BYETTA

[Dennis]

Re: Anyone use Byetta?

yes you are correct i was told to have carbs with every meal and have never been told to restrict them nor count them. i took 2 injections yesterday but had to make myself sick 1 hour after 2nd injection. had to do same this morning. usual day would be 1 slice toast 2 biscuits for breakfast 2 slice bread with cold meat for lunch and pastsa bolognese and crusty bread for dinner also couple of packets of crisps as snacks. again i would be grateful for any help thanks

Hi Shazscot,

In the British National Formulary (or BNF - the doctor's bible for prescription drugs) it says about diabetes that before any medication is started, the doctor should recommend a reduction in carbohydrate. The reason for this is very simple. Diabetes is an inability to deal correctly with glucose, and glucose comes exclusively from the carbohydrates we eat. So it makes sense to eat less of the things that our bodies are not able to process. That doesn't mean eat none, just less.

In your own case the typical daily food intake has a very high proportion of carbohydrate, and all of them are the "empty" carbs (those that contain just starch and nothing else) as opposed to healthy foods that contain vitamins and minerals as well as carbs. Your breakfast for example is exclusively starch - no fat or protein, no essential vitamins or minerals. Bread (starch) again with lunch, pasta (starch) and crusty bread (starch) for tea. Crisps are again pure starch with a little fat.

I appreciate that if you are used to a very high intake of bread then it is difficult to change, but there are lower carb breads that you could eat, like Nimble or Weightwatchers bread, both of which are around half the carbs per slice than normal bread. Biscuits are not only high in starch but high in sugar. For lunch why not drop the bread an have the meat portion with a salad instead. That way you will still have some carbs, but healthy ones. For tea try reducing the amount of pasta by a quarter, and having more of the bogognese sauce instead. And a slice of low carb bread.

Try this for a week and you should see a big difference in your BS levels.

 

[Caroline P]

Re: Anyone use Byetta?

Hi everyone

Thought I'd pop in tonight and catch up with how everyone is doing.

Just about to complete my second week on the 10 pen now, tiny tiny bit of feeling sick but nothing that bothered me

Have been able to halve my glic now to just one in the morning and one in the evening. BS levels went up a tiny bit (not hitting the 4's anymore, but usually stable around 5 to 7) go up a bit at breakfast to around late 8's early 9's but DS told me this was fine for me and she said she didn't want to see any 4's anymore.

Was hoping to drop another glic or two but hey-ho half reduction is better than nothing

Lost about 13lbs now since starting the "spit" on 17th July and cannot praise it enough. I feel a totally different person, more energy, less lathargic, just generally feel well most days (still get the IBS badly but I'm used to that).

DS measured my waist (and i was wearing very similar clothes to my first appointment) and I'd shifted 3 inches off my waist, in fact I now actually have the beginnings of a waist hehe

I hope you are all doing well

Best Wishes

Carrie

 

[SkimblesQueen]

Re: Anyone use Byetta?

Hello,

I've just been told I'm getting Byetta by the consultant at my local hospital (friday)...Apparently he's got to write to my GP & get him to prescribe it though. He expects the process to take 10-14 days is this normal? My BM's are between 18-20 most days, so I don't feel terribly well most of the time, I've already had to wait 3 weeks.

It's funny, they've said I'm a type 1 diabetic, as I've had diabetes since birth, but I rather than a total lack of insulin all the time, I have an erratic Pancreas, so some days it produces & some days it doesn't! Until recently (When I got glandular fever actually), mostly the days it produced & the days it didn't averaged out to give me just a slightly elevated HbA1C but since having glandular fever this has been getting worse & then having caught Swine flu 2 months ago, it's all gone completely out the window. They're giving me Byetta to aid weightloss as well as stabilise my BM's.

I'm a bit worried about the needles, & the nausea I've heard about. The diabetic nurse on friday stabbed me with a needle to show me what to expect & it really hurt.

Also, I've found information that says Byetta after opening doesn't have to be stored in the fridge, but the diabetic nurse says it does...anyone got any experience with that?

I want to go on a day trip to Alton Towers in the week after I start Byetta, but I'm concerned if that's a wise idea, anyone else been on long trips with it & had any problems?

