byetta

[siddywest]

Hello one and all, particularly Dennis my Byetta expert,

I am seeing my consultant this afternoon and they have finally agreed to let me start on byetta. I am so chuffed, have been taking insulin for the last few weeks which was fine but also having to take so many oral meds it was a pain, also kept having hypos from the repaglinide.

Will let you know how I get on with it. Have taken on board all your tips re avoiding sickness so will see how it goes.

Only query I have is that my nurse told me this morning that we are now required to inform DVLA if we are on Byetta and that this was a recent change, can anyone confirm if they have heard this too.

Take care

Michelle.

 

[Dennis]

Hi Michelle,

Your DN is certainly on the ball - there has been a new development since I contacted DVLA last August, and it could also affect Ian. I wasn't aware of it until you mentioned it but I have just taken this from the DVLA website this morning:

Treatment with Exenatide (Byetta) or Gliptins

Exenatide has recently been licensed as a treatment for use in type 2 diabetes, in combination with metformin and/or with sulphonylureas. Trials published to date show a small but significant increased risk of hypoglycaemia when exenatide is used in conjunction with a sulphonylurea. It would appear that when the gliptins (DPP4 inhibitors) are used with sulphonylureas, the hypoglycaemia risk is similarly raised.

The increased risk of hypoglycaemia from exenatide or gliptins when used in combination with sulphonylureas is such that these are felt to be a potentially high risk treatment for drivers holding Group 2 (LGV or PCV) licences and that individual assessment will be required. Their use currently carries no specific driving restrictions for Group 1 (car or motorcycle) licences.

So, if you have a Group 1 licence then they don't need to know. If you have a Group 2 licence then you need to inform them, but it sounds like you will be ok if you are not taking a sulphonylurea.

 

[creamslice]

Hi all
A health care professional friend of mine heard that a a London teaching hospital was looking for guinea pigs for an Exenatide trial (a bit late?) and I wondered if anyone had heard anything about it?

As a Type II fatty on Metformin who Gyms out 3 times+ a week, without much to show for it except exhaustion, I asked my GPs Diabetic nurse if I could go on it, pretty please, & she promtly washed her hands of me , referring me to the local hospital, saying, "we dont do it here". :roll:

They really, really don't want us to have it, do they? :evil: Anybody else had a similar experience or a solution?

Creamslice

 

[siddywest]

Hi Creamslice,

I really had to fight to get it aswell. My BMI is 29 and they argued that because it was one point away from being obese that they wouldn't give it to me, despite it sounding absolutely perfect for my symptoms.

Only a consultant can prescribe Byetta which is why they probably said they didn't do it there. I would continue to read up on it via the byetta website and also take advice from Dennis. This is what I did and went in with all the facts and good points. They tried to talk me out of it with the side effect side of things but I kept referring back to this forum and quoted peoples comments and eventually won the day. I am collecting my first prescription for it later today. Will keep you posted as to how I get on with it.

Keep pushing to see the consultant.

Regards Michelle.

 

[sixfoot]

Hi Dennis finally got back on the site. Had major Vista crash that coincided with the site change. My Byetta is going well, the trip to Spain didnt cause any probs took the unset pen in Frio pouch. The strange thing was that the airport werent interested in whether i had sharps or a letter. Am on 10 mcg now no probs. the weight has been static for the last 2 wks but have at last got below 265 lb. All my tests so far have been well down and have been toying with low Gi stuff. Although i wouldnt describe myself as a veggie have found that if i have something tomatish and spoon in few red lentils it does drop the count which opens up a few options. Have been watching the thread on Cinnamon with interest but cant find much about how much to use.
Anyway thanks for all the advice so far dave p

 

[Dennis]

Hi Dave, Nice to see you back with us. At least you had no problems at the airports. I have had some trips where I get grilled about my pen and sharps and other times where the staff are not in the least interested. Worst case was at Heathrow once where security staff refused to believe me or the GP's letter and insisted that I inject myself there and then to prove the liquid in the pen wasn't poison. I explained that I had already had my morning injection just a couple of hours before so can't inject again for at least 6 hours and another injection would put me into a hypoglycemic coma. I eventually persuaded them to get the airport medical team to confirm what I was telling them was correct and finally was able to board OK.

