BYETTA

[cugila]

Re: Anyone use Byetta?

Hi Nicola.

First of all I have moved your post to the very large Byetta thread we have here. Take a look at the previous posts, you may find some helpful advice there ?

Answer to your questions.

1. This is an individual thing. You will just have to try different things and see what works for YOU.
I never had any problem and can take Byetta just before a meal or even up to an hour before food.

2. Walking may help but again it is an individual thing. Probably takes your mind of the nausea ?

3. Again, this is an individual thing. Some people like me never had it, others have had it for a couple of weeks and it has stopped. Then again there are others who cannot tolerate the drug and have had to come off it ? There are several remedies that people have used successfully involving Ginger in some form or another ?

Ken.

 

[Jude]

Re: Anyone use Byetta?

Hello Nicola

I am one of the few who has suffered long term with the side effects of Byetta - have spent 12 weeks on the 5 pen and am just into my 4th week on the 10 pen. I was not sick but have had horrendous nausea and feeling unwell. I took advice from this thread and before breakfast injected and ate immediately - I have now spread that to 15/20 minutes as at last my body is settling down. Interestingly the evening dose does not appear to affect me - generally I am "rubbish" until after lunch!!
To help with the nausea I take a ginger capsule before I eat - in the beginning I drank ginger & lemon tea and some people have ginger biscuits - trouble is with the biscuit I eat the pack!! so that is why I settled on the ginger capsule.
It has been a long struggle but am hoping that I have at last turned the corner and my DSN has said I can have 6 months to see how everything goes - my next hospital appointment is 11th September. I have been diagnosed 4 years and only sent to the hospital in May because at that time I was still taking Lantus (background insulin) alongside the Byetta.
Hope this helps. Jude

 

[nconsta1]

Re: Anyone use Byetta?

Thanks all lots to go at there. I really want to keep going with it my consultant really rates it. I have become insulin resistant which is why I was transferred. I am a bit of sicky person anyway thrown up throughout the whole of my preganancies. My issue is worse in the evening so I will try and inject and eat straight away see if that helps.

 

[Dennis]

Re: Anyone use Byetta?

Hi Nicola,

I was given some "unofficial" advice by the Byetta helpdesk people (i.e. not advice that they publish in the leaflets or their website) that while your body is acclimatising to Byetta in the first week or two, the longer the gap between injecting and eating then the greater the chances of nausea. The shorter the gap then the less chance of feeling sick. I have passed this on to many people and it seems to have helped for most.

There is a common misconception that the the gap between injecting and eating changes how effective the drug is. This is completely untrue. It works exactly the same no matter whether you inject one minute before eating or one hour before!

 

[Jude]

Re: Anyone use Byetta?

Hi Dennis

That information is very interesting (didnt realise that it was the Byetta help desk that gave you this info) - my diabetes nurse told me that the Byetta will not work unless it is taken at least 20mins before food!! As you know I have struggled with severe nausea and I took on board what you said about eating as soon as I inject. I am leaving a bigger gap now and generally I am improving at last but mornings are always my worst - I never suffer after the evening dose and quite often I take that 20-30 mins before dinner.
Seriously, here we are trying to manage a chronic condition and so much of the professional advice is inaccurate. My GP practice nurse sent me to the diabetes nurses last november because she felt they were more clued up etc. - have already told practice nurse that she has given me much better support than the diabetes nurse - very sad isnt it? :roll: Jude

 

[Dennis]

Re: Anyone use Byetta?

Hi Jude,

You're right that there is a huge amount of mis-information out there, and being given to patients by professionals who ought to know better. But in fairness to the HCPs I think that probably Eli Lilly could do a lot more to educate healthcare professional in the do's and dont's of Byetta. They could also add information that they have gathered over the years from patient experiences to their leaflets instead of keeping them a secret unless you ask.

One of the best ones more than a year ago now was a woman who complained to the diabetes specialist nurse about Byetta making her sick, only to be told "well it's supposed to do that- making you sick is how it makes you lose weight"!!! Sometimes I despair!

