BYETTA

Help required!

I have been on Byetta now for 12 months and lost 20kg. I had to give up on the 10mg dose due to hypos and nausea so severe I could hardly eat anything.

My weight loss continued but I am now stuck on 79 kg; my target weight is 70kg.

I have gone from a size 18-20 to a pre insulin size 14 which I am delighted about. I still take 15 units of levemir in the evening and my weekly average b.g reading is 6.7.

Has anyone else reached a plateau weightwise and managed to kickstart the weight loss again?

I have increased my activity level and stick to max 30g carbohydrate per meal with no snacks.

I would be grateful for any ideas.

cariadgypsy.

IMHO when the weight loss stalls, you need to know your calorie intake. Are you eating too many calories or not enough? If it is not enough then your body hangs on to the weight. Too many and you will not lose weight. The carb levels are obviously important for diabetics and we do vary in how many we can safely eat, but so are the calories.

I'm still only on my second Pen Injector of Byetta , I have already lost 26Kg in the time I started taking Byetta and Metformin ..

I was having a Problem with my Levels dropping in the evening I had a 3.6 3x 3.8 and a 3.7 , it freaked me out so I asked my Nurse as I was just about to go on the 10mg dose , she told me not to worry as the Byetta would not make my BG drop really low , although I had some under 4 BG tests , I never really had any Hypo symptoms I felt a little sick and that was it ..

My nurse told me that I would probably need a snack to see me through the night we agreed on a slice of toast at 9:00pm , and told me not to test to often as I will make myself paranoid , she test if you feel the need to but don't get carried away , so for the last 3 weeks I have had my Toast and only tested twice , both times fine ..

The weight loss seems to easy and to good to be true with Byetta , as I went on a big diet 6 years ago and lost a lot of weight but it was hard work and I kept it going for two years and a bit .

But I hit hard times losing both my Parents within 9 months and I put it all back on , but this time round t are flying and I havent felt rough for ages , and as im new to all these changes since |Diag just about 2 months ago Im waiting for my body to adjust , and im not even exercising much , just do a bike ride every saturday and ride to work 3 miles only..

Im 100% byetta has really made my dieting a lot easier , so I wonder if I get this wieght loss stopping on me how it will effect me ?

so far for myself since becoming Type II I onlky have postives , I cant think of one negative yet its been the kick up the bum I needed to get my life on the right track ..

Dave

Have posted under other headings with no response so will try here. Has anyone used Byetta with an existing renal problem. Surely there must be someone !!!! I am not having problems using Byetta and side effects are mild - only used for 4 days so far - but am terrified that I am heading for more renal problems. Please let me know is this is you also - my renal failure is moderate at the moment. Thanks.

barleymo said:

Have posted under other headings with no response so will try here. Has anyone used Byetta with an existing renal problem. Surely there must be someone !!!! I am not having problems using Byetta and side effects are mild - only used for 4 days so far - but am terrified that I am heading for more renal problems. Please let me know is this is you also - my renal failure is moderate at the moment. Thanks.

Click to expand...

You were answered in another section about the Renal connection and possible problem for you which so far is all we have and advised to discuss it with whoever prescribed the drug.....as to whether there is anybody here who is in the same situation as yourself.......??? They may see your posts and answer you but we cannot possibly tell you when or if they will. You have to be patient.

We know you are looking for somebody in the same situation but so far it seems we don't have anybody.......you may be unique.

thank you for your replies to both posts. I have spoken to my GP and nurse but neither has any experience either with patients like myself. They both advise to carry on until first blood test and then decide. I know from past experience that the views of people in the same boat are most important and they are probably the only people who can give an answer. If I am unique then I think I must stop but I will keep hoping I am not alone. I should add that my husband was a dialysis patient and I really do not think I can go down that road unless no alternative - a little knowledge is a dangerous thing. Now I will just be patient and see what happens

barleymo.

I sympathise with your position but I can't help wondering why if your GP and Nurse haven't a clue why you haven't been referred to an Endocrinologist who deals in these things ? Who was it who actually prescribed Byetta ? Surely they must have done tests to determine your eGfr rate which is VERY important for someone like yourself with Renal problems.

I really do think that you need a second opinion regarding this. It is too important to be left to the vagaries of a blood test in a months time. It should be an eGfr test NOW.

I have been monitoring this thread for around a couple of years and I cannot recall anybody that has even mentioned Renal problems here. The only mentions are here in yours and mine posts, so let's hope there is somebody here, but they haven't mentioned it before.......