I forgot to mention I'm currently on 160mg of Gliclazide twice a day.

Hannah

 

[Dennis]

Re: Anyone use Byetta?

I've just been told I'm getting Byetta by the consultant at my local hospital (friday)...Apparently he's got to write to my GP & get him to prescribe it though. He expects the process to take 10-14 days is this normal? My BM's are between 18-20 most days, so I don't feel terribly well most of the time, I've already had to wait 3 weeks.

Hi Hannah and welcome to the forum, and to the world of Byetta! A week to 2 weeks is quite normal. Most GPs are not specialists in diabetes and know little or nothing about Byetta. So they rely on consultants, who really are the experts, to tell them what to prescribe. Your blood sugar level is very high, more than 3 times what it should be, so it's not surprising that you will feel pretty rotten.

It's funny, they've said I'm a type 1 diabetic, as I've had diabetes since birth, but I rather than a total lack of insulin all the time, I have an erratic Pancreas, so some days it produces & some days it doesn't! Until recently (When I got glandular fever actually), mostly the days it produced & the days it didn't averaged out to give me just a slightly elevated HbA1C but since having glandular fever this has been getting worse & then having caught Swine flu 2 months ago, it's all gone completely out the window. They're giving me Byetta to aid weightloss as well as stabilise my BM's.

The definition of a type 1 is someone whose pancreas is unable to produce insulin. If your pancreas produces insulin erratically then you are not a type 1. If your pancreas is struggling then taking a sulphonylurea treatment, like gliclazide, is certainly not going to help it. Gliclazide simply forces the pancreas to produce insulin and is believed by many experts to be a major cause of pancreas burn-out. Many GPs in the States now refuse to prescribe it. The Byetta should certainly help with the weight loss, but it can only stabilise your BS if your pancreas is capable of producing insulin when needed. If it can't do that then neither Byetta nor gliclazide will make any difference.

I'm a bit worried about the needles, & the nausea I've heard about. The diabetic nurse on friday stabbed me with a needle to show me what to expect & it really hurt.

If it was done correctly then you shouldn't have felt a thing! Needles have different thicknesses (guages) and the recommended guage for the needles that fit on Byetta pens is 31g. When you get your prescription, make sure that you also have prescribed 8mm 31g pen needles. The most commonly used ones are BD Microfine needles - the Byetta pens don't have needles attached so you will need a separate prescription for these.

Also, I've found information that says Byetta after opening doesn't have to be stored in the fridge, but the diabetic nurse says it does...anyone got any experience with that?

Your nurse is wrong and obviously hasn't read the Byetta instruction leaflet! This clearly states that Byetta must be refrigerated until first use. After that it can be kept unchilled provided the temperature doesn't exceed 25°C (77°F). Most diabetic nurses, like their GPs, know very little about Byetta as it is still relatively new.

I want to go on a day trip to Alton Towers in the week after I start Byetta, but I'm concerned if that's a wise idea, anyone else been on long trips with it & had any problems?

Shouldn't be a problem at all - but will you need to have it with you? You should inject with your breakfast (so probably before you set off for Alton Towers) and again with your evening meal. If you will be eating out in the evening then you will need to take it with you, so keep it in the box it comes in as that will give it some protection and also has handy slots for carrying needles. If you are going on any of the rides where you are caged into your seat, just make sure the safety harness can't crush the box.

I forgot to mention I'm currently on 160mg of Gliclazide twice a day.

If you take both gliclazide and Byetta you will most likely have a serious hypo as you will be producing double the amount of insulin that your body needs. Most patients have their gliclazide cut initially by half, then gradually reduced over a period of a few months down to either a minimal amount, or cut out completely.

Good luck with the Byetta and let us know how you get on.

 

[SkimblesQueen]

Re: Anyone use Byetta?

Hey thanks for the reply.

I have a funny feeling the gliclizide may be what's "helped" make my pancreas "tired". As I have gone from 40mg per day to 160mg twice a day in a year.

If I'm not type 1, then what am I? Because I was told that it USED to be thought that type 1's produce no insulin, & now it is thought that some type 1's can produce some insulin some of the time.

I have a few needles the diabetic nurse (at the hospital) gave me, but just about a dozen.