 

[Keefyboy]

Re: Anyone use Byetta?

Hi All

I've been on the spit for two weeks now and feel fine. I have stuck to the suggested 1 hour before food regime and I have no nausea now. Constant burping is my only "pleasant" side effect. BS is hovering around 8 and 9 at the moment so whilst not ideal, at least it is reasonable. I go back next Tuesday to be assessed (although the hospital did phone yesterday to ask how things are going) when I believe that they will increase the Byetta to 10 and try to reduce one or both of the insulins.

I haven't yet had the courage to jump on the scales. I think that I may wait for the hospital appt. I am certainly less hungry.

Good luck to those that are having unpleasant side effects. I hope these settle quickly.

Best wishes.

Keefy

 

[Dennis]

Re: Anyone use Byetta?

Hi Keefyboy,

It does seem that the guys suffer less from the nausea side effect than the girls do, and nobody (including Eli Lilly) knows why. I have my own theory that it is down to the fact that blokes tend to eat more highly spiced foods than the ladies do. For example, look at the really hot curries, like vindaloo, or an extra-hot Mexican chilli. It seems to be nearly always the blokes who go for it and rarely the ladies. I reckon years of mistreatment of our digestive systems makes them much more tolerant of things like Byetta! :lol:

If I can just clarify one point you made - eating one hour after your injection is NOT the suggested way. If you read the patient instruction leaflet that comes with each pen it confirms one hour is the MAXIMUM time you should leave between injection and eating, not the recommended time. You can inject at any time in the 60 minutes prior to eating and there is absolutely no difference in effectiveness. But for those who are suffering from nausea, then injecting immediately before you eat seems to reduce the nausea.

It sounds like you will probably be moved up to the 10mcg pen if the 5mcg level hasn't made much inroad on your BS levels. But you will need to finish the full 30 days on the lower dose before going up to the higher dose. This is because it takes 30 days for your body to fully acclimatise to Byetta, regardless of whether you get any nausea side-effects.

 

[KatieG]

Re: Anyone use Byetta?

Hi, 1st time ever using chat room or "posting" so sorry if I get it wrong.

I was on Byetta 5 for 4 weeks with only a little nausea in the 1st week, switched to 10 on Friday - since then have had a reaction at injection site - similar to a very itchy bite, white centre spreading red around the centre.

I spoke to the diabetic nurse today, who investigated with Eli Lilly. Reply was it was an unknown reaction, and they've put me straight back onto the lower dose in case of anaphalatic shock.

Has anyone else had this reaction, I only phoned the nurse to see what cream I should use!

Katie

 

[Jude]

Re: Anyone use Byetta?

hi Dennis

I notice in your reply to Keefy that you say that the body takes 30 days to acclimatise to the Byetta regardless of side effects - does that mean that blood sugars take that long to begin to lower? If so would that apply when going onto the 10 pen? I stopped the Lantus totally when I went on to the 10 pen (my own decision - no instructions from diabetes team!). I am getting better numbers from lunch time onwards but the morning is still a problem. Also, the "liver dump" problem - is it possible for this to happen in the morning after breakfast? My numbers start to decrease at 1hr, 2hr, 3hr but then by the time I have my lunch (usually about4-5 hours after breakfast) the numbers are back up again. :roll: I really cant work it out!

Jude

 

[Keefyboy]

Re: Anyone use Byetta?

Hi Dennis

Many thanks for the clarification as it is sometimes inconvenient to wait a whole hour - I recently went to a wedding and there was a BBQ the night before. It is always difficult to gauge when food will be ready in such (pretty rare I accept) circumstances. I was told that it would be best to wait for an hour but now I know that I can relax matters.

It is strange that men and women react differently in general. Your theory may well have some merit!

In truth, I have learned more from these pages than I did at the hospital.

I note that I need to finish the 30 days on the 5 dose first.

Best wishes.