There may be one Member here but I cannot remember the name ???

Thank you for your reply - consultant at hospital prescribed Byetta and my GFR is 49 which is supposed to be OK. Problem is it goes up and down without any effect on me so I don't know if it is up or down. There is no way I can get a blood test before 24th both dr and nurse refused earlier test as they say too early to see if any effect. Cannot tell you the turmoil inside my head. Only lost my husband 8 months ago so a lot to deal with - just have to wait and see but would still love to know how others coped. Still always knew I was unique !!!!

eGfr of 49 is just inside the level to use with caution, however if it was a Consultant that prescribed it then that indicates someone who hopefully knows what they are doing. That level would also indicate Stage 3 CKD.

I think TBH because you are so worried about this why not phone the Consultant tomorrow and seek some re-assurance regarding this. It is obviously troubling you, stress is just what you don't need when starting a new drug.

There is nobody here who can tell you that everything is fine and will remain so, we are all just Diabetic's like yourself. There are no medical professionals here. Even if there was a Member with the same problem....everybody is different and how a drug affects one person may be totally different to another.

As a Byetta user myself I know that it can work well for many people.......you just need to confirm it is safe for you, to satisfy your own mind. Give you some confidence. I hope you can get proper answers tomorrow. I am afraid there is little more I can add to what I have posted already.

ATB.

Hi

I am on victoza its similar to byetta except its a once daily injection instead. I have a kidney disease called Focal segmental glomerulosclerosis that is slowly destroying my kidneys. At the moment my GFR is nowhere near as low as yours. But I did however ask about medications and progression of the disease eventually down to dialysis and was told that most of the injectables where safe pretty much up until dialysis. Again confirm with your own consultant but I imagine with close monitoring your condition can be managed successfully. I am on lots of different types of drugs and I know at times it can be very worrying, I have gone from perfectly healthy to being told I might not see 40 in a space of 2 years. The best thing you can do is write down any questions you have no matter how simple or silly they sound and always ask the consultants. Make sure you stay on top of your care as well if you think your worried about something or its not right let them know. The kidney specialists are especially good as they know as the diseases progress were going to be worried and have lots of questions.

Let me know if there's anything further and I will try and answer from my own experiences.

Thank you so much - my husband was a dialysis patient for 34 years so don't despair there is treatment - so why am I worried ??? Well we dialysed at home for 29years and honestly the stress involved with that is probably what caused the damage to my kidneys, remember 34 years ago dialysis was very different to now. So although I know how well it can work I am too close to it to cope with it. If your GFR is much higher than mine surely that's a good thing - wish mine was higher, I am so grateful to hear from you have been feeling really alone with so many questions going round in my head. Take care of yourself.

Re: BYETTA...Help help help

I just talked to,I guess, the diabetes nurse that I will be meeting when I go to the diabetes clinic in town and she said that if I haven't lose weight on Byetta then I can't be on it!!! Despite the fact that Lizzie has brought down my bs I won't be able to have it after July.

I am in a panic now to lose as much weight as I can and giving the credit to the Byetta.

I was supposed to go to the clinic tomorrow but I'm sick so I cancelled my appointment and this woman called me to discuss why I wasn't coming. A temperature and sore throat are my excuses. So she said that she still has to see me and that July is the earliest because she has to see me every 6 months. After several years of being ignored they are getting on my nerves. I wonder where my other diabetes nurses are.

I'm on metformin 850mg 3 times a day so what can they put me on? I am really upset about this.

I don't want to give up Lizzie, can I fight for it? I read on the Byetta website that it isn't taken to lose weight. I never lost weight with the metformin so will they take me off that too?

Any ideas?

descartesmum
The criteria for remaining on Byetta is as follows :

Continue Exanatide ONLY if the person has a reduction in HbA1c of equal to or more than 1.0 percentage point AND equal to or more than lost 3 percent of body weight in 6 months.

If you cannot meet that you may be able to argue your case but it is usually associated with weight loss for most users as it is a significant appetite suppressant. It should be pointed out that dietary changes are also required to initiate that significant weight loss.

In the circumstance I think I would postpone any appointments (I am sure you can think of excuses :wink: ) for a few months. Give yourself time to try and lose that elusive weight doing what I suggested above. Presumably your meds are on repeat so just keep getting the Byetta each month for as long as possible.......then when you have fulfilled the criteria get an appointment.