If I go to Alton Towers I will need to be taking it with me, loooooooooooong day from here & by coach, I shall be breakfasting on the coach as will be too early to do so before. I understand Alton Towers will keep hold of medicines for you anyway, so as long as I remember to collect it at the end of the day this should be fine. I was more concerned about the sickness etc, & going so far, in case there's an emergency...even more worried since you mentioned hypo's, as they will not review my gliclazide for 4 months (so the consultant says).

I also went to my local Boots to see if they could get it in, considering it's still so new...they've said they've had production problems with it, but have been able to order it in ready for when I get my prescription...only apparently the units are in 2's. which could be an issue, as I'm only meant to be on the 5mcg pen for 1 month.

Anyway, I shall let you know how I get on.

Thanks again

 

[Dennis]

Re: Anyone use Byetta?

If I'm not type 1, then what am I? Because I was told that it USED to be thought that type 1's produce no insulin, & now it is thought that some type 1's can produce some insulin some of the time.

Hi Hannah,

In some people the pancreas deteriorates over a period of time until it stops producing insulin completely. This period when it is still working, but at less than full capacity, is known as the honeymoon period and it can last anything from a few months to several years. I am not aware of any medical definition where a type 1 is able to produce insulin except during a fairly short-lived honeymoon period. People like you in the "sometimes I produce insulin & sometimes I don't" situation are often referred to as type 1.5 - somewhere between type 1 and type 2!

I have a few needles the diabetic nurse (at the hospital) gave me, but just about a dozen.

As I said you will need a prescription - a dozen will last you less than a week. They come in boxes of 100 needles, so a box will last you 7 weeks.

If I go to Alton Towers I will need to be taking it with me, loooooooooooong day from here & by coach, I shall be breakfasting on the coach as will be too early to do so before. I understand Alton Towers will keep hold of medicines for you anyway, so as long as I remember to collect it at the end of the day this should be fine. I was more concerned about the sickness etc, & going so far, in case there's an emergency...

Unfortunately you do have to consider that you may suffer the nausea that some, but not all, patients experience. I was one of the lucky ones as it didn't affect me, but if you read back through the posts on this topic you will see that it does seem to affect many - and a higher proportion of women than men for some reason. The stats say around 40% will experience nausea - although in many cases this will just be feeling queasy rather than actually being sick.

. . . even more worried since you mentioned hypo's, as they will not review my gliclazide for 4 months (so the consultant says).

That's very worrying. The manufacturers (Eli Lilly) issue a warning that "When BYETTA is used with a medicine that contains a sulfonylurea, hypoglycemia (low blood sugar) is a possible side effect. The dose of your sulfonylurea medicine may need to be reduced while you use BYETTA." Here's a link to the Byetta website.
http://www.byetta.com/index.jsp
I suggest you print the section and take it to show your doctor. I am not trying to be alarmist, but with such a high dose of gliclazide as well as the Byetta, hypos are not just a possibility but a certainty!! You need to take this up with your doctor as soon as you start on the Byetta.

I also went to my local Boots to see if they could get it in, considering it's still so new...they've said they've had production problems with it, but have been able to order it in ready for when I get my prescription...only apparently the units are in 2's. which could be an issue, as I'm only meant to be on the 5mcg pen for 1 month.

Byetta has been available in the UK for more than 2 years now, so it's not that new! Any chemist (Boots included) should be able to get it from their suppliers within 24 hours. Not quite sure what the 2 units is about? If that means their minimum order is 2 pens then that's their problem not yours, and not one that I have ever come across with Boots or any other chemist. Their responsibility is to provide you with what it says on the prescription. If that says one pen then that's all you should get.

As regards the 5mcg pen - that is the dose that everyone has to start with. For some people that is as strong a dose as they will need. Unfortunately our UK medics don't have the experience with Byetta that they do in the US where it has been available for nearly 5 years now. In the States they regard 5mcg as the "normal" dose and 10mcg as a stronger dose that is available, but only if needed. In the UK the medics seem to regard as 10mcg as the "normal" dose, with 5mcg as simply a starting point to get you there as fast as possible.

I hope you find it as successful as most of us on here have.