Keith

 

[Dennis]

Re: Anyone use Byetta?

hi Dennis

I notice in your reply to Keefy that you say that the body takes 30 days to acclimatise to the Byetta regardless of side effects - does that mean that blood sugars take that long to begin to lower? If so would that apply when going onto the 10 pen?

Hi Jude,

The way the Lilly helpdesk explained it to me was that exenatide is not a natural substance. Although it is derived from the saliva of the American gila monster, that in itself is alien to the human body. Because of this the body initially goes into reject mode and tries to get rid of this "alien" substance. Lilly reckon that it takes around 30 days to become fully acclimatised to the lower dose, and can take a similar time to acclimatise to the higher dose. The problem with this acclimatisation period is that, even if you are lucky and don't experience the nausea, if you were to move up to the higher dose too soon then it just makes the body's attempted rejection (and the nausea) more intense.

From what I have seen in myself and many others, the weight loss kicks in pretty well at the 5mcg level, but the BG lowering is quite small at that level. On 10mcg the weight loss doesn't seem to intensify (just carries on at the same rate as it was on the lower dose) but there is a much more marked reduction on BG. I don't think the acclimatisation period comes into weight or BG reduction because many report that both started within a week of starting the lower dose.

Your rising blood sugars towards lunch do sound like possibly a liver dump problem. If your BS has dropped significantly at any time of the day then the liver tries to "help out" by creating glucose. It's only when you eat something that the pancreas sends the liver a message to stop generating glucose.

 

[SUSIEP]

Re: Anyone use Byetta?

Hi every one - guess this is a message with a warning really....

I would hate what happened to me on Tuesday to happen to any one else.
On Tuesday morning got out of bed went into the shower - my normal routine!!!! can I just add here that my blood sugars prior to the shower were 7.1
Whilst in the shower I was aware that i started to go light headed - the next thing I remember is coming around in a most peculiar position on the floor of the shower - basically I was stuck with the way my body had gone down - I had great difficulty in trying to manouver myself to try and get out of the shower as my foot had gone under my one leg and my toes were trapped against the side of the shower tray (very big ouch)
Some how I managed to gather myself together and got outof the shower and contacted my husband who had gone to work (yes I was alone in the house when this happened)
Trying to cut a long story short - yesterday (day after the faint) my foot and ankle just ballooned so went up to the local A&E.
Must admit after sitting on one of there trolleys for hours I was majorly hurting ( I had also hit my head and my coxycx on the way down.
Well the X ray showed I had broken a toe and chipped a bone in my ankle - so am now sporting a rather fancy pair of crutches - but more to the point.
Because I had passed out they checked my heart - all ok then they checked my blood pressure, they did my BP lying down - a very respectable 114/60 - THEN they did my BP standing up - was asked, do you feel ok - yes says I - When I looked around at my readin it had DROPPED to a very low 90/51 - TOO LOW.
We need to admit you they said - no said I - I think I know what has caused this and have mentioned it to my diabetic team!!!!

Can we take into consideration here that i have now lost just over 7 stone - 3 1/2 since on byetta - a lot of weight.
When I was at my heaviest I was put on both diuretics and blood pressure tablets - even though I had never had a problem .... but like the good patient that I am religiously took my medication.
I had mentioned my light headiness to my team but was told to carry on as usual - that was until today.
I have contacted the surgery to be told that i most probably dont need the amount of medication that I am on mostly due to the weight loss - so until Monday I have been told to knock out the diuretic then they will be reviewing my blood pressure therapy - and of course in the mean time I am now having to have my lying andstanding blood pressure monitored carefully - good game what!!!!

Please - I do not want to be a scaremonger - but just sometimes I really do think that we know our own bodies better than the proffessionals do (and I am one of those proffessionals just incase you are wondering) I really would hate anyone going through anything like this - so I think - body beware and any inkling of particually in my case light headiness - CHECK IT OUT.

Take care

Sue

 

[pigeonnier]

Re: Anyone use Byetta?

