BYETTA

[cugila]

Re: Anyone use Byetta?

Hi Ken
I try and follow a reduced carb diet, I probably have about 150g a day, I know it is not as low as some people but I love my porridge in the morning with some flaked almonds sprinkled on top, usually have a salad lunchtime or maybe a piece of toast with eggs and in the evenings I usually have meat/fish and veggies. Occasionally I will have a small portion of pasta, maybe 1 potato with my evening meal but nothing else.
I do have a sweet tooth and succumb to a couple of squares of chocolate, plus I do lots of exercise each week.
I'm desperate to start losing weight again, I've shifted 5 stone but lately nothing has moved!

Hi fiona.
I think you know in your heart that those Carbs have got to go. My daily carb intake is between 50 - 70gs only. A fraction of your intake. I am sure that would kick start you into losing more weight. The previous loss was fabulous.
I love Porridge, Cerals, Bread, Potato, Rice, Pasta etc but to lose the weight I avoid all of them like the plague now. I have got used to that quite quickly - don't miss them at all. There are lots of alternatives which are just as nice. See you are Gluten free so I suppose that has to be considered as well.

Try reducing the carbs for a couple of weeks and see how you go ? Low Gi food is also a good idea in conjunction with that. I am sure things will move soon. Just try to be strict with yourself at all times. I know it isn't easy. I would die for a Curry and Rice. :?

Hope that helps.
Ken.

 

[sussex]

Re: Anyone use Byetta?

I think this has already been discussed, but I'm unable to find it on the boards. I will be flying to Spain in June and need to know the latest on taking Meds!!
I am on Byetta and will need to have needles in my hand luggage. Do I request a letter from my Gp or Diabetes nurse to explain. :?

 

[cugila]

Re: Anyone use Byetta?

Hi sussex.

Yes. It is best to get a letter from your GP listing all medications and the fact that you need to carry needles and lancets. Some people say, don't bother. Better to be safe than sorry.

Take enough supplies of any medication that you have been prescribed and carry a copy of the prescription with you.
Carry any medical letters about your health condition to help doctors and nurses abroad if you are taken ill.

Ken

 

[AliB]

Re: Anyone use Byetta?

I have to chip in here. I was given Byetta just under two years ago. My Diabetic 'Specialist' suggested it to me as an alternative to the insulin I was on and mentioned that weight loss is a side effect. I said I would go away and do some research and come back to him. His comment was that on my return I would 'probably know more about it' than him!

I did some research - what was available at the time - and although it mentioned that some people get stomach and digestive issues - something I have had most of my life anyway - I decided to go with his suggestion as I thought that I could be no worse off. Ha Ha.

I was only on it three months. Although I did lose some weight, it did absolutely nothing for the blood sugar control and I had horrendous problems with my digestion. Even after he took me off it and put me back on insulin 'because the sacrifice isn't worth it', I did not improve and the pain every time I ate just got worse and worse until I ended up in Hospital three months later with a collapsed digestive system and continuous running diarrhoea.

I have spent the last 16 months trying to claw it back. I had to drop gluten and dairy which helped somewhat (although, like every type of test I have since had, the test for Coeliac Disease came back negative) and have been following the Specific Carbohydrate Diet which has helped the most, but it still isn't right. Ironically, before I started the Byetta I had been eating lots of vegetables and salads with some protein and had been feeling pretty good but the Byetta blew it all out of the water.

I have since learnt that because I was already on insulin I should never have been given the Byetta in the first place. Whilst it can work for those who are producing enough of their own insulin, it will not work for those who aren't. Why on earth did the 'Specialist' not know that???

I wish I had never heard of the stuff.

I did lose weight - about 20lbs whilst on it, but I have lost another 23lbs over the last 16 months due to the 'outfall' from the effects of the **** drug and through my own efforts.

Will my digestion ever recover? Who knows?

I had little enough faith in Doctors before all that (their negligence killed both my parents) but I will now never trust a Doctor again.

PS. The last time I saw him I had hardly sat down when he was shoving Statins at me. I said 'I won't take them'. 'Why?' says he. 'Because I think they are rubbish and unnecessary', says I. 'Well, you ought to', says he, 'diabetics should keep their cholesterol low'. 'What is my level', I ask? ''3.8', comes the reply. 3.8??!!!!! For crying out loud - if it was any lower I'd be on the flippin' floor!

