent review (10th March 2011) my weight was down to 103.6kg (16st 4lb) and my HbA1c was 6.5%. I no longer need to take any Gliclazide and am about to see if I can reduce my Metformin by 500mg per day. Acanthosis Nigricans is reduced but still have some patches.

Downsides of Byetta:

There are times when my appetite is SO suppressed that the mere thought of eating is enough to make me feel really ill. And even if I do try to eat, there's nothing I "fancy".

A lot of the food that I used to really enjoy now taste completely bland and I've had to up the spiciness quotient by quite a lot to get the same pleasure.

My eyes can still be "bigger than my belly".

Constipation is now a constant friend...


Klair
 

cugila

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purplecrystal said:
does anyone know if the medroxyprogesterone pill does infact effect bms?because i was told it would effect the blood sugars and i should have a coil iud fitted.to give the hormone direct.but i dont like the thought of it.

The answer is yes it can.......information from the BNF61 (March 2011).

Progestogens can decrease glucose tolerance and patients with Diabetes should be monitored closely.

How much it does would be an individual thing.
 

stuartclose

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Messages
101
I have stored by Byetta in a cupboard under the stairs, temp. about 20c, this morning I noticed that the temperature has risen to 30c obviously as the weather has got milder. I have put the pen back in the fridge as I have no other means of keeping it at under 25c, any tips!!

Eli Lilly say its because of any discomfort using a pen stored in a fridge - is that the only reason?

Help please.
 

cugila

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stuartclose said:
I have stored by Byetta in a cupboard under the stairs, temp. about 20c, this morning I noticed that the temperature has risen to 30c obviously as the weather has got milder. I have put the pen back in the fridge as I have no other means of keeping it at under 25c, any tips!!

Eli Lilly say its because of any discomfort using a pen stored in a fridge - is that the only reason?

Help please.

Here's one I did earlier in this thread (July 2010) ...most of the answers are in here if you use the search facility.

I 'store' unused pens in the fridge, once they are in use then it is always at room temperature. Away from sunlight and direct heat. If the room temp get's too hot then I sometimes pop it in a store cupboard to keep it cool, below 26 deg C. If very hot then in the fridge for a short time but always take it out about an hour before using. That way it doesn't sting when injecting.

Some Member's also use a vacuum flask which keeps things cool to pop it in.
 

jane22

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Messages
164
If I think it's going to be warm I keep my pen in a Frio pouch and find it very good. I spend quite a lot of time in hot countries and either use the frio or pop it in the fridge. I don't have any problem with injecting it cold.
 

weegee

Member
Messages
6
Hi this is my first visit to the forum, i have 1 question at this time.I use byetta and normally i request 2 pens each time from my G.P. 1 i use in work 1 i use at home, but i noticed that in the paperwork that comes with the pen it tells you to dicard a pen after 30 days. I would still be using my pens after 45+ days. Is this still o.k.? Gerry
 

daisy1

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Hi Gerry and welcome to the forum :) There are many users of Byetta here on the forum and someone will be along soon to answer your specific question re pens. I think you are not newly diagnosed but the Forum Monitors have written some basic information which they give to new members. I think some of this may be useful to you anyway to help you to manage your diabetes as well as possible.

viewtopic.php?f=20&t=17088#p155405
 

weegee

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Hi Daisy thank you for your reply i am already wiser with your information on the carbs, i will take this on board . Much Appreciated. Gerry
 

cugila

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weegee said:
Hi this is my first visit to the forum, i have 1 question at this time.I use byetta and normally i request 2 pens each time from my G.P. 1 i use in work 1 i use at home, but i noticed that in the paperwork that comes with the pen it tells you to dicard a pen after 30 days. I would still be using my pens after 45+ days. Is this still o.k.? Gerry

Simple answer is no, it isn't OK. The pens are only to be used for 30 days max. Only one pen at a time should be in use. After 30 days at room temperature the drug is no longer supposed to be effective. Your GP should know this is the case ? My Endo checked with the manufacturers and was told in no uncertain terms that 30 days is the rule.....no more.
 

weegee

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Hi, I wondered, but i assumed since my GP was giving me 2 pens each time that it was ok. Thank You for taking the time to reply. Gerry
 

jane22

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164
My GP prescribes 2 pens at a time to last me 60 days. They are expensive and so to have 2 going at once is wasteful and abusing the NHS. Obviously you haven't done that on purpose. Each time when I take in the script to the chemist I take 1 and then he orders the other a month later when I need it.
 

