BYETTA

[welshbunny]

I have been on Byetta 10 since February, having originally been on the 5 dosage, and feel that I am getting more and more nauseous as the weeks go by. I have been on the higher dose for 3 months now. I am losing my appetite which is good, but a lot of foods I used to eat, am now making me feel queasy to even look at. I am losing weight which again is good, but that is due to the fact that i eat very little because of feeling sick.

Has anyone else found that the nauseous affects of Byetta got worse a couple of months into it, and then eventually it went away. Its definitely getting worse and affecting my day to day living. I need some encouragement to keep going. I have tried the ginger biscuits, snacks etc, but nothing I have tried so far works on a permanent basis, just for very short time.

Would appreciate any words of encouragement and to hear from anyone who felt the affects got worse before they got better again.

Thanks

Welshbunny

 

[m4z]

I've been on Byetta a few months now, and got past the sickness, getting excellent readings on my sugar levels, losing weight etc.

But for the last month or so (two different pens) I've been getting raised red sores (like insect bites) at the injection site - normally 12 hours after the injection. I've changed the location from leg to stomach to other leg, and it still seems to get itchy and irritated.

Anyone else experienced this after using Byetta for a while?

 

[Patch]

I've managed to get my Trigs down to around the 5 mark (still very high - but they were up at 20(!) at one point) - so still no luck getting prescribed either Byetta or Victoza.

Has anyone experienced and trouble with higher Trig levels and Byetta?

 

[SUE P]

Aha - got here!!!!!

Well after a few miserable attempts at trying to log onto the forum I have needed to re-register as SUE P - I was SUSIEP but never mind I am back :lol:
I thought that i would update you on a couple of issues that have happened to me over the past few months -
1 - Some may remember that I posted a warning regarding low blood pressure and passing out - OK
I passed out in the shower back in August 2009 - not a good experience, I broke a toe, cracked my heel and cracked my cocyx - you may be asking SO....
I have lost a lot of weight 8 1/2 stone in total 4 since starting Byetta January 2009!!
I had been asking my diabetic team (not my diabetic specialist as she only sees me for my Byetta) to take me off the blood pressure tabs as I kept on going woozie headed - I kept on being told - you are diabetic, you need to stay on them - Anyway then I passed out..... Moral of my story - you know your own bodies - be firm because unfortunately since that fainting episode and having cracked and broken various bones (yes i also had a suspected broken ankle) 3 weeks ago I needed surgery to my shoulder and my knee - WHY - because when I passed out I banged my shoulder causing fragments of bone to give me real jip and totally jiggered my knee where it was bent underneath me again causing imense pain.
Am I angry - of course I am - this should not have happened, my diabetic team needed to listen me, I knew something wasn't right - needless to say I am no longer taking the blood pressure tablets!!!! but have had to go through the inconvienience of surgery.

2-Ever wondered what happens if you double dose on your Byetta???? please - not to be recommended.
I was on holiday 6 weeks ago, did my injection prior to going for breakfast. I truthfully thought that my syringe had not injected so I dialed up again and gave myself another shot - big mistake!!!!
I was on a cruise ship the resteraunt was at the back of the ship and our cabin was at the front (it was a big ship) 4 floors down - I ate my breakfast which was about the hour - said to my hubby i gotta go..... believe me if i had been in trials for the olympics I would definately have qualified - I got back to my cabin just in time.
Now this is quite graphic - but I think people should know.
I was violently sick (projectile vomiting - sorry folks) then I started to vomit bright yellow bile - believe me it was awful.
Once I had been sick I actually didn't feel too bad but decided not to take any further meds or injections for the rest of the day - I felt that my body had had quite enough thankyou.
When I returned home and i explained to my diabetic specialist she told me what had happened - it was text book.
It has been explained to me why my body reacted in this way - something to do with the byetta and digestion and the production of bile - but definately not to be recommended!!
SO if you don't think you have had a shot of Byetta - LEAVE IT!!!!
I think that is enough of me prattling on - nice to be back.

Sue

 

[cugila]

Hi Sue.

Not sure if I am glad you're back or not......... :twisted: Seriously, I know what you have been through and it reads and sounds nightmarish. I hope others here take note of what you have said.......a salutory lesson in many ways. I hadn't thought of you as in the Olympic Class of runners, I have a clear picture now, ............................wooooosh ! :lol: :lol: :lol:

Great to see you back, honestly. You know me. Only problem I have is there are so many 'flamin' Sue's on here I get soooooooo confused !!

Ken xx

 

[SUE P]

Believe me - once i get this physio out of the way there won't be any stopping me - as you know my goal is to loose another 1 1/2 stone so that cross trainer in the bedroom will be getting some welly :lol: So watch out!!!!

