BYETTA

See the thing is basically I'm stupid. I know what not to eat and all that but when my mood plummets something just goes wrong. Its like a switch and I just want to sabotage myself. I look back and I can see that but it still doesn't seem to help.

susiewoosie said:

See the thing is basically I'm stupid. I know what not to eat and all that but when my mood plummets something just goes wrong. Its like a switch and I just want to sabotage myself. I look back and I can see that but it still doesn't seem to help.

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Hey Susie.
I know that feeling too. I've been there, a while ago I know, so I do know how you are feeling. It will improve. You will feel better. Don't look back.....keep looking forward. You know you have friends on here, we will help and support you. Stay positive Susie.....it worked for me.

Ken.

Thanks Ken

Sue I know that feeling too. Tiredness does it for me and then add hunger and all my good intentions go out the window. Then I feel down and it all gets out of hand. I'm very envious of your 1 stone loss though, well done it shows you can do it. I hope that in a couple of months I shall be reporting a 1 stone weight loss too.

Maybe another couple of stone and it will actually look like I've lost weight sigh

Good luck SW. My view is any loss is good and as I said in my email, better 1 stone off than 1 stone on. Thanks for the guide to carbs. I once (pre diabetes) did the Atkins diet, lost loads of weight and felt great but as there were so many bad reports I stopped and then of course weight piled on. I tootled round Tesco today and read a few labels and it horrified me. So anyway I have a week off work now and am going to use the time to sort out my diet and maybe try cutting out a lot of the carbs I eat prior to starting the Byetta. I wont have any trouble making sure I eat enough of them for the Byetta. My date for the training course is now official in writing, 9th June at 9.00 am.

I can't believe its taken this long for you to get Byetta. I must have been very lucky.

Yes it has been a bit of a fight and I feel as though I've had to jump through hoops. My GP's nurse wanted me to have it around January time and so far I have had an appointment with the community diabetic nurse and then the consultant in April, then another nurse and since then have been waiting for this training course. I did try very nicely to ask why it was taking so long and the nurse at the hospital got rather stroppy with me but it did serve to bring my training course date forward from July 23rd to June 9th. I do have several foreign trips booked for the next few months so I am wondering how I'll get on with injecting on planes and in restaurants. My husband is not all that sympathetic to my dietry needs either and it really annoys him when I state I have to eat. He just can't understand what it's like especially if I'm on the verge of a hypo. So I do feel i have to manage this alone. Hopefully if I lose my appetite a bit it will make life easier.

I don't see why you need a training course. My diabetic nurse came out to see me (I suffer from agoraphobia) with her little panda toy and showed me how to inject. Then she went through how to prep the pen. She was with me for about 30 minutes and I would say that 10 - 15 minutes were spent nattering.

As for getting Byetta, my nurse at the doctors arranged for the diabetic nurse to come see me. She came out to see me about 22nd Feb and explained whet Byetta was. The nurse at the doctors was talking about insulin but Barbara (DN) thought that Byetta would be better for me with my weight issues. She then went and spoke to the consultant who agreed that it would be a good idea, then she spoke to my doctor who agreed as well and sorted out the prescription. Then she came and saw me on 8th March and I started that afternoon.

I just think that I've been very very lucky.

I was talking to my pharmacist who asked his 6 patients who are on it about their experiences. 3 got it the same day from their GP and the other 3 had to see the consultant but it was all done and dusted within 2 to 3 months. It will have taken me 5 months to get it (I'm assuming I get it at the course). So I think your experience was normal and mine isn't. I believe that the first mistake was sending me to the community diabetic nurse as she knew nothing about Byetta. My GP's nurse thought she would be able to give it to me. It delayed the request for a consultant appointment. Then when I replied by phone to a letter asking me to attend another appointment to teach me how to use a blood glucose monitor my message was not passed on and they assumed I was ignoring requests to attend. I was told on the phone that as I had a monitor I would not need to attend. The training course is actually over 2 days for 2 hours each time so it will be interesting to find out what we will be doing during that time! There are usually 6 people on each course held once a month, however because I made a bit of a fuss over their mistake in passing on my phone message, there will be 7 on my course.
It does seem odd to me that within the same health authority there are different ways of getting this drug and I can't help but wonder why my GP couldn't have just prescribed it for me in January.

