BYETTA

The hospital control was the disappointing part of the trial, it was noticed that my Hba1 was slipping at my last (early July) appointment, however I was advised to continue with the Byetta trial. By August I was getting consistently high bg levels so went to my GP for advice, who referred me back to the Hospital as for Diabetes I am their patient , I managed to eventually get through to a DSN who advised me to split the insulatard dose between evening and morning, however it made a bit of difference but not sufficient, since August I have had to wait for today's appointment to get something done about my loss of bg control.
When I pointed this out to the Dr. she advised me that the DSN's are all changing at the moment as due to the "cuts" longer served staff are being asked to look at and take early retirement. One of the DSN's takes early retirement next week :cry:

As for the Byetta itself, it allowed me to more than halve my insulatard dosage, up to July, but since then to gain reasonable bg levels I have had to add more and more insulatard, despite taking up a rigorous exercise regime 3 or 4 times per week. I still believe Byetta is a marvellous development, just one of the many new treatments being developed to help with the disease.

Hi bobthedog, I had an interesting conversation with my consultant this week. It did put the dampers on my success with Byetta a little. I have lost 15 kg in 4 months and she was pleased with this but says it is essential to lose at least this much again in order for the Byetta to go on workng as long as possible. She said Byetta is not for life and will be of no use once my beta cells have died. She said that although nothing is guaranteed they are likely to last longer if I am not over weight. It has jolted me into losing weight again. I felt pretty good with the 15kg off but now the pressure is back on. It seems that frequent testing of my BG levels is partly to spot any rising trends. She seemed certain that I would eventually be on insulin and that worries me so much.

Jane, your comments about the beta cells are interesting, nobody has mentioned that to me in the entire trial, although I did read something about it a couple of weeks ago. The way the doctor described the issue with Byetta/Insulin is that it is uncharted territory, and the longer term impact of using a combination is still under evaluation.

Good luck with the weight loss, 15Kg is an achievement. You are right to avoid insulin like the plague, much better if you can shift some weight and help to manage the condition that way, insulin packs the weight onto me - I added 20Kg in the 3 years I have been insulin treated, despite being very active a swimmer, walker and a keen cyclist.

Yes the discussion about my beta cells dying off totally has put the fear of god into me really. I really wish all of this had been properly explained to me when diagnosed about 5 years ago. I didn't take it as seriously as I do now and then when I was eventually given Actos the weight piled on and it was so hard to do anything about it and anyway I just felt rubbish. I'm just grateful I was given the chance of Byetta before I was put on insulin although it was at the point where it had to be one or the other. The consultant explained that there are some people for who Byetta is useless, those who have very few beta cells still alive and had I been one of those she wouldn't have prescribed it for me. So now it is my job to try to slow down their death and the only way is to lose weight although even that is not a guarantee.

bobthedog
I'm interested to know a bit more about your problem with the Byetta. I notice you mention lots of exercise but nothing about diet ? Are you following any sort of diet along with the meds ?

Jane
Well done with your weight loss. I suppose your DSN may be right if your beta cells pack in but I dont accept that it is a foregone conclusion if you get good control. My Endo seems to think that it can and may be for life - somewhat contradicts what was said ? As you lose more weight so your bg control should also improve - as mine has to the extent that all medication has been reduced drastically. So there is light at the end of the tunnel. !

Cugila thats a fair question.
On diet I am really lucky, my wife is a qualified dietician, although no longer practising. We are not strict on diet per se, having said that I avoid the obvious things that I should and dont drink. If Im guilty of anything it may be too much carb, something I shall now be concentrating on reducing with the fast acting insulin regime.