So many Sue's - too right - and i have to go and confuse it even more.

Seriously though your comment about people taking heed to what i have posted - I can not say this enought times - if you feel it ain't right then it most probably aint.
Know your own body - we are not text book cases - we are all individuals with our own personalities as well :wink:

 

[Jude]

Hello Patch

Are you on byetta or just wanting to be? I have been on it since April 2009 and many of my struggles have been documented on here!! However, 6 weeks ago my cholesterol was "heart attack waiting to happen" according to my GP and it was the trigs think they were around 10. Now I do not know much about this but I had stopped taking my statin (long story!) - am due bood test tomorrow and will be speaking to my GP on Friday so I will know if the statin which I recommenced has worked if it hasnt she says she is sending me to some academic at the hospital!! I must admit I never made the connection with byetta.

Will keep you updated. BFN Jude

 

[cugila]

I've managed to get my Trigs down to around the 5 mark (still very high - but they were up at 20(!) at one point) - so still no luck getting prescribed either Byetta or Victoza.

Has anyone experienced and trouble with higher Trig levels and Byetta?

Patch.
I don't quite understand, Byetta is not a Lipid Lowering drug........my Trig's etc are all in range. However I take a Statin and Ezetimibe to control those levels. No problem at all with Byetta.
Have I misunderstood your post ?

Ken

 

[jane22]

I find it very interesting to hear about everybody's experiences with Byetta. I am longing to have it and have been waiting since it was first suggested in Jan/Feb. When I finally got through 2 nurses appointments and then the consultant on 22nd April who agreed I could have it, I thought I was home and dry but oh no I now have to wait for a training course and they only do it once a month for 6 at a time. It looks as though I haven't been lucky enough to get on the June one. So it could be July and if not then I have booked a holiday for all of August so I will have the dilemma of whether to cancel some of the holiday or just fly home for a few days for the appointment or wait until September. I am trying to stay positive but with an hba1c of 10.5 and feeling vile most of the time I am hoping so much that this drug will improve my life a bit and I'm getting really impatient waiting for it. I really love to hear about how much weight all of you have lost. I need to shift around 4 stone. I find I am so hungry all the time it is really difficult to eat sensibly or cut back at all. I saw my GP's diabetic nurse about it yesterday and she is also exasperated at the wait but says there is nothing she can do. She already got the consultants appointment in April brought forward by about a month.

 

[jpg]

For anyone who has any doubts about Byetta's effectiveness I have attached this graph from the OnTrack app I have on my Android smartphone:

The graph shows my BG level vs time and represents all of the time I have been on Byetta. I don't have any graphs from before this time but I can tell you that my numbers swung wildly from less than 4 to 16 or above. I was on a Lantus/Aspart insulin regime and despite the wild swings (and increasing weight), my HbA1c levels were in the 5 to 6 region.

The first 4 weeks I was on the 5μg dose, and my numbers swung around a bit but there were no hypos (<4) and occasional swings to 10 or more (after the main meal of the day - in the evening). I slowly reduced my Aspart to zero over this time and my Lantus has now dropped to 8u (from 26u).

You will notice that on or about the 13-05 my numbers stabilised and there are far less swings. This coincides with the start of the 10μg dose. My numbers are now within the "normal" range of about 4 to 8.5 and my diet hasn't changed significantly. These are early days, of course, and I have yet to try some of the more explosive glucose generators, such as pizza, though I have to say I had a baked potato the other day and that usually send my figures into the stratosphere but it raised my BG to a fairly modest 8.

Of course the other good thing is that I have now lost about 10lbs in weight in just over 4 weeks, and I am thinking of dispensing with the meagre 8u of Lantus I am taking some time soon.

The only negative is a slight queasiness, with one or two bouts of less pleasant nausea, these were enhanced slightly with the greater dose but these side effects have not affected my ability to function in any way.

For those of you who are struggling with the medical profession to get prescribed Byetta, I had a similar problem with my GP and DSN, who refused even to contemplate it for some time, mainly IMHO because it was new and they knew nothing about it - it was a case of a knowledgeable patient showing up the inadequacies of their training, I reckon.

jpg

 

[gennie24]

Hi, I have been recently given Byetta, and my g.p. told me I am only the second of his patients on it. I got it by asking for a referral to the diabetic clinic at my local hospital. there i asked to be considered for VICTOSA (LIRAGLUTIDE). The consultant listened to my argument for it and said he saw why I wanted it, (it supposedly helps with weight gain problems, + lowers bp cos you lose weight ). Doc said I could try byetta first as victosa is more expensive and if I dont get along with victosa I would have no other option left.