 

[JOJOUMGOBO]

Re: Anyone use Byetta?

hi every1
i am new to this site and just reading through your letters , i have been on byetta for about 4/5 weeks now at first i thought it was the worst thing going , i was trying to eat /drink and i was vomiting all the time ( not very good ) now that my body as got used to having byetta 10ml it is starting to change my life completely , before i started i was topping the scales at 19st.12. my b/s where allways erratic . now i am onto my 5th week i am down to 16st 5. ( yes ) amazing really i just cannot believe it myself ,the only side effects i get now is the odd acid reflux , the only time i feel sick is when i try and cheat and eat bread , so i avoid bread ,
ive started going back to a gym for a steady workout , as wat i have noticed lately is tired arms and legs , i walk approx 2/3 miles a day around the bay,
as for the chap who says he cannot get byetta on nhs . i thought all medications are free for diabetics ,it would be wise to check up on this as i have been diabetic for 20yrs and all my medications are free .

 

[shazscot]

Re: Anyone use Byetta?

hi all, following recent advice from dennis i started my 1 week trial cutting down carbs today. have swapped to nimble bread and had 2 slices with tea 40 min after injection. not long after this felt sick had stomach pains and headache . i would like to know if symtoms are made worse by taking drinks with food? after reading post from jojoumgobo re avoiding bread would like to know if that would help me? also i'd like to know if its taking me longer to get used to byetta because i dont take injections every day? only work 8hrs a week and felt awful at work last wednesday and do not want to be off work. all advice welcome thanks

 

[SkimblesQueen]

Re: Anyone use Byetta?

I think in view of the odds I'll put off my trip until I know what Byetta's going to do, As the last thing I want is to be going round on rides already feeling sick.

I just saw someone say something about not being able to eat bread, are there certain foods that you cannot eat with Byetta? (Apart from things high in sugar obv)

JOJOUMGOBO 3st 7 in 5 weeks! WOW - I hope I'm as lucky as you! Congratulations!

shazscot Although I've not started taking my Byetta yet, I assume it probably has a cumulative effect, so not taking it everyday is probably not helpful with regards to getting your body used to it. (I have other medicines which work the same way)

With regards to avoiding bread, if it's something you think you can stick to if necessary, give it a go & see what happens, because I don't think anyone's going to know until you try it out, & missing out the bread for a week to try probably won't hurt you, BUT try not to make too many changes at once or you'll find it really hard to stick to.

As for work, I think your health is more important & they should just be patient for a while, maybe consider getting a doctors note, that way they can't argue.

Hannah

 

[Dennis]

Re: Anyone use Byetta?

i'd like to know if its taking me longer to get used to byetta because i dont take injections every day? only work 8hrs a week and felt awful at work last wednesday and do not want to be off work. all advice welcome thanks

Hi Shazscot,

Who told you not to take it every day? Byetta only works if injected twice a day, every day. If you are only injecting on occasional days then
a) it won't work, and
b) your body will never acclimatise to it.

As regards bread, I have never had it confirmed by Eli Lilly (as I guess they have never researched it) but I have heard quite a number of people say they feel more nauseous after eating something high in carbs (like bread) and less so after eating a high protein dish (like eggs).

 

[shazscot]

Re: Anyone use Byetta?

hi hannah and dennis thanks for replies. no one ever told me not to take byetta but for different reasons i have missed it quite a lot since i started it. if i feel really bad after morning injection i do not feel up to taking it in the evening. i have not been taking it on the two days i work. have a little cleaning job on a tuesday morning as well so take injection before lunch and end up in bed feeling bad 1 hour later so normally skip evening 1. i have appointment at diabetic clinic september 7th i will try to take byetta correctly until then. i agree with hannah about too many changes so will stick with nimble for time being. i am sure my doctor would give me a sick note but really do not want to go down that road if possible. shaz

 

[jaxbrit]

Re: Anyone use Byetta?

