BYETTA

Re: Anyone use Byetta?

Hi Fiona,
I guess I've been quite fortunate in that I have only ever had one bad pen in 19 months on Byetta. Although the plunger seemed to be working it wasn't delivering any Byetta. I phoned the Eli Lilly help desk for advice and they took the details of the chemist I got it from, phoned them and arranged for the chemist to issue a replacement, collect the bad pen and send it to them for tests. At that time I was getting it on private prescriptions at around £100 per pen, so I was quite relieved that Lilly issued the replacement free.

Enjoy the chocolate - after all it is for medicinal purposes!

Re: Anyone use Byetta?

Hi Rose,
A reduction in blood sugar generally comes alongside a reduction in carbohydrates and it is very common for this to result in cravings for sweet things, even some things that you did not previously eat, like chocolate. I remember a comment not long ago saying that this person was suddenly getting cravings for chocolate when he had never eaten much of it before.

The reason for this is that sugar, whether eaten directly as sugar or indirectly as another form of carbohydrate, encourages the production of seratonin in the brain. Seratonin is a neurotransmitter that is responsible for calming, relaxing and general wellbeing, and is often referred to as the "feel good" transmitter. The brain becomes accustomed to a regular level of seratonin and when this is reduced, the brain suffers withdrawal symptoms and sends messages demanding that you eat more sweet things. After a while the brain becomes accustomed to a lower level of seratonin and the cravings stop.

For those of us who have switched to a low or just a reduced carb diet, or as in the case of Byetta maybe not a deliberate reduction in carbs but simply a reduced food intake, we have probably all experienced this to a greater or lesser degree. Don't worry, its just your body adjusting itself to living with less seratonin and it does pass.

Re: Anyone use Byetta?

Hi Goji,
Although Byetta is technically not approved for use with insulin, there is an increasing number of people who are being put on it by endocrinologists and diabetologists. Unfortunately not by GPs because they generally stick to the NICE guidelines that say not approved with insulin. Of course he could come off the insulin in order to take Byetta - he would have to reduce his insulin while on Byetta in any case. But it sounds like his GP is of the old school - "only one way to treat diabetes and that's with insulin and as many carbs as you can eat".

As you have already tried to persuade him to consider low carb, you are obviously well aware yourself of the difference this makes. His reliance on his GP's advice is literally killing him. I am afraid that if he doesn't change his diet then he is heading rapidly for an early grave, aided and abetted by his GP. Is there any chance you could persuade him to join this forum, or at least to have a look at it? Maybe someone outside of the family, like us, might be able to educate him as to what high carbs are doing to him.

Re: Anyone use Byetta?

Hi Liz,
Is your new pen the same dose as the previous pen? If you have changed dose from 5mcg to 10mcg then you will experience a second bout of nausea until your body becomes accustomed to the higher dose.

If you haven't changed dose then about all I can suggest to reduce the nausea is
- inject immediately before you eat - the longer the gap between injection and eating then the worse the nausea
- if you also take metformin then take these with some water in the middle of your food, not before or after the meal
- don't eat anything greasy or spicy
- try having a very diluted ginger drink with your meal (e.g. Bottlegreen's ginger and lemongrass).

The only other thing that does often work is to switch back to the lower 5mcg dose for a month, then go back to the 10mcg. The body seems to be better able to accept the 10mcg dose the second time around, but nobody knows why!

However, if your dose hasn't changed, and you weren't getting nausea before, then you shouldn't suddenly start getting it now. That could indicate that there is a problem with the dose level in your pen so I would report it to your doctor and see if you can get a prescription for a replacement pen.

Re: Anyone use Byetta?

Hi Janet,
I'm afraid your nurse hasn't read the instructions properly. One hour is the absolute maximum time you can leave between injection and eating, not the amount of time that you must wait for. As I covered in my response to Liz, the longer you leave it before you eat then the greater is the chance (and severity) of nausea. Unfortunately your nurse is not the only one who has misunderstood (or not read) the manufacturer's instructions. We had a member last year who had been told that the medicine is supposed to make you feel sick, that's how it works - that way you don't eat so much so it makes you lose weight!