At that point I, in so many words, told him he could stuff his Diabetic Clinic and I would be treated from my local surgery. Ironically, a few weeks later the Daily Mail ran a two-page spread on the dangers of giving Statins out unnecessarily and that cholesterol that is too low (they cited 4 as the benchmark) can actually be as dangerous as having it too high. I hope he read it.

In any case, from all the research I have since been doing it seems that the body only produces lots of cholesterol to plug damage in arteries, so the trick to lowering cholesterol is to remove foods that cause damage from the diet, like dairy, sugar and high-carbs (especially gluten, which is evil in its current form).

 

[cugila]

Re: Anyone use Byetta?

Hi Alib.

Sorry to hear you didn't have a good experience with the Byetta.

Most patients around the world on it have done really well. It is considered a 'Gold Star' treatment in many Countries.
There are a few exceptions of course. Like with any other medications each individual reacts differently to a specific drug. We are all different.

Hope your present regime is helping you to get better control and that things improve in the future.

Ken.

 

[Dennis]

Re: Anyone use Byetta?

Hi Ali,

As Ken said, I was sorry to hear that the Byetta didn't work out for you. I have come across many people who take a combination of Byetta and insulin, but this is not a combination that the manufacturers recommend, not because they are aware of any problems but simply because they have never tested the combination, so they just don't know what risks there might be. This is why Byetta is not licenced in the UK for use with insulin. Anyone who does try the combination should be warned that they are in uncharted territory.

Incidentally the only reason your doc wants you on simvastatin is because he gets paid a bonus for every patient he signs up to it! Never mind what the patient needs, just think of the profits!

 

[AliB]

Re: Anyone use Byetta?

Yeah, and he probably got a bonus for dishing me the Byetta as well. I hate Doctors, and I hate drugs.

I have been following the Specific Carbohydrate Diet with some success and currently I am working through a liver cleansing diet. It has triggered off some weird stuff, and I haven't been able to eat too much over the last week or two. But yesterday and today I have been feeling better and have eaten more but interestingly I haven't needed to take any insulin or Metformin as my BS hasn't risen enough for me to need it, so I am going to monitor this with interest.

I do generally eat low-carb anyway, but normally even a little carb would push my BS up.

Apparently a sluggish and congested liver can contribute to typical diabetic stuff like weight gain, and particularly around the middle, plus other symptoms. Stands to reason in a way - as the liver is the primary organ for detox then if it can't do it's job properly the build-up of toxins in the body has to impact in one way or another. It was my hair falling out that was an indicator that not all was well with my liver, but it made me realise that the upper back ache and 'weary' stomach I have had for years may well have been due to liver congestion.

My liver function tests have come back normal (and always do) but unfortunately they don't test for congestion or toxins.

 

[jennyanydots]

Re: Anyone use Byetta?

Hi. I'm new here and looking for answers to really silly Byetta questions! Please can someone tell me whether Byetta loses its efficacy after 30 days? Do I need to start a new pen even if the old one is not finished? Next question - what do I do with the sharps box when it is full? What would happen if I injected the Byetta and then my meal was not available e.g. when out for dinner and you think it's about 30 minutes till they will serve the meal but it turns out it's not forthcoming for two hours! My nurse said never to inject after a meal - why? You may wonder why I didn't ask her all these things but my mind goes blank when I see a medical professional! Thanks. :?

 

[micky1uk]

Re: Anyone use Byetta?

Hi all going away a wk tomorrow to alcudia a couple of questions iv seen them on here but im under the hospital for my diabetes & been given a standard letter.the exact wording as follows.
to whom it may concern the above patient has type 2 diabetes & is currently on betta injections twice daily & carries equipment for his/her byetta administration should you require any further imformation please do not hesitate to contact me yours sincerely......Then signed by two consultant physicians one consultant & one locum consultant...now these are all photo stats (copys)including the signitures with just my hospital sticker on it ... is this going to be enough ?
And my second question is iv been recomended to take B1 capsuls before i go to keep the mossys away are they ok to take one aday with byetta? regards mick

 

[cugila]

Re: Anyone use Byetta?