I have been on Byetta almost 3 months and have lost 3kg in weight (every little helps)... at first for a month i was on 5 Byetta twice a day and then was to increase the dose to 10. twice a day, i thought this was a lot to double the dose so for 1 week i had 5 of a morning and 10 before evening meal, making a daily dose of 15 instead of 20 +this was best for me and i believe helped me to not be as nauseous. i only feel nauseous if it is more than half an hour from my Byetta shot to actually eating, I am usually fine tho.

I am glad to be on it. I do take a right old cocktail each day.. :roll: ..Gabapentin 300mg x 3 (for peripheral neuropathy in feet.) +Amiltriptyline 75mg at night so i can sleep without pain from feet keeping me awake. Metformin 500mg x4 (we all know about that.) +Perindopril and Amlodopine 1 of each for b.p. each morning. Glicazide 80mg x 1 per day for insulin stimulation and Simvastatin 40mg x 1 at night for lowering cholesterol (4.5) and last but not least BYETTA 10 x2 per day!!! It is nearly always medication time :lol: but such is life...and at least I have one :wink: 8)

 

[jane22]

I feel I have had to jump through hoops to get Byetta. My GP's nurse recommended it in January and I had to see a community nurse, then a hospital consultant in April and then I had to wait for a place on a training course. I was told it would be July 23rd but after having a minor hissy fit on the phone to the nurse they agreed to put me on the course for 9th June. Today I received a letter stating this would be a 3 month trial. My heart sank as I thought I would have this as long as it worked for me. Has anyone else received it as part of a trial and what usually happens after 3 months? Do you think I am likely to be refused it after this even if it works for me? I do feel quite upset that this has been so difficult to get and then if it works for me and I can't have it long term it seems almost cruel and better not to give it to me in the first place.

 

[cugila]

The reason it is given on a 3 month trial basis is to see if you are able to tolerate the drug, there are sometimes side effects which you may not be able to cope with. Then they have to see an improvement in your Bg numbers otherwise it is just an expensive drug being wasted. It helps immensely if you make changes to your lifestyle/diet at the same time. Don't just rely on the Byetta to do it all.

We all had to go through this process. So it isn't you being singled out.

Ken

 

[jane22]

Thanks Ken, if that's the norm that's fine. I was initially worried that it could be withdrawn even if it was working after 3 months. I have made changes to my lifestyle and hope that if I'm not so hungry making more changes to my diet will be easier. It's the extreme hunger I experience along with occasional hypos that make it quite difficult. I'm hoping that not being so hungry will give me a better chance. I have managed to lose a couple of kg's in the last month by upping exercise. Well it looks like I shall have a chance with this drug on 9th June, 5 months after I was referred for it so please keep fingers x for me.

 

[cugila]

Jane
As Byetta is a great appetite suppressant that should help you there, keep a close check on Bg levels before and after your meals. I have frequently gone into hypo land after a too small carb meal. It ususally needs around 20-30g per meal to work properly although I do sometimes get away with the lower end of the carb count.

Best of luck and keep us posted, any questions you know where we are. I shall definitely keep those fingers crossed for you.....makes typing posts a little difficult though..... :wink:

Ken

 

[susiewoosie]

Hey Ken

I'm still having problems with my carbs. I think this is more to do with my depression than anything else. On a good day I'm fine but when the depression hits then I just binge Also all the medication I'm on seems to help to increase weigh gain.

I know I will have put weight on this week as it was my birthday and there was an awful lot of cake and alcohol. I've lost just over a stone since 7th March and I'm really going to try and be at least semi healthy again from tomorrow. Slimming World red days for me I think.

Wish me luck or threaten to nag me if I don't start behaving. Do we have a weight loss section? If not do you think we could?

Sue

 

[jane22]

I have only ever had one appointment with a dietician a couple of years ago. She just gave me a few leaflets and showed me a healthy balanced diet. Well of course that was nothing new to me. Sticking to it when you are very hungry and have the signs of a hypo coming is the difficult bit! Any way I had no advice on carbs at all and don't know what 20 - 30g of carbs would be. At the moment I just yearn for carbs all the time so I wouldn't mind betting I exceed this all the time. Years ago I did the Atkins diet and lost considerable amounts of weight while feeling on top of the world and full of energy but so many people told me to stop as it was in their opinion an unhealthy way of eating. I have felt pretty lousy and tired for some time now and the weight has crept on again.
What would constitute 30g of carbs. Is it literally a potato, pasta or bread etc weighing 30g? 30g doesn't sound all that much to me!

 

[susiewoosie]

Hey Jane

I have a list I could send you if you want.