Hello all, I have been given Byetta by my doctor on NHS. I have now been taking it for four days. I have stuck to the instructions and so far, have lost five pounds and not had any side effects. I hope I'm not talking too soon but no nausia etc.
I didn't get any physical instructions on the injection as the nurse wasn't available so went on and thought, if children can inject themselves, I can. Very simple and no problems. I was really apprehensive, especially about having injections but I can tell anyone out there who may be considering it, go for it. I realise it may not suit everyone but it's got to be worth a try and I reccoemend it, albeit at this early stage.
Jax xx

 

[mammacaz]

Re: Anyone use Byetta?

If you feel sick the best thing to take is:

1 Teaspoon of Cider Vinegar in half a cup of warm water.

Just drink it slowly, but I can assure you that the nausea goes and you will feel brill.

I am on Victoza/Liraglutide and it had the same side effects as Byetta (it is a similar drug) and
I was fed up with the 'eggy burps' and I can honestly say that within 10mins of drinking the cider vinegar I felt the best I had since I started on the treatment.

I know that some people are going to say what c**p but it is true, I would not recommend it otherwise.

It acts on the bile ducts and cleanses your kidneys as well, you will also find that you will want to perhaps piddle more.

If you want more info: http://www.healthrecipes.com/apple_cider_vinegar.htm

 

[welshbunny]

Re: Anyone use Byetta?

Its strange. I have been on byetta for 9 days, have lost no weight and found my blood sugars are higher. However, am going to stick with it and see what happens. Have slight nausea but not too bad, just take ginger capsules as recomended on this thread somewhere. Appetite definitely decreased so hoping for weight loss soon.

Have heard that women are affected by nausea and sickness more than men.

welshbunny

 

[humph]

Re: Anyone use Byetta?

Just an update.

I have been on the 5mcg pen for seven months now and for the first time, apart from some indigestion, I have had a couple of days nausea and at last some weight loss. Seems sticking with the 5mcg has paid off.

I also see my consultant in a couple of weeks, will be good to see if my amylase level has returned to normal, high amylase levels along with either abdominal pain or ct scan results are an indicator of acute pancreatitus. I have not had either of the other indicators and my consultant thinks the reading will return to normal. Normal is 21 to 100 UL, mine was 400.

I would advise anyone on Byetta or similar to try and get their GP to do an amylase test along with their normal blood test.

Apart from this scare Byetta is working well and I am glad my consultant has gone with the experience of use in the US and not the dumb NHS approach.

 

[welshbunny]

Re: Anyone use Byetta?

Today was the worst!!!! Felt so ill could hardly move off sofa, eventually I threw up. Tried the cider vinegar in warm water and it wasnt as bad as I thought, and eventually it settled my stomach.

Couldnt face a byetta injection before my tea, it is making me feel so sick I cant swallow the tablets i need to take.

Will try again in the morning.

Welshbunny

 

[mammacaz]

Re: Anyone use Byetta?

Hi Welshbunny,

How are you feeling today????

Carolyn

 

[welshbunny]

Re: Anyone use Byetta?

Hi and thanks for the concern. Injected this morning then had breakfast and went out and felt really yuk. It wore off about one o clock but it does make you not want to do the next injection. Still no weight loss yet other people lose weight immediately. I dont know what to do. Before i started it I had started on Acai Berry supplement, and felt so well and for some reason blood sugars were really good.

Like I say will carry on for a little time, buy I have two family members I have to drive to and care for so cant drive when feeling really yuk let alone do things for them!!

Anyway think I will stay on it for the whole month then see how I feel.

Welshbunny

 

[peecee]

Re: Anyone use Byetta?

Hi Welshbunny, try and stick with the byetta, i had both nausea and diahorea for my first 5-6 weeks but both symptoms have now gone in week 8. I'm suprised you've not had any weight loss as i believe the majority on byetta do lose weight albeit in varying amounts. I was told by diabetic nurse at hospital to inject into my legs instead of the stomach if nausea was too bad it's supposed to help. Hope you start to feel better soon.


Phillip

 

[shazscot]

Re: Anyone use Byetta?

hi welshbunny i empathise with you. i have missed evening injections if ive been bad after morning. yesterday was not bad at all, am only taking 5mg at moment and had 1 slice of nimble and did not feel sick. had same today and did feel sick i tried the cidar vinegar in warm water and felt better quite quickly. i have lost 2 st and hope you start to lose weight soon i wish you well and hope to read that you are feeling better soon shaz