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byetta side effects

J

juliao

Member
Messages
12
Hello exenatide users
I have read many of the posts on the byetta thread, but have only come across the drowsiness and nausea side effects.

I am currently trying to acclimatise to byetta, which for me is a slow process due to missing intestinal and bladder bits. I have a colostomy and urostomy.

I know exenatide slows down the absorption rate of nutrients, being a sensitive lass, this slowing down has a knock on effect to my bowel movements which can cause constipation etc. I also can only describe another side effect as nappy rash and was wondering if anyone else had experienced urination problems in general. I know kidney problems are a possible side effect

I do find the leg, stomach injection sites have different effects, this was raised by my diabetic nurse. I currently have 5mu g in the morning in my tummy and 10mu g in my thigh at night which is helping with nausea as is having my main carb input in the middle of the day.

I also find that exercise has quite an effect on my BG readings, even extra walking. The lower the BG levels become, the nausea kicks in.

I am interested in anyone's comments on byetta as I am not sure if there is anyone else on here with stomas.

TTFN
JUlia
 
Hi julia.

I must admit I am rather confused over your post. I can appreciate you have particular problems that are totally different to most of us Byetta users. It may well be that your dosage is different because of those problems ?
I find it confusing because it seems to be at odds with the way Byetta works and what you are doing in relation to meals ?
Byetta is supposed to be taken no more than 1 hr prior to both your main meals. You appear to be only having one main meal and not when you are injecting. The odd combination of 5 and 10mcg in one day is also at odds with the normal convention. Has anybody explained this to you ?

BYETTA has not been studied in patients with severe gastrointestinal disease, including gastroparesis. Its use is commonly associated with gastrointestinal adverse reactions, including nausea, vomiting, and diarrhoea. Therefore, the use of BYETTA is not recommended in patients with severe gastrointestinal disease.

How long have you been on Byetta ?
What dosage did you start on ?
Are you being seen by an Endocrinologist or just your GP ?

Hope you can answer my questions ?

Ken.
 
Hi Julia,

Further to Ken's comments and questions, we do have one other Byetta user who has found that nausea is much lower if she injects into her thighs instead of her stomach.

Like Ken I am a little concerned that you are having your highest carb intake in the meal where you are not taking Byetta. The whole purpose of Byetta is to help your pancreas to process carbs. It can't do this if you are having most of the carbs when you don't inject!
 
I am being seen by the diabetic nurse.
I was started on 5mu g twice daily at least 5 hours apart and preferably with breakfast and evening meal.
This was increased after two months to 5mu g. am and 10 mu g. pm. I take one 500mg. modified release metformin after my evening meal. This is all I can tolerate.(I was started on metformin but as the dose was increased I became more unwell and my BG readings ended up at 14 on 4 tablets. I reacted very badly to the standard metformin and was taken of it due to pains in my kidneys)

Breakfast does have carbs in it but mainly in the form of a banana and natural sugars from fruit and milk. I have a couple of regular breakfasts, stewed cooking apple-no added sugar, banana and plain natural set yoghurt. the other is tomato mushrooms and a slice of seeded bread toasted, these do not cause nausea and have been okayed by my DN

Lunchtime is usually where i have bread, if i didn't have any for breakfast or a jacket potato. I dont eat pasta as it puts up my BG levels as does nice crusty white french stick ahhh

Evening is a protein, fish, chicken etc and vegetables.

I cook and prepare all my own food saving bread.

I tried porridge for breakfast but it made me ill for two days, most high fibre carbs upset my stomas, refined carbs make me feel sick. Hence I eat the jacket potato for its skins

If I manage to exercise my BG goes down way below 7(4 to 5) if I dont exercise it sits around 7 to 8 prior to testing before my evening meal. My blood fasting reading in the morning is relatively high, not sure why, around 9 it doesn't go down any further than 2 hours after my evening meal.

I do not see any gastro specialist as all my surgery has been for cancer and I am still under the Royal Marsden in Chelsea, who discovered the diabetis at one of my routine check ups-I have had MANY blood tests over the past 6 years so I am of the opinion that lack of exercise is the main reason the diabetes has developed and lack of exercise is due to arthritus, as previosly I never tested positive, not even during pregnancy.

