Need urgent advice re NICE guidelines on Byetta

Pozzie

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I have just tried to obtain the official stance on continuing prescribing Byetta to patients, but couldnt find it in the NICE website (i may be looking in the wrong place though)

I have had a terrible time with my consultant and diabetic nursing team. I was the first person they ever treated with Byetta, and only managed to get it after a big fight with the consultant. They started me on it very begrudgingly. Ever since, they have put me under a lot of uneccessary pressure by constantly telling me i am only getting it for 6mths unless my blood sugars greatly decrease.
I have been taking it for 4mths now and have managed to lose 2 stone 6lbs!! I am sooo happy about this. My problem is that my blood sugars have been quite erratic. They seem to go lower for a while then spike up and down.
To add to my woes, at my last hopsital appointment, after taking Byetta for 3mths, they gave me the blood test to see if my blood sugar levels had reduced. I cannot get them to tell me the results!!! I have phoned the nurses twice and left messages asking them to let me know. I also bumped into one of them at the hospital last week whilst there with my husband. Once again i asked if they would please give me my results. She said she would find out later in the day and phone me. Hasnt happened yet!! But she inisted i be weighed when she saw me. She was quite shocked to see how much i had lost :D But then went on to warn me that i wasnt getting it anymore if blood sugars werent down. :roll: I am getting very angry and upset because i feel that the fact the Byettta is making me lose so much weight is a good enough reason to keep me on it. I would be devastated if they took it away from me.

Can anyone tell me if i can demand i am kept on it if i am losing weight?
 

cugila

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Hi Pozzie.

This is the guidance that you need : May 2009

1.6.3.2
Only continue GLP-1 mimetic (exenatide) therapy if the person has had a beneficial metabolic response (a reduction of at least 1.0 percentage point in HbA1c and a weight loss of at least 3% of initial body weight at 6 months). [new 2009]
 

Pozzie

Active Member
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28
Thank you for that.
So i guess she was correct :( She said i had to have the reduction in both bloods AND weight not either or.
I dont understand why they are so mean to me!! I have read on here of many people not being taken off it immediately the 6mths is up, so how come i have been threatened with it from the get go?? I feel they have been putting me under so much stress over this. Arent they supposed to be a support to me? I have had lots of sleepless nights worrying about it all. But the most frustrating thing of all is they wont even TELL me if i have a lower blood sugar level or not!!
 

cugila

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Hi Pozzie.

I feel for you. Why not try asking your GP for the results. They should be part of your Medical Records. They should not be withholding your results from you. You need to complain to the Hospital and your Gp about this. You are entitled to see them.