Hi Micky.

Having checked the BNF (Prescribing Information) there is nothing listed about Vit B1 supplements.

It is possible that not every Byetta drug interaction was listed. Therefore, you should talk with your Pharmacist or GP about the specific drug interactions that may apply to your situation.

As regards your trip I presume you are flying ? As with most documents which may need to be produced whilst travelling photocopies are not normally accepted. You will have to check with the
Airline concerned as each carrier has their own rules regarding this. A photocopy MAY be acceptable but only they will know.

Ken.

Enjoy the holiday. 8)

 

[cugila]

Re: Anyone use Byetta?

Hi jennyanydots.
Welcome.
You said:
Hi. I'm new here and looking for answers to really silly Byetta questions! Please can someone tell me whether Byetta loses its efficacy after 30 days?

Yes it does. Never use a pen after the 30 day period expires.

Do I need to start a new pen even if the old one is not finished?

Yes. Dispose of the old pen carefully.

Next question - what do I do with the sharps box when it is full?

Depends where you obtained it ? Local Councils have a duty to provide Clinical Waste Disposal Services. Contact them for advice. There may be a small charge for this service. In my area it is free.

What would happen if I injected the Byetta and then my meal was not available e.g. when out for dinner and you think it's about 30 minutes till they will serve the meal but it turns out it's not forthcoming for two hours!

I would imagine that you would be pretty angry ! The best thing to do if this ever happens is explain that you need something to eat within this time frame, even a small amount of food, such as bread rolls is sufficient to keep the Byetta working. Better if there is more though.

My nurse said never to inject after a meal - why? You may wonder why I didn't ask her all these things but my mind goes blank when I see a medical professional!

The reasons why you should not take Byetta after your meal.

There are two possible, and opposite, effects:

Higher post-meal glucose levels: The blood glucose after your meal might be higher because you would have missed the desired effect from BYETTA – meaning that: When you inject BYETTA at the appropriate time, BYETTA normally tells your pancreas to make more insulin to handle your meal; it suppresses the liver from releasing too much glucose after the meal; it slows food digestion to lower your post-meal glucose.

Possible mild hypoglycemia: In clinical studies, when BYETTA was taken after the meal, there was a somewhat higher incidence of mild hypoglycemia (low blood glucose) in some people who were also taking a secretagogue (i.e. a pill that stimulates your pancreas to produce more insulin).

Hope that helps.

Ken.

 

[Dennis]

Re: Anyone use Byetta?

Hi all going away a wk tomorrow to alcudia a couple of questions iv seen them on here but im under the hospital for my diabetes & been given a standard letter.the exact wording as follows.
to whom it may concern the above patient has type 2 diabetes & is currently on betta injections twice daily & carries equipment for his/her byetta administration should you require any further imformation please do not hesitate to contact me yours sincerely......Then signed by two consultant physicians one consultant & one locum consultant...now these are all photo stats (copys)including the signitures with just my hospital sticker on it ... is this going to be enough ?

Hi Micky,

Further to Ken's answer, you will probably get away with a photocopy provided the copy itself has been stamped by the hospital, not a photocopy of the hospital stamp (if that makes sense). To check, it is the airport managing authority (usually BAA in the UK) that you need to check with rather than the actual airline. It is the airport management that run the security checks, not airline staff.

In dozens of trips abroad I have only been questioned about my Byetta injection kit on two occasions, once in Boston (where they were satisfied with the GP's letter that I always carry) and once at Gatwick where an extremely officious woman demanded that I inject myself there and then to prove I wasn't carrying poison. On that occasion I demanded to see the Gatwick resident doctor who was able to explain to the security official that patients have to inject at specific times and not just when she wants them to.

 

[Trulee]

Re: Anyone use Byetta?

Hi everyone - my first post having just found you through Google.

Does anyone on this thread live in Buckinghamshire and if so, did you have trouble getting Byetta prescribed?

I have been diabetic for 9 years, first on diet alone, now on an oral combination of Avandamet and Gliclazide, but since a heart attack at Xmas and the cardiac doctors 'playing around' with all my meds, my control has got steadily worse.