Sue

 

[cugila]

Hey Ken

I'm still having problems with my carbs. I think this is more to do with my depression than anything else. On a good day I'm fine but when the depression hits then I just binge Also all the medication I'm on seems to help to increase weigh gain.

I know I will have put weight on this week as it was my birthday and there was an awful lot of cake and alcohol. I've lost just over a stone since 7th March and I'm really going to try and be at least semi healthy again from tomorrow. Slimming World red days for me I think.

Wish me luck or threaten to nag me if I don't start behaving. Do we have a weight loss section? If not do you think we could?

Sue

Hi Susie.
Come on girl, get back on track, think of the nice new clothes you will be able to get into. Mind you , you will need a part time job to pay for the stuff..... :wink: Right ....enough nagging ! :shock:

Look, you have lost weight before, a stone. We all get the munchies from time to time, we just have to not let it get us down and try a bit harder next time. Try not buying the cakes and stuff....if it 'aint there then you can't have it ! I TRY to stick to that rule .... :roll:

As for the weight loss section...not so sure as some of these diet plans (online) might not always be the best for a Diabetic. You have to be very careful what you eat in the way of carbs. We prefer to hand out our newbies guide instead, both Sue and I post it here. Not sure if you have read it ? That also is a good plan for weight loss too. We really prefer to concentrate on Diabetes matters although we do branch off into many other areas, sometimes some very odd ones too. :roll:

Happy belated birthday too.

Ken

 

[cugila]

I have only ever had one appointment with a dietician a couple of years ago. She just gave me a few leaflets and showed me a healthy balanced diet. Well of course that was nothing new to me. Sticking to it when you are very hungry and have the signs of a hypo coming is the difficult bit! Any way I had no advice on carbs at all and don't know what 20 - 30g of carbs would be. At the moment I just yearn for carbs all the time so I wouldn't mind betting I exceed this all the time. Years ago I did the Atkins diet and lost considerable amounts of weight while feeling on top of the world and full of energy but so many people told me to stop as it was in their opinion an unhealthy way of eating. I have felt pretty lousy and tired for some time now and the weight has crept on again.
What would constitute 30g of carbs. Is it literally a potato, pasta or bread etc weighing 30g? 30g doesn't sound all that much to me!

Jane.
You really do need to take a look at Sue and I's newbies guide which explains things better. Here it is.
Get a set of decent digital scales, a carb counter book, a calculator and weigh everything till you know exctly what things weigh and how many carbs are in something.

All you need to do to work out the carb content of say a potato, is weigh it, maybe 170g.
Find the carb content per 100g from your carb counting book, say 17g.
With those figures you then divide 17 by 100 then multiply by 170, this gives you the number of carbs in one potato.....28.9g carbs.
You will soon see how quickly the carbs can add up

Here is the advice we usually give to newly diagnosed type 2 diabetics.This forum doesn't always follow the recommended dietary advice, you have to work out what works for you as we are all different.

It's not just 'sugars' you need to avoid, diabetes is an inability to process glucose properly. Carbohydrate converts, in the body, to glucose. So it makes sense to reduce the amount of carbohydrate that you eat which includes sugars.

The main carbs to avoid or reduce are the complex or starchy carbohydrates such as bread, potatoes, pasta, rice, starchy root veg and also any flour based products. The starchy carbs all convert 100% to glucose in the body and raise the blood sugar levels significantly.

The way to find out how different foods affect you is to do regular daily testing and keep a food diary for a couple of weeks. If you test just before eating then two hours after eating you will see the effect of certain foods on your blood glucose levels. Some foods, which are slow acting carbohydrates, are absorbed more slowly so you may need to test three or even four hours later to see the affect that these have on your blood glucose levels.

Buy yourself a carb counter book (you can get these on-line) and you will be able to work out how much carbs you are eating, when you test, the reading two hours after should be roughly the same as the before eating reading, if it is then that meal was fine, if it isn’t then you need to check what you have eaten and think about reducing the portion size of carbs.

When you are buying products check the total carbohydrate content, this includes the sugar content. Do not just go by the amount of sugar on the packaging as this is misleading to a diabetic.

As for a tester, try asking the nurse/doctor and explain that you want to be proactive in managing your own diabetes and therefore need to test so that you can see just how foods affect your blood sugar levels. Hopefully this will work ! Sometimes they are not keen to give Type 2’s the strips on prescription, (in the UK) but you can but try !!

As a Type 2 the latest 2010 NICE guidelines for Bg levels are as follows:
Fasting (waking).......between 4 - 7 mmol/l.
2 hrs after meals......no more than 8.5 mmol/l.
If you are able to keep the post meal numbers lower, so much the better.

It also helps if you can do 30 minutes moderate exercise a day. It doesn't have to be strenuous.

Ken/Sue.