Both my GP and DN regularly scratch their heads as to what to do with me.

My main fear is that my kidneys are going to suffer, and that was before the diabetes was diagnosed as I already have a 1 in 3 chance of developing problems due the urostomy. I had my 3 monthly blood test today so that result will be in soon, hopefully with an improvement as these in the past have shown mild leaky kidneys. They do not do urine tests as they get a false reading due to the urostomy.

I am quite well informed about foods and nutritional content as I taught food studies and IT for many years before being diagnosed with cancer. As always knowing something is one thing doing it for yourself is another.

Any other comments would be appreciated

LOve and peace
Julia
 
Hi Julia.
Where do we start ?

First of all Byetta should be taken Am and PM with AT LEAST 6 hrs between your injections which should be no more than 1 Hr before food.
The dosage is not at all in accordance with what is recommended anywhere. Either 5mcg OR 10mcg - never both? This is totally illogical. i even asked my own Endo and he stated that it was totally wrong !
Who actually put you on the Byetta ? Your Gp or did you see an Endocrinolgist ?

I'm sorry but your Diet menu is not good, high GI foods and Carbohydrates - all guaranteed to elevate your Bg levels. Sorry. I don't care that your DN has OK'd them. They are not recommended for a Diabetic. Read a lot of the posts on here. Jacket Potato etc again high GI and Carbs.

The recommended Bg levels for a T2 Diabetic are as follows:
Fasting (waking) .....................between 4 - 7 mmol/l.
2 Hrs after meals.....................no more than 8.5 mmol/l.
You should try to stay within those levels.

Exercise and Carbohydrate intake are both interconnected. Too much or too little carbs will have an effect on your Bg levels.

I can understand why your GP and DN scratch their heads, they seem totally out of their depth. All the more reason to see an Endocrinologist for better treatment.

I am sure you are a great Cook and you know much about Nutrition etc. Unfortunately a Diabetic Diet can be many things. It is not usually a 'Normal Healthy Diet.'
You need to work out what is best for YOU and then I am sure you will see improvements, despite your other complications.

I am sorry if it appears to be all criticism, but I would be failing you if I wasn't totally honest with you.

Ken.
 
Cugila, I know where to start with my response
I am totally aware that a diet can be many things to a diabetic, I try not to repeat myself as I feel it gets a bit boring. I grew up with a diabetic,my mother, my father became diabetic, I have lived with diabetic diets of one shape or form since I was 8 years old, I am now 51. :lol: I have close friends who are diabetics, Type 1, and Type 2 bought about by various health issues from crohns medication to kidney transplant medication to life style to pancreatic cancer.

I never said I was a 'good cook' just that I prepare all my food. therefore I know what goes into it and as such If I eat cauliflower cheese that I have made it increases MY BG by no more than 1. I know what my body responds to. For example the sugar used in smoked salmon does not agree with me, so I do not eat smoked salmon any more, Unless its the really pricey stuff from Fortnum and Masons- I wish :) I have a degree in food and nutrition.

I cant see what is wrong with PLain yoghurt and stewed cooking apple, apples are one of the lowest fruits when it comes to fructose, plain yoghurt only has a little lactose in it. and as for banana. it is a slow release carbohydrate. After injection then breakfast my BG is lower than fasting BG. The apple helps to combat the slowing down effect of the exenatide

Discussing my mediction with your practitioner, is basically unprofessional, both on your part and theirs to even offer a comment. A big disclaimer is needed here to protect yourself. Fortuneately I check things out with professionals, My current Diabetic Nurse Specialist (DN/S) is attached to a hospital and qualified sufficiently to teach other professionals. The hospital I attend has a dedicated diabetes centre. However others may not and this is a big risk you take.

I am totally aware of the time the injection has to be taken before food and follow this religiously even to the point of leaving my food to get cold on sunday because i forgot to inject when I had visitors.

I am aware of the levels I need to aim for, but Rome was not built in a day and due to my internals I did not jump immediately from 5 mu g twice a day to 10 mu g, instead, due side effects and high morning readings it was suggested that the evening dose be increased first. As I am still being acclimatised to the drug I expect I will increase to 10mu g twice a day in two weeks time, the side effects have not worsened but are still there- which is what my initial enquiry was about.