This is a link to the Eli Lilly instructions for health professionsls.
http://pi.lilly.com/us/byetta-pi.pdf
The section that covers when it should be taken is on page 13. You might want to print the page and show it to your nurse when you next see her.

Re: Anyone use Byetta?

Hello C,
Unfortunately it sounds like you are getting scarring under the skin from the injections, which leads to bruising, and when you inject into the area not only does it hurt like hell but the injection is often ineffective. The problems you are experiencing with your forearms are well away from the injection sites so you need to see your doctor to find out what could be causing this.

The makers recommend that you inject into the stomach, or failing that into the thighs, or (3rd choice) into the upper arms. The problem with the arms is that they have a much smaller area than either of the others so you are constantly re-using the same injection sites. Is there some reason why you can't inject into your stomach, because that is by far the best target area? On your stomach, even if not overly large, you can go for weeks without re-using the same injection site.

You don't mention what your typical diet is, but if you are constantly hungry then it sounds like it could be rather high in starchy carbohydrates and low in fibre and protein. That would account for what is a dangerously high blood sugar level and the hunger pangs. One of the big problems with high carb foods is the "chinese meal" syndrome - an hour after youv'e eaten one you feel hungry again!

If you can give us an idea of what your typical day's meals would comprise, we might be able to give you some pointers to getting your BS back into the safe zone.

Re: Anyone use Byetta?

babbettes said:

i have been on byetta 5 for 3 weeks and going up to 10 at the weekend as im on insulin as well i inject into the top of my leg with a smaller needle it dosent hurt but ive had several bad hypos and lowering my insulin doses.
The specialist put me on Byetta with the insulin to see if my readings will come down and they have im just hoping i dont get any side effects with the 10 as i was fine on the lower dose .
Make sure you leave the injection in for the count of 5 or 6 and have it at least an hour before food .

Click to expand...

Hi Babbettes,
As your specialist will no doubt have already told you, you will need to keep a very careful watch for hypos because Byetta encourages your pancreas to produce insulin, so you should need a lot less injected insulin. If you had no side effects with the 5mcg dose then it is unlikely that you will get them with the 10mcg.

I'm a bit concerned by your comment about injecting "at least an hour before food". The one hour figure is the absolute maximum time, not the least time. Have a look at the patient information in this link (on page 2)
http://pi.lilly.com/us/byetta-ppi.pdf
You will see that the instructions are very clear that you must eat WITHIN 60 minutes of injecting. The reason for this is because when we eat our body's insulin production comes in two phases. When we start to eat the stomach produces substances called incretins that tell the pancreas to start producing insulin. This is first phase insulin production.

Then as we digest the food, and the blood sugar goes up, the pancreas recognises the increase and starts to produce more insulin to deal with it. This is second phase production. Many type-2s don't have the first phase production, so the pancreas is very late in producing insulin in response to food, and often won't produce the appropriate amount. The result is blood sugar levels that just won't come down. This is where Byetta comes in. Byetta contains an incretin that is just like the ones produced by our bodies, and so the injection kicks off first phase production. The first phase production doesn't last very long and If you don't eat within that hour then the first phase production will have stopped and second phase won't be able to deal properly with whatever you eat.

When I was first put on Byetta 17 months ago I wanted to learn all I could about it and how it worked and I had some very long email and phone conversations with Eli Lilly staff both in the UK and their US head office. They were quite surprised that someone should take such an interest and were extremely helpful and encouraging. I learned a great deal from them, including lots of hints and tips that they don't include in the instruction leaflets, and am pleased to now be able to pass on that knowledge to the many new "lizard spit" users in the UK.

However, it does concern me that so many "specialists" are giving their patients information that simply shows that they haven't read either the patient information or, more importantly, the instructions for health professionals on what this drug does and how it should be used.

Just one other point that you may want to bring up with your specialist - if your BS levels are coming down and you are already experiencing hypos on the 5mcg dose then why on earth would you need to have the dose doubled!?! Again, the (apparently unread) instructions to health professionals are that the dose can be increased to 10mcg, but only where the patient needs the higher dose.