On the cinnamon question, the recommended dose if using the powdered sort is half to one teaspoonfull per day. Not sure about capsule form as I haven't tried them, but just be guided by what it says on the jar.

 

[sixfoot]

Thanks for the info on cinnamon dennis, Is that because it lasts all day in the system or because of some other reaction.

 

[Dennis]

Hi Dave, I believe that at very high doses cinnamon can be toxic (something like 17 teaspoons per day), which is why the recommended dose is one teaspoon.

 

[sixfoot]

Thanks dennis , did a google afterwards cos it never occurred to me to think toxic and came up with a few sites that said pretty much the same thing.
Got my 2nd Byetta review on the 19th, It makes me cringe to read some of the tales of woe about getting hold of this stuff. All i can say is for once it does what it says on the tin and i for one am glad im able to get it.
Was a bit startled by the gliclazide and driving posting as one of the big things for me being a driver was to avoid Insulin like the plague because of the consequences. Oh well i`ll just have to sit it out in the frying pan i suppose until there is a definitive answer.
Dave P

 

[sixfoot]

Dennis , when i had my induction to Byetta meeting it was as part of a group of 10 or so fellow sufferers. Some of them were transfering from Insulin to Byetta.

In the thirst for Knowledge have been googling away and found some "annecdotal" medical research reports that Byetta seems to have a remedial effect on the Beta cells. Found anything similar in your browsings ? Obviously if there is any substance it would be great news

 

[Dennis]

Hi Dave,

I've seen this mentioned somewhere recently as well, and it would be great news if it was true. However, I am very sceptical because repair of the pancreas is not something that the manufacturers (Eli Lily) claim that byetta is capable of doing! I'm not sure where the idea came from, but I would hazard a guess that someone somewhere has mis-read or misunderstood the phrase "Exenatide augments pancreas response". What it means is that byetta encourages beta cells to produce insulin, but I suppose that someone could misinterpret "augment" to mean "repair".

 

[Dennis]

To all my fellow lizard spit users out there, I got some good news on Friday: my latest HBA1C result was 6.7% (first time below 7 since I was diagnosed) and my GP (after a long battle with the PCT) is at last able to give me byetta on prescription!!!

 

[Silvercat]

Well done Dennis. Good news on both counts. You will be rich now lol!!!!

 

[sixfoot]

Good on you silvercat, Always a bonus when someone has good news.

 

[Silvercat]

Hmmm I have good news? Lol.

 

[shabti]

I started on Byetta in Feb this year, I was on Inulin Glargine for 3 years put could not lose weight. I was prescribed it by the consultant at the hospital, there are about 10 other people in that clinic on it. It made me feel sick and I did throw up once, but that has gone off now. Every now and then I feel sick but I'm more bothered by the awful tiredness. I have lost 18lbs and a dress size (yipee) but this seems to have slowed down, will have to 'up' my exercise.

I would like to get a case that fits the pen as I am using my old insulin box which is big and not insulated, can they be purchased from the chemist? I too hit the problem of a drop of blood syphoning back into the cartridge and contacted Lily, they never gave me a replacement though. The Diabetic clinic were suprised that there is no warning on the instructions re this.

 

[Dennis]

Hi Shabti and welcome to the forum. If you need to carry the byetta pen around with you then I would recommend a Frio bag. You can get them by mail order direct from the manufacturer
http://www.friouk.com/

I tend to use my Frio only a few times a year, like on holidays. If I am out for a meal then I just take the pen in my pocket because you can use it at room temperature for up to 7 days in a month. The rest of the time I just keep it in the fridge.

 

[sixfoot]

Shabti, bear in mind that the needle is very very fine and when you press the button it can take a while for the full dose to come out. Therefore when you inject leave the needle in the site and count to 5 ( this should mean the full dose is given) Hope this helps


Dave P

 

[Dennis]

. . . . . . . also remember to keep the pen dispenser button fully depressed until the needle is completely extracted from the injection site. If you release pressure on the button before the needle is out, even slightly, then you can create a partial vacuum which draws blood into the pen chamber.

 

[sixfoot]

Well done Dennis these days im prone to forget something and its usually important