topcatt53

Member
Messages
12
Just thought I would pop back in and say how I was doing on Byetta having just about completed my third month with the last 2 on the 10mg pen. Saw my consultant on the 17th and he is highly delighted with my weight loss (5 kilos) and the fact that it has brought my sugar levels down to mainly under 7 at least. So pleased he doesn't want to see me for another 4 months. So all my other meds stay the same and just wanted to say thanks for all the guidance I have received from this forum - it has been a great help and to any others with queries I always use my byetta straight from the fridge and have had no problems with it, and since being on byetta have found that low carbing comes naturally as I have lost my taste for bread and potatoes(which I used to LOVE!!) so seem to naturally have a much smaller appetite now - just hope it all continues going so well as I am very impressed with byetta and just hope the medics keep me going on it as it is the best I have felt since I was first diagnosed over 5 years ago.
 

amateur endo

Newbie
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2
Hi Folks,

First post here - just finished reading all 131 pages of this discussion.... yep ... 6 days.

A bit of intro: male, 55 yrs diagnosed T2 in 2003, last HbA1c was 9.1 down from 9.5 last November. Medication has been 4x500mg metformin slow release; omacor and rosuvastatin. Started Byetta last Wednesday evening on the 5µg dose. Max weight was about 255 lbs in 1995 (comfort eating when my first wife was terminally ill). Slowly struggled to get my weight down and been around 205 lbs for the last year. I became a Dad for the first time aged 44, two boys 5 and 10, got to crack the big D to stay around and help 'em grow up. My Dad and his Dad both had heart attacks at age 61. Took my (tiny) pension early so I can work part time and get plenty of exercise - walking, running but mainly recumbent triking.

For the first few years I could get my bg's down with a combination of restricted carbs and exercise and if I went really strict I could get close to normal numbers after 48 hours of working out the bodies carb stores. Recently this hasn't been working so well. I went on a really strict regime in mid January and found that bg's only came down very slowly during the first two weeks. Hence the acceptance that I need some extra medical help - I've been very resistant to taking extra drugs.

So far I've experienced the usual symptom of feeling immensly full after much smaller portions. I've always had a strong "dawn phenomenon" - liver inactivaton of insulin and dump of glucose to rev the body up - fasting numbers have historically been in 11 to 14 range wit daytime numbers in the 7 to 12 region depending upon carbs and exercise levels. Last couple of days I've had fasting results 10.2, 10.3 and I've had daytime numbers in the 6 to 8 range so even after 5 days I'm seeing an effect.

I've read very widely about diabetes and the various drugs used in its' treatment - hence "amateur endo". A long time ago I had a career in chemistry ....

A couple of things to share.

1. For a very good explanation of how Byetta and other incretin mimetics work please have a look at the following medical paper by Frank Svec. I can't see the insert link button so you'll have to paste the address into your browsers address field.

http://www.jaoa.org/cgi/content/full/110/7_suppl_7/eS20

2. Regarding migrating to the 10µg dose - further side effects etc. With the 5µg pen the total daily dose is 10µg, and with the 10µg pen it will be 20µg. I'm planning to ask for a second 5µg pen and start 3 shots per day for a week before I start the 10µg dose. Hence I'll step up my daily dose from 10 to 15µg before making the transition to 20µg. That's why I read through all 131 pages to see if this had been discussed already.

The pharmokinetics of Byetta are that it reaches median peak concentration in the body after 2.1 hours and the effect on serum insulin levels is finished by 6 hours, (see page 15 of http://pi.lilly.com/us/byetta-pi.pdf). Hence the requirement to inject less than one hour prior to eating and space doses by at least six hours. With a 5µg pen I could simply take two shots with the evening meal for a few days. Based on the above pharmokinetics I could take the three shots with the three daily meals provided the first and last shots are separated by at least 6 hours and still never exceed the dose from a 10µg pen.

So I do 30 days with 5µ pen - regular. The second 5µg pen will last maybe 20 or 25 days with 3 shots per day towards the end, and then I move onto the 10µg pen.