I really want to avoid insulin for many reason so I would like to know if people who are taking Byetta (exenatide) have experienced any urinary problems as since taking Byetta I have developed a sore area on the skin around the urostomy site which is like bad nappy rash. I develop more nausea the lower my BG readings are. Toast makes me feel more sick than bread. Fresh fish is great.

I do agree that it is important to reduce carbs, but I also believe that over a period of 24 hours a sensible balance of foods is necessary to maintain a healthy body. Anyone who thinks diabetes is the only reason for an amended diet is fool hardy. NSP is an important part of a diet and should not be totally excluded without constant medical supervision, which is a risk when following a very low carb diet. Diverticulitus must be a heightened risk

I appreciate that you took the time to respond to my posting, and that you have read many posts and that you have a lot of experience in the area of diabetis, Thank you.

Love and peace
Julia
 
Julia,with all due respect,you asked the questions.Ken gave you the benefit of his experience,no breach of confidence has taken place as he asked a general question to clarify a point.
 
Hi Julia,

To answer your question regarding Byetta and urinary problems, as you are aware Byetta is contraindicated for patients receiving dialysis or who have severe kidney disease. I correspond with several hundred Byetta patients in both the UK and USA and I have never heard a mention of urinary problems, but then I have also not come across a Byetta patient with a stoma. Your situation may not be unique but it is certainly outside of my experience.

As regards your other questions, you asked for our advice and were given this on the basis of our experience and knowledge of the medication, its use and its properties. I agree totally with Ken's thoughts on the management of your diabetes by your health care team and Ken's action in checking with his own endo before responding was because of his concern for your welfare. It was well above and beyond the call of duty and in no way compromised your anonymity. The professional advice that you have been given seems to be, at best, poor, and displays a lack of understanding of the medication. You may have absolute faith in your DSN. That is entirely your own choice, but I have had experiences with many patients who have received information from DSNs that would make your hair curl. The response Ken had from his endo should at least ring a warning bell - or maybe its a case of "Oh no sargeant major, it's the rest of the regiment out of step, not me!"

You asked for advice and we have given it. Whether you choose to accept or reject that advice is of course your decision.
 
I am interested in the side effects.

As I said I am in the process of acclimatisation with byetta.

The only deviance from the guidelines in my taking of byetta is an interim period of 5 and 10 rather than jumping from 5, 5 to 10 10 each day, the final dose will be as norm. I am aware that this transitional period is unusual, as is my GP practise and the other DNS at the hospital. You were not telling me anything that I did not already know. Instead of 'Telling Me' Perhaps I could have been 'asked why'

I did not need to be told what my BG readings should be. I did not ask for that input.

I do not wish my meds to be discussed outside of this forum-it is not professional, claimed anonymity or not it is open to abuse.-you respond with 'professional' information but don't site your references(see Vildagliptin). If I wanted to address a medical panel I would do so in private.

I enlarged upon my original post in the light of the responses. I really didn't want this extent of dialogue, I find it unhelpful and stressful.

I also find the thread for byetta unhelpful as it goes on for 45 pages toooooo much to wade through.

I just want a dialogue about side effects.

I know, because of the extent of my health issues that sometimes procedures break the rules because there are no rules for my situation-they are being created on a daily basis by me.
Diabetes has common threads for everyone, but equally it is unique for everyone.

I am not stupid, I do not need to be negatively criticised, Critiques should be positive and supportive, if a poster feels they need to apologise for their criticism then maybe it needs to rephrased or not posted.

If this be the nature of this forum then I will delete my membership as I have not found this a pleasant experience.

Love and peace
Julia

PS I know each forum is different but I have to say the best one I have come across is Jo's Trust, obviously not one for Diabetes but it is managed in a great way and an excellent example of good practice
http://www.jotrust.co.uk/let_s_meet/index.cfm
 
Ahem, if I could interject and bring this thread back on track.

Dennis suggested some time ago that we should have a separate forum for Byetta users, due to the sheer scale of the Byetta thread. Whilst I think that this may be too much of a niche, perhaps we should have a forum for medication and side effects? Would appreciate some ideas on this, and please, no more arguing.