Jane,

I do hope you get your wish and get Byetta. Since I started on it on 15th April I have lost 7Kg (1st 2lB).

I have not particularly adjusted my lifestyle - it's just that Byetta has put me off food to a certain extent, I almost have to force myself to eat. If I do overindulge it increases the nausea and/or gastric reflux, so the drug is acting as a deterrent.

It was quite noticeable that the 10mcg is the proper dose - my numbers became much tighter and have not strayed outside the "normal" range since I went on it about a month ago.

I had rather shaky grounds for going on the drug (other than weight control - my BMI was >35) - my HbA1c was very good (<5) and all my trigs were excellent. These good numbers were, however, achieved at the cost of constant hunger and frequent hypos - I was on a Lantus/Aspart regime. I say "was" because I have now ditched the insulin completely and my own body has regained control - with the help of Byetta, of course.

My weight was previously managed by Orlistat, but this had unpleasant side-effects and the effect seemed to wear off and my weight dropped from 114Kg and then stabilised at 104Kg and was starting to increase.

I do hope that your clinicians make a decision soon - I too had some difficulty in persuading mine, mainly because of 1. Ignorance and 2. Perceived cost.

Sadly, in considering cost, the medical establishment seem to take a short term view. They think that diabetes costs such as blindness, kidney failure, heart disease and amputations are someone else's problem in the future.

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Thanks jpg. It's good to hear stories like yours - keeps me positive. Thankfully it has been agreed I can have it. I saw a lovely consultant on April 22nd (my birthday) and she told me it could make a huge difference to my life. I just have to wait for this blasted training course. It's next week now so nearly there. My last Hba1c last October was 10.5. Actos was a nightmare and I suffered from extreme hunger and hypos daily. My weight shot up. So now I just have the SR glucophage and modified release gliclazide. I think if they did my Hba1c now it may have come down a little but I have spent most of this year feeling exhuasted and vile. My weight is still increasing although at a slower rate, I just feel so hungry all the time and when I have been working it is so hard not to dive into all kinds of bad things when I get home.
Of course I want my BG to be improved but the thought of shifting some weight is such a mood lifter. I didn't used to be so hefty and I hate it.

Hi,

I've been on Byetta for about 2-3 months now with mixed results so far - my BG levels are great having gone from the high teens back to around 6-8.

The problems are with all the side affects and coping with them. The main one, as most people seem to have is the nausea/bloating/no appetite. From what I can pick up from the Byetta web site and various other web sites I have been able to find these feelings do seem to lessen (or disappear) for many within a few months.

Can anyone give me any tips on either lessening the affect of the nausea or how to speed up its disappearance if possible. Although the not eating is fine for now as I have shed quite a bit of weight (nearly a stone I think) it is starting to really cut into my normal routine - such as having a normal meal with my wife, or visiting family for a Sunday roast for example (neither of which I have been able to do since I started taking it).

I also seem to suffer from dizziness, cold hands & feet (no matter the temperature) and occasional shaking or jitters. While not as much of an issue as the nausea it would be great if someone had some tips on how to control or lessen these as well.

Apologies if these have all been asked before but I'm at work and ploughing through 113 pages of text is a bit too time consuming for me to be able to do it properly.

Many thanks

Mark

If you do a search (top right) on 'Nausea' of this forum area you will get 16 pages of information all with Nausea in the body of the tesxt. There are many posts relating to the subject, have a read.

Ken

Hi All

Just reading the last few posts and I are having a similar time.

I went to see my nurse at my doctor in April. She then referred me to a diabetic dietician who i managed to see at the end of April. She sent me away with a diet leaflet and asked me to look at portion control and try to lose weight (Which I am doing) and she would talk to diabetic nurse as she couldnot prescribe Byetta.

I have now received an appointment with the Diabetic Dietician at 9.30 on the 15th June and Diabetic nurse at 10 on the 15th June, so hope fully they will be happy with what i have done.