I can see this approach would not be favoured by the PCT/NHS as the 5 and 10µg pens are the same price and running 3 shots per day from a 5µg pen effectively increases the daily cost of treatment 50%. However, I'm only talking of a few days to bridge the dose doubling to alleviate side effects.

I've got some thoughts on long term effects of Byetta, phase 1 insulin response, beta cell recovery (observed in Byetta treated rodents) etc. but don't want this first post to be too long.
Best Wishes to you all,
John.
 

cugila

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Welcome to the Forum. Well done for taking the time to read through the thread......... :)

I really don't see the point of having an extra pen and taking an extra shot of the 5ug dose.....you seem to be expecting side effects ? They are not compulsory. It also seems wasteful and will certainly be an extra cost on the NHS budget. Why do something that you might not need to ?
I can see your logic but really think it is uneccessary.

I started /Byetta over 2 yrs ago, hardly had any side effects at all apart from slight nausea in the first week. After that all was plain sailing and the transmission to the 10ug dose was unremarkable. Since then I have now reduced back down to the 5ug dose again as I was continually hypo'ing in the early evening. All seems to be well.
 

amateur endo

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I'm not really expecting to get side effects - in my case they have been sort of self inflicted! After my second evening injection I (deliberately?) ate a bit too much and had to stay up three hours extra until the discomfort passed. I think I was curious to know what the symptoms would feel like and now I've experienced it I'm not intentionally going there again. Curiosity killed the cat and cost me nearly half a night's sleep.

I understand each pen is spec'd to deliver 60 doses but contains a reasonable surplus. I may just double up the evening doses from this first pen for the last 3 or 4 days. This would still step the daily dose to an intermediate 15µg without increasing costs - just using the surplus material which would otherwise be discarded along with the pen when it reaches the 30 day limit.
 

cugila

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topcatt53 said:
Just thought I would pop back in and say how I was doing on Byetta having just about completed my third month with the last 2 on the 10mg pen. Saw my consultant on the 17th and he is highly delighted with my weight loss (5 kilos) and the fact that it has brought my sugar levels down to mainly under 7 at least. So pleased he doesn't want to see me for another 4 months. So all my other meds stay the same and just wanted to say thanks for all the guidance I have received from this forum - it has been a great help and to any others with queries I always use my byetta straight from the fridge and have had no problems with it, and since being on byetta have found that low carbing comes naturally as I have lost my taste for bread and potatoes(which I used to LOVE!!) so seem to naturally have a much smaller appetite now - just hope it all continues going so well as I am very impressed with byetta and just hope the medics keep me going on it as it is the best I have felt since I was first diagnosed over 5 years ago.


Well done TC........ :D
Great to see another satisfied Byetta user again.........
 

jane22

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Messages
164
I can't see the point in using 2 pens either. Just go for it. I had a couple of weeks of nausea but you already know you have to reduce portions and that helps along with things like ginger tea. Also your pen is set to deliver 60 doses over a 30 day period, yes there is a little left at the end but not much and they do tell you to start a new one after 30 days. You shouldn't go on using it after that time.
 

KurvZ

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Messages
58
Byetta dose from 5-10mg

Hi ,
Im coming near the end of my initial Byetta Pen 5mg , the Nurse has told me and given me a prescription for 10mg , when I asked her why is my dose being doubled as I was maintaining good BG levels , she said that is how it works you start off on 5mg and when your body gets used to it you go to 10mg..

My question then is your experience the same started off on 5mg and then onto 10mg . Im only on my third week of all my medications , and I'm averaging 5.5 on my Meter 6.8 is my highest reading for a week after eating (2hrs)

I'm lost but as I say I'm all new to this and Haven't got a clue so just going with the flow ..

I'm losing weight at a good fast rate , I've reversed my dodgy eating habits now I'm wondering if I'm worse off than I 1st thought ?

But on the plus side I haven't felt better for years so im not complaining just curious

Thanks Dave
 

cugila

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It is normal that you move on to the 10ug pen after about 4 weeks, however not everybody needs to. It is an individual thing. You may find that your Bg levels can drop too low so you need to be careful on the higher dose that you do not hypo.......

If you do start to do this (hypo) you need to go back and discuss it with your GP/Nurse. I was on the 10ug dose for 2 years but have had to go back onto the 5ug pen because of too many hypo's.