Thanks. I will try to lose weight. I have until July to do it. I never knew about the losing weight rule. After getting the Byetta several years ago as part of a research trial I was cast adrift and never saw any of the diabetes nurses nor the endo after 2 times.

*whispers* A couple of years ago I had to the states so asked for a double prescription of all my drugs including the Byetta. I now have enought Byetta for the next 6 months because they didn't catch the double prescription for the Byetta.

cugila said:

The criteria for remaining on Byetta is as follows :

Continue Exanatide ONLY if the person has a reduction in HbA1c of equal to or more than 1.0 percentage point AND equal to or more than lost 3 percent of body weight in 6 months.

If you cannot meet that you may be able to argue your case but it is usually associated with weight loss for most users as it is a significant appetite suppressant. It should be pointed out that dietary changes are also required to initiate that significant weight loss.

In the circumstance I think I would postpone any appointments (I am sure you can think of excuses :wink: ) for a few months. Give yourself time to try and lose that elusive weight doing what I suggested above. Presumably your meds are on repeat so just keep getting the Byetta each month for as long as possible.......then when you have fulfilled the criteria get an appointment.

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How much do you need to lose to meet those requirements and has your HbA1c dropped at all ?

Great idea that you have more Byetta stashed away, but if they officially take you off it it may be difficult to get back on it. I still think postponing appointments is a way to get some 'breathing space'. Play the 'system'........ :twisted:

Let us know how you get on......

I think I have to lose a lot of weight.

The woman mentioned July and the first woman I spoke to mentioned September for my next appointment.

The diabetes care we get where I live is dreadful and I always thought so and this just proves that they don't know what they are doing.

When I first heard of Byetta, via US sites, I asked the diabetes nurses about it and they never had heard of it. I had to show them the information. It took a year for it to come to these shores and that's how I got onto the trial in 2008.

I can cancel 2 appointments and then I get referred back to my gp.

just a little thought to add to several posts I have seen regarding information. I saw a consultant in diabetes who also deals with renal problems and who initially prescribed Byetta, then saw diabetc nurse for hour long info/use session - neither of them told me about the renal problem only saw that on internet. I think they are so focused on one thing that oher aspects are sometimes ignored. I am having only very mild side effects - nothing which stops my everyday life but the worry is always there. Would love a session with someone who understands the whole thing.

On the US Byetta site it said that on average people lost 4 pounds over 30 weeks so I'm thinking I need to lose, at the most, 39 pounds. But it does say that Byetta is not a weight loss product. Even they make us confused.

I am reading 'The 17 Day Diet' book so I might use that and start on Monday.

descartesmum said:

On the US Byetta site it said that on average people lost 4 pounds over 30 weeks so I'm thinking I need to lose, at the most, 39 pounds. But it does say that Byetta is not a weight loss product. Even they make us confused.

I am reading 'The 17 Day Diet' book so I might use that and start on Monday.

Click to expand...

I don't see any confusion........Byetta is NOT a weight loss product. It is not marketed as such. It is designed to regulate BG levels and it also suppresses your appetite. It makes your stomach contents empty more slowly which should make you feel fuller for longer. I know myself that I often cannot finish a meal so I eat less, especially at my two main meals each day. I have one small snack at mid-day and most days nothing else. I never feel hungry. Therefore there is a natural reduction of the calories consumed which together with much better control of my Bg levels also has resulted in weight loss. This is what happens to most of the people that use the drug.

I know that in Clinical Trials most users lost an average of around 6 pounds without any additional diet or exercise changes. However it has been shown that if you change your diet and reduce carbohydrate consumption, do around 30 mins exercise each day then weight loss is vastly improved. The drug on it's own needs to be used as an adjunct to this regime, otherwise weight loss will be slow. I lost over 5 1/2 stone in a year using this method which is similar to the advice that Sue and I hand out to newbies. You cannot just rely on the drug to provide the benefit of weight loss :

viewtopic.php?f=20&t=17088#p155405

I have no idea what your diet book tells you as I have never heard of it, is it specifically for Diabetic's ? Compare what it says to the advice given in the link I have provided. See how it compares.

I hope you succeed but be aware that nothing will work unless it is a combination, drug/diet and exercise......... I have seen many who think that Byetta is all they need, they are often disappointed. It should never be thought of solely as a weight loss drug, that is just a side effect for some........nothing more.

In this thread there is a surfeit of information, most things have been covered here......as for the US sites which discuss it we are seeing more and more US Members here as they think the information about Byetta is far better here than the US ones.........so do we !