Maybe my slant is slightly different as I live in France and obviously benefit from a very efficient and caring health service. Moved here 5 years ago.

Type 2, diagnosed 10 years ago in UK. Never referred to a diabetic clinic or nurse in UK, just GP managed. Diet & Metformin.

Different here, GP consultation monthly, weekly domiciliary nurse visits to monitor control, annual appointment with endocrinologist and reassessment etc if needed and quarterly blood tests. Last appointment with endocrinologist she advised a new test meter, demonstrated five and allowed me to choose, decided on an Accu-Chek Performa for ease of use and the six needel cartridge system. Also put insulin back onto my regime in conjunction with Byetta.

Byetta, first month at 5 units, insulin withdrawn, suffered badly for the first two weeks with, indigestion and nausea. Second month dose increased to 10 units, same digestive upsets for three weeks. Now no problems after six months, bonus is that I'm losing one kg per month. Downside is that because BG levels rose considerably I'm now back to using insulin as well at 44 units per evening.

Just before the Byetta my GP changed Metfromin for Stagid and all stomach digestive disirders ceased within a few days; Unsusre if Stagid is available UK but it is brilliant!

Also required with Byetta to take BG 4 times daily. No problems with a limit on test strips, just prescribed as required.

Byetta better? Yes!

 

[peecee]

Re: Anyone use Byetta?

Hi all, I've been diagnosed type 2 for the past 7 years but was probably diabetic way before then and only got picked up when i changed doctors. I've been recently put on Byetta (5th week) and have only suffered mild nausea, i found a couple of cream crackers mid morning and afternoon helped to reduce my nausea. Weight loss has been good at 17lbs for the first month and since being on the 10ug dose have noticed a loss of appetite so looking forward to a similar or greater loss for month 2, due for my first Wish i'd had this prescribed years ago

 

[sussex]

Re: Anyone use Byetta?

Hi, I have been using Byetta for several months. I lost 3 stone in weight and feel much better. My BS is good an the Diabetes team are well pleased. I only felt a little nauseous for a few days it was no big deal, I think Byetta is wonderful and I
am grateful to the people on here who steered me in the right direction.

In the Balance magazine which arrived this week, a new treatment for type 2 has been launched by Noro Nordisk. Its called Liraglutide aka Victoza. It sounds similar to Byetta in so far as it helps weight loss by making you feel full and delaying the rate at which your stomach empties.

 

[Dennis]

Re: Anyone use Byetta?

Hi Sussex,

Liraglutide (Victoza) is very new having only been approved in Europe in April this year. In fact it isn't yet approved in the US. Victoza is a once-a-day injection, but are you aware that the Byetta people are hoping to release their once-a-week version later this year?

 

[cugila]

Re: Anyone use Byetta?

Hi Sussex.

Further to what Dennis said about VICTOZA, here is a link to the Topic on this forum.
viewtopic.php?f=1&t=9281#p93658

 

[sussex]

Re: Anyone use Byetta?

Thank you Dennis and Cugila. I read through the correspondence re Victoza, I am very happy on Byetta and will watch with interest the developements.
The news re a possible once a day or a weekly injection using Byetta would suit me. Keep up the good work, and support given to so many on this forum. It's sad to see so many left floundering with so little help and support from the medical staff. I am lucky to have a great Diabetes team at my surgery.

 

[mandapanda2601]

Re: Anyone use Byetta?

Hi Dennis

I have been using Byetta since Nov 08 i started off on 5mg then went up to 10mg. My blood sugar levels were high and i felt awful, i couldnt lose weight either and was injecting 5 times a day.

I've since lost 2st 3lb, yes sometimes i feel sick and dont want eat but i still try a bit, i'm also following a slimming world plan to try get my weight down.

My last HBA1c was 6.. not bad for a girl who started at 11+!!!

I feel so much better, breakfast BG readings vary between 5.6 to 7.00 depending on what i have had the night before.

My SDN was wonderful when i went onto Byetta...

I hope taht it works out for you

Amanda