I just hope yours is right Ken! I was feeling quite chirpy with how it was all going - the weight loss and an hba1c of 6 along with really good BG levels whenever I test. I find it so easy now to eat a lowish carb diet and I enjoy little bits of really nice food instead of loads of junk. The endo was really pleased with my weight loss etc but with a BMI of 32 it is not low enough and she looked at me seriously and said Byetta is not for life so you must make the most of it while it still works and shift that weight. Maybe she was trying to shock me into it as I have reached a plateau and maybe was feeling a bit complacent. I supppose as this is such a new drug they maybe don't know enough about long term usage. She was adamant though that for many people and especially those who do not lose weight the beta cells will die. Anyway it has done the trick and I have tightened up the old diet again and this week another kg has dropped off. I have also made sure I do the daily bit of exercise which is all too easy to avoid. I was hoping she would suggest I stopped the gliclazide but she wants me to continue until I start having more hypos and my before meal BG's are always in the 4's or 5's. They mostly are in the 5's but sometimes in 6's.

Ladies first ......

Jane
I hope so too. I've been with him for nearly 10 yrs and trust him implicitly. Everything he has said or done up till now has been proved right. Unfortunately none of us has a crystal ball !
Just keep the motivation and willpower going. Hopefully your weight loss will keep going and you will drop the BMI. Maybe your Endo was trying to frighten you ? However, me - I prefer facts and figures. Not scare tactics. Maybe she was trying too impress on you that Byetta can be discontinued if the Patient doesn't achieve certain targets in a certain time ? Both improvements in Bg levels AND BMI levels need to meet the targets. Who knows what she was getting at but Beta cells do not always fail - control determines what happens to them, not time.

Reduce the carbs down and stick with it. Leave the treat till you reach your goals. Make each goal achievable - then add another and so on. That's all I did. Made the end of each month a pleasure.

Bobthedog
Diet ? I hope you take this in the spirit intended !
Many of us followed dietary advice from Dieticians and DUK which quite frankly was totally wrong for many of us. I followed advice from dieticians which nearly killed me. It wasn't until I came to this Forum and realised that many of the foods I had been told to eat were some of the worst things a diabetic could have. I hope your wife is one of the enlightened ones and that your diet is the best one for you to follow.

Take a look at the advice Sue and I give out to newly diagnosed diabetics in the 'Greetings and Introductions' thread. Tell me if that is what you do .......

Yes, we do follow on your advice, having said that like you it is nearly 14 years since original diagnosis, where I rapidly lost 25 Kilos weight in 2 months, and at christmas too. The advice I remember at that time was to have plenty of carbs, and advised to avoid the obvious sugary foods (not that I was consuming much of that type of food). At that time I was only taking Glibenclamide if I recall correctly, I was taking the tablet in the morning and suffering symptoms of hypo by 10'oclock. The doctor refused to stop or lower the dosage of the pill. This was before I left UK for 10 years to work in Holland, and switched doctors and treatment types, and at the same time met my now wife.

The Dutch GP dismissed the UK GP's prescribing and put me onto Metformine, it turned out that diabetes was a particular interest of his. At that point he advised being careful with carbohydrates. He also placed me under the care of his own practise's dedicated diabetic nurse, and for the duration I was well under control and treating the condition with Metformine and eventually Amaryl. It was not until I returned to working UK in 2006 that I became insulin treated.

Byetta - some advice please

Having just started on Byetta and having none of the normal side effects so far has anyone noticed that they are getting very tired during the afternoons?

Re: Byetta - some advice please

Hi there. I find that I'm not as tired as when I had high BG's in the afternoons prior to starting on the Byetta. Are you testing your blood at all? What happens a couple of hours or so after lunch? Also have you altered your diet at all. I find I'm tired if I over eat or if I have too many carbs. I did have a couple of bad weeks early on, round about weeks 5 -7. It was just after I had the higher dose. I had sickness, tiredness etc big time. It did pass but I also did a lot of tinkering with my diet and cut out even more carbs and got portion sizes right down. I didn't get much in the way of nausea for the first couple of weeks although i did feel very full after eating.