I have also got a nurse appointment at my doctors at 2.30 on the 15th June to check my blood pressure and weight.

Why can’t one person do the lot, I certainly would cut down on wages bills.

Fingers crossed for the 15th, I will let you know how I get on.

Catherine

Good luck with it Catherine. To date since January I have seen - GP, GP's nurse, community diabetic nurse, GP's nurse again, consultant, another nurse to do BP and weight, another nurse to chat about the things the doc told me, dietician, another nurse on the phone who wanted to teach me how to use a blood glucose monitor which I have been doing for a year, oh yes and another nurse on the phone who hadn't got the message from the other nurse re the monitor and I still don't have the Byetta which they wanted me to have in November and I have been actively persuing since January. All of them say they want me to have it but actually getting it seems elusive. I think (although I'm not counting on it) I may get it when I go on this training course next week. As you say the wages bill for all these people must be huge and others who tell their stories here don't seem to wait anything like as long or see the long list of people. All this time my Hba1c has been 10.5 without anyone helping me to do anything about it. I can't tell you how frustrated and fed up it has made me.

Dennis said:

Hi all, This is my first post on this blog - type 2 for 5 years and about to start using a combination of Glucophage and Byetta. I know that Byetta is only recently licenced for use in the UK so wondered if any of you have any experience of it?

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I've been on Byetta over 12 months at first it was great my weight come down but my control was out of the window, at the moment i'm on Novamix 30 = 300 units a day metformin S/R 4 tablets a day & Byetta 20 units a day my fasting bm in a morning is between 9 & 15 cannot get it any lower my weight is climbing out of control my diet is the same I have changed nothing.
I'm due too see the diabetic nurse next week I'm hoping they will take me off the byetta & let me get back to Humalog fast acting & Lantus Glargine where I did have good control & my weight was coming down at a steady pace but not fast enought for the hospital.

Byetta and side effects

Hi everyone,

I've been on Byetta for a round 3 weeks now and initially was doing well regarding side effects just a bit of nausea but the last week i've felt lousy some of my side effects include feeling sick, jittery, diarrhea, bubbly stomach and peeing less funny taste in mouth etc. Does this mean that i'm not suited to it now for some reason? I have definatly noticed an increase in my appetite which is great, it's just the nausea feeling is getting me down.
Does anyone know how long side effects can last please?

Thank you in advance,

Michelle.

Re: Byetta and side effects

SeaChelle said:

Hi everyone,

I've been on Byetta for a round 3 weeks now and initially was doing well regarding side effects just a bit of nausea but the last week i've felt lousy some of my side effects include feeling sick, jittery, diarrhea, bubbly stomach and peeing less funny taste in mouth etc. Does this mean that i'm not suited to it now for some reason? I have definatly noticed an increase in my appetite which is great, it's just the nausea feeling is getting me down.
Does anyone know how long side effects can last please?

Thank you in advance,

Michelle.

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I am presuming that you are on the 5 mcg dose at the moment ? The reason that you are on that is to allow your body to get used to what is a pretty powerful drug and for the possible side effects to settle down, if you have them. Only then will you move up to the 10 mcg dose.

Some people have little or no side effects as I did. As to how long it will take for it to settle down.....who knows....everybody is different. It doesn't necessarily mean you are unsuited to the drug, you just need to give it time.

This is where you have confused me a little.......

I have definatly noticed an increase in my appetite which is great.

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Byetta is a very effective appetite suppressant so not sure if that is just a mistake or something. Can you clarify that please ?

You haven't mentioned anything about your post meal and fasting Bg levels......do you test regularly ?

Ken

Hi Ken,

Sorry i meant 'decrease' in appetite. Yes i'm on 5 mcg at the moment and my doctor has already prescribed the 10 mcg dose pen for me. I have to be honest that i haven't been testing as regularly as i used to but my blood sugars are definitely lower than what they used to be, i took my blood sugar about 10 minutes ago and it was 8.3 as opposed to around 16 before i was put on byetta.

Michelle.