It's clear to me that people are only trying to help each other here, let's not let that fact get bent out of shape.

:)
 
A forum for medication and side effects is a good idea.Perhaps too,our Byetta users could get together and maybe write a condensed byetta users guide so that the info on the thread is consolidated for new users.
 
Hi All

I agree with a medication and side effects forum and think a lot of people will benefit from other peoples knowledge which is what this forum is about.

I also think a Byetta forum would be a good idea just for the sheer volume the thread has and as it is a new 'miracle' drug many including myself are benefiting from sharing their experiences.

And would also like to add, that if people are going to be upset with being discussed outside this forum, then they should not post due to the fact that this it the tinternet and not a secure site which is why we have ID's to remain anonymous. This is one of the reasons why this site is so successful as people do get discussed and generally by working together sharing information good support and advice is given. whats that saying 2 heads are better than 1

Juliexx
 
45 pages for a thread dating back so many years, just where do you begin.
I would appreciate a dedicated Byetta area and it seems others would too
Julia

Also
"And would also like to add, that if people are going to be upset with being discussed outside this forum, then they should not post due to the fact that this it the tinternet and not a secure site which is why we have ID's to remain anonymous. This is one of the reasons why this site is so successful as people do get discussed and generally by working together sharing information good support and advice is given. whats that saying 2 heads are better than 1

Juliexx"

Yes that is true, but hey, lets get the facts together first before asking advise on someone elses behalf, especially as it was not the advise that was asked for. And maybe with a little more understanding more pertinent advice could have been given, even though not asked for.!
 
sugarless sue said:
A forum for medication and side effects is a good idea.Perhaps too,our Byetta users could get together and maybe write a condensed byetta users guide so that the info on the thread is consolidated for new users.
Click to expand...

Agreed!

There used to be a Byetta forum but like the thread on here it got a bit big (initially it was a US forum as the stuff was out there years before being introduced here)

Julia, I think the information you have recieved is worth what you paid for it <G> unfortunately people are shooting in the dark as your combination of conditions is a bit unique and would best be addressed by medical specialists who are capable of working as a team

just my opinion
 
I agree T, unfortunately, my health care is such that no one hospital deals with me. My local hospitals just don't go there when it comes to the cancer treatment I have needed, aren't even allowed to do the operation. SO off I went to London, The Local Stoma Nurse Specialists will not tread on the toes of the diabetics, And My Cancer Nurse specialist left and I now only have someone in LOndon-

The main problem I have had with byetta is that it has changed the texture and fluidity of my faeces causing it to be sluggish. It doesn't vent through the normal way but exits through a stoma(hole) into and contained in a bag stuck to my belly. If my faeces are not free flowing there is a backlog(called pancaking), the bag pushes off and a nasty mess occurs. I have no control over my faeces output-less than a baby. This would be similar to someone becoming constipated.
Consequently It took me two months to settle down on 5mu g twice a day and because of the accidents I had had, walking round sainsbury's smelling of poo was just mortifying, they decided initially to only increase one of my doses so that there would be less risks of a similar occurance again.
Having spent 6 weeks on the interim dose I have today started the two doses of ten a day.

I am now crying explaining this. The next few weeks will be stressful to say the least.

I have been advised not to use this site by healthcare professionals because of what C said.

Of course my care is unauthodox-my life is unauthodox- I just wanted to talk about the side effects generally without people ganging up on me because I did not agree with what a couple of moderators said and without them passing judgement on my treatment plan.

If just one person came forward and said I am diabetic and have a stoma I would not feel so isolated.

Love and peace
Julia
 
Julia,

Good luck in your treatment. This forum, like all forums, is something of a double-edged sword. There is helpful advice in abundance and I hope people in similar situations come forward to support you and that you can learn more about Byetta side effects. However, every person is different and advice is never 'one-size fits all.' Please take what you need from the forum and I hope it is of some help to you.

Because of this thread we will build a 'Medication & Side Effects' subforum early next week, thankyou for highlighting the need for this and, fingers crossed, this subforum will go on to help hundreds of people.

Kind regards,

Admin
 
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