Re: Byetta - some advice please

You don't say what your Bg levels were 2 hrs after your meal ? That might explain why you feel sleepy if they were high. I've been on Byetta for 18 mths and never feel sleepy during the day - quite the opposite !

As for the Byetta there is an extensive thread in 'Diabetes Medication and Drugs' entitled 'BYETTA'.
There is a lot of information there and may answer some of your questions. I will merge your post there at some point later on.

Re: Byetta / Victoza

I was on Humulin s & Humulin i, I Became allergic to Humulin And was put on Nova For 3 Days. that was enough to Cause Swelling and Redness, So my doctor put me on Byetta, just waiting to see Now if I grow 2 Heads now.

But to be Fair No Problems Yet, I have only beemn on Byetta for 2 Days, Time will Tell

Re: Byetta - some advice please

Hi
I started Byetta about 3months ago. Had a bit of sickness to start but now not at all.
I have lost 5 kilos without trying but my B/G levals are good before breakfast av. 6. but the evening readings are very variable sometimes as high as 13. I'm 74 male and diagnosed with type 2 about 20 years ago.I also take Metformin 850 three times a day (sometimes I forget the miday one)
My first bash on the forum. Good luck out there. Advice would be welcome.

Re: Byetta - some advice please

Hi bleinham
Welcome to the Forum. Glad to hear you are starting to do well on the Byetta.

Missing out the metformin may be contributing to the higher evening levels, so best to remember to take it. It also makes me wonder what food you are eating if the levels are reaching 13 mmol/l at times. Diet can have a great effect on your Bg levels - too much and too little are not a good idea for a Diabetic.

As the two posts here are now squarely into Byetta territory I shall be merging them later today with the existing BYETTA topic I mentioned earlier on.

Re: Byetta - some advice please

Hi there, I'm wondering if your high evening levels have anything to do with sometimes missing your metformin? It is important to take everything you are prescribed regularly. Is your metformin the slow release kind? Mine is and means in theory I could just take my 2 tablets once a day. I prefer to have them twice but even twice means I'm not so likely to forget them. I think I would have problems remembering three times. Maybe you could discuss this with your health team.
Have you changed your diet since starting the Byetta? I know we are all different but I would be wanting lower levels later on in the day. I would not be happy with anything in double figures. Although I am sure the Byetta has helped get my levels down, I am also certain that reducing the anount of carbs I eat has contributed. I was hooked on high carb foods but having less of an appetite has really helped and I eat much less now.

Re: Byetta - some advice please

I started taking Byetta during the first week of September. I've lost almost 4st in weight.
My sugar levels have gone from 9-13 and above to between 4 & 7
The docs have stopped the gliclazide altogether and reduced the metformin tablets I take from
6-4 daily. I do have some hypos as my appetite has dropped considerably.
I'm hoping to drop at least another 5 or 6 st in weight over the next year or so

That is incredible - 4st since september. What have you been doing?

My update is that I have lost 30lbs since the middle on July. I went on holiday to Florida in september and although I didnt put any weight on and lost 7lbs in the 2 weeks after I returned, I have slightly lost my way for the past 4 weeks and been over indulging. I have, however, given myself a severe talking to and reminded myself how grateful I was to be prescribed this 'magic bullet' and I think that I have finally managed to find my way back to healthier eating.

When I first went to the consultant to be prescribed I used to drink a couple of bottles of cider each night, just to take the edge off the day. He said to me 'what would happen if you stopped drinking cider?' I replied 'nothing'. I now try to apply that reasoning when I feel too tempted, except now the answer is 'I get to be buried with my feet on'

Good wishes to you all and continued success

Been doing nothing except eating a lot less. I've even cut down on fizzy drinks such as pepsi max.
I havn't taken beer or spirits of any kind for over 20 years, and I stopped smoking my pipe about 12 years ago as well. I treat myself to a small bar of chocolate every Sunday, but that's all the sweet stuff I have. I don't even exercise much as I have arthritis in my knees making walking difficult.

Good for you. Well done.