My consultant feels that Byetta would be a good 'next step' in treatment but says his hands are tied as, although NICE have licenced it Bucks PCT wont allow GP's and consultants to prescribe it.

Am at the end of my tether knowing what to try next at the minute - any suggestions would be gratefully received.

many thanks
Trulee

 

[cugila]

Re: Anyone use Byetta?

Hi Trulee.
Welcome.

I sympathise with your problem. Unfortunately this is all down to costs.
The PCT have decided to place a 'blanket ban' on the prescribing of Byetta in your area. Totally wrong in my opinion, but that counts for little when confronted by the 'bean counters.'
I am not totally sure if this is actualy allowed under the rules ? You can bet your life somebody has made sure there is a loophole.

You can complain to your GP Practice, the Local PCT and write a letter to your local MP.

Ken.

 

[Trulee]

Re: Anyone use Byetta?

thanks for that Ken - am just so frustrated at the minute by it.

Usually I am a fighter, but the heart attack has taken a lot of my 'fight' and instead I find myself sitting here in tears about it which will do no-one any good.

I dont suppose you know of anywhere I might find a 'standard letter' format that I could adapt to write to PCT and GP do you?

 

[Dennis]

Re: Anyone use Byetta?

Hi Trulee,

I think the situation you have described is apalling, but I doubt whether any amount of complaining will change the PCT's decision. However, what I would recommend is that you write a letter of complaint about the PCT to the Secretary of State for Health, The Rt Hon Alan Johnson MP. You could explain that the PCT, who are not medically qualified to do so, are overruling the judgement of both your GP and consultant by refusing to allow prescription of medication that is approved and widely prescribed in the UK, and that your medical support team believe is right for you.

 

[cugila]

Re: Anyone use Byetta?

Hi Trulee.
You asked about Complaint Letters.
Here area few guidelines.

How to write a complaint letter
Keep in mind that most errors are unintentional
and realise that most businesses and organisations want to address and clear up complaints quickly in order to have satisfied customers or members.

Be brief
Keep your complaint letter to one page, and write short paragraphs rather than long ones

Be honest and straightforward
Include sufficient detail to back up your claim and to show that you have thoroughly researched the subject. However, omit irrelevant details.

Maintain a firm but respectful tone, and avoid aggressive, accusing language
Keep your complaint letter concise and professional

Send only photocopies of receipts and other documents, and retain all originals
Keep a copy of the complaint letter for your records

Get other signatures
In many cases, you can increase the effectiveness of your letter by getting several others to sign it with you. This is particularly the case when trying to influence or change legislation, denouncing material from the media, and so forth.

Do not threaten!
If a company has repeatedly given you bad service and refuses to correct the situation and you feel that your only recourse is to pursue legal action, voice your feelings in a tactful but firm way. However, don't threaten legal action unless you are willing to follow through with it.

Avoid making generalisations
about the company or organisation if your complaint letter focuses on a single individual.

Use tact, and be direct, but respectful
If you need to make a complaint to or about people that you will still have contact with on a regular basis, your complaint needs to accomplish its purpose without destroying the relationship.

Include your contact information
Include your name, address, phone number, and e-mail address, if desired, so that the person(s) can reach you to discuss any questions or concerns.

If a first letter does not bring action, assume a stronger but still respectful tone in the next one. If two or three letters do not resolve the problem, send one to the president or CEO of the company or entity. In each case, be firm but polite.

Complaint letters can be a very effective way of making your voice heard


Hope that helps.
Ken.

 

[Trulee]

Re: Anyone use Byetta?

thank you so much guys for the suggestions - had a long conversation with a friend last night who is a solicitor and believes that I can attack them on the grounds that they are abusing the European Convention on Human Rights by witholding a drug that could improve my quality of life purely on economic and not clinical reasons, especially when it is available in the majority of PCT's in the country now.

Hopefully we will draft something to go to the PCT this weekend.

 

[cugila]

Re: Anyone use Byetta?

That's very interesting Trulee.

Please let us know how you get on. This is something that may be of interest to others in similar situations ?

 

[jennyanydots]

Re: Anyone use Byetta?

Ken - Cugila
Thank you very much for your brilliant answers.
Jenny