FDA Warning On Byetta - Is It Safe?

If you are worried about taking byetta, try symlin. It is like byetta as well. Symlin is the synthetic form of the hormone amylin which diabetics no longer make.

Cody

I, too, was advised to take Byetta when I spoke with my Dr. about the frustrations of weight gain. I have a history of Chronic Pancreatitis since 1991 and my Dr. has been treating me since 1992 or 1993, when I had 40% of my diseased Pancrease removed surgically.
I began Byetta, only for the side effects of nausea, flatulance, abd. pain to begin within 24 hours. I gave it a couple days to see if I would adjust, but the pain only got worse. I went into ER at our local hospital, was admitted and diagnosed as Pancreatitis.
Was there enough information on the Pancreatitis side effects on 10/1/07 or did it come out later? I would really like to know if my Dr. put me on it, knowing my health history, without checking all side effects of Byetta. I’d like to know.

Thanks

i had pancreatitus and nearly died from it.mine was caused by depakote that i was taking for epilepsy.

Gee Whiz! On top of everything else taking Byetta for exactly one month now has put me through, now I have to worry I might get this terrible side-effect of Pancreatitis, too? When my endocrinologist put me on Byetta (been on Metformin for years and still am taking it with the Byetta), the ads for which I saw on TV, she didn’t tell me anything at all regarding what I might experience during the adjustment period. Usually, I’m good about such medical details, but in the excitement of having this Byetta enable me to lose a lot of weight, I didn’t think about it. After suffering from periods of tiredness, bloating and burping from gas, feelings of fullness, nausea and vomiting, my doctor told me to take the Byetta just once a day until I adjust. So, that’s what I did - and I still am suffering to the extent that I wanted to stop taking it. However, my doctor “strongly advised” against doing that and told me to tough it out for six to eight weeks meaning another two weeks to a month more before I do anything, because she really wants me to lose the weight. Right now, I’m ok. Didn’t vomit today. I did get tired, but it did pass. Although everyone’s body is different, I think what one has to do is take the Byetta immediately before one is going to eat a meal to avoid the nausea having time to kick in. If one takes the Byetta, say, before eating a bowl of cereal and nothing happens but then eats a big meal several hours later, the nausea could kick in several hours after that and ZOOM! - dash to the toilet bowl. That’s what happened to me yesterday. Today, I didn’t take my once-a-day 5 mcg shot until I ate dinner and had no problem. We’ll see what tomorrow brings.

What Byetta is in effect is actually a chemical intestinal by-pass! The drug gives one all the symptoms one might have after getting the operation. One can’t eat the same way one did before being on Byetta or else one will suffer - which one might do, anyway. The side-effects I’ve described are very common. So, I think one has to learn how to live on Byetta by learning what they can and can’t tolerate eating, such as not eating gassy foods, and when it’s the best times of the day to take the shot. At the rate I’m going, I can’t see myself taking this stuff more than once a day unless I adjust really well to the once daily after a while. It really becomes a quality of life issue. If I do adjust to it in time, I’ll stay on it; but if I don’t, I’m off it for good. I actually think my blood sugar readings were more stable before I started Byetta, because they can range from 79 to 136. Before I was on Byetta, they stayed pretty much in the high 80’s to low 100’s. My case of diabetes isn’t really severe, and I don’t have any neuropathies or organ damage after all these years (was diagnosed in 1992). What are other people’s experiences with adjusting to Byetta, and can some helpful suggestions be offered here? Can it really take as long as two months to adjust? Has anyone taken longer than that to adjust? When does one know when it’s time to give up on the Byetta, if one’s not adjusting well to it and can’t tolerate it? How much weight loss - from a lot to a little - have people experienced since starting the drug?

I have been taking byetta for 3 months now. I still vomit at lwast 4 times a week and I do get stomach cramps. I have told my doctor but he feels I need to stay on it. My blood sugar on byetta has gotten so good from 200-300 daily to now consistently 110-120.
I have also lost 28 pounds since I started. Probably because when I eat I get sick. I am close to finding a routine of how to eat. I guess what I eanted to say was with the weight loss and the good dugar levels the side affects are worth it.

I am not trying to frighten anyone but my husband was type II Diabitic and starting taking Byetta in Feb 2006. He never felt good after taking it but his Doctor kept saying the side effects would wear off. They didn’t and by July he was so bad he couldn’t work and went to his Primary Care Doctor who did an endoscopy and said he had gastritas and a week later I took him to the ER where he was admitted with Stage 4 Pancreatic Cancer and died September 1st 2006.

More testing needs to be done to determine the safety of these drugs before they are used on people who become the “tests”. The Pharmacutical companies only care about the money they make. Any medicne that gives you those types of side effects cannot be safe. My advice if you have side effects stop until more information on this drug is available.

I have been on byetta for about a year now and, after a week of adjustment, am experiencing no side effects. I have also lost 30 lbs since beginning treatment with it.

There are 3 steps you can take to lessen the digestive side effects:

1) Do not overeat. Byetta slows food absorbtion to the point that eating too large meals can lead to nausea and vomiting.

2) Eat immediately after taking your shot. This will help keep the nausea from getting started. The only downside to this is you will lose some of the appetite suppression effects.

3) Ginger is your friend. It must be something containing real ginger, not ginger-flavored. I have found 3 swallows of a ginger beer works well for me. In a pinch I have eaten a couple ginger snaps or a pice of ginger candy and those have worked as well. These things are high in sugar though, so don’t overindulge; if it is going to work for you, a small amount will do the trick. You can also try ginger tea and sweeten that artificially if you like.

I found this and other good advice/info on lessening and mamaging side effects on the following websites;

http://www.diabetesmonitor.com/byettafaq.htm

http://diabetes.blog.com/1181902/?page=last#cmts

I have been taking Byetta sine July 2006. My bloos sugars are great. I had a difficult time adjusting to the drug, nausea daily for the first month, then again when the dose doubled. I have since learned which foods may trigger it, and not to over eat. I have lost 60 lbs. I feel great and now have relatively few days where I vomit.

My mother started Byetta 04/2005. In 01/08 she had nausea, vomiting, pain in back and shoulders. Said she felt like her food wouldn’t go down. Lost 50 lbs over the 2 yr period. Drs finally did scope on 05/13/08 to look at gallbladder. Found stage IV pancreatic cancer spread throughout the abdominal wall and cavity. She died 05/21/08. I had been signed up to get notifications from Byetta.com. Never received any about acute pancreatitis and 30 people that had been on it died.

I’ve been on Byetta for only one week, and just went from 5mg 1/day to 5 mg 2/day. The doctor is taking it slowly–he takes the drug himself, although he didn’t tell me that until today.

Drink lots of water–really, lots and lots of water.

Eat very small portions–think as if you’ve had gastric bypass and can’t eat more than a computer-mouse sized portion of anything.I eat a very small breakfast of nonfat cottage cheese and toast, a mid-morning snack of a carrot or apple, then a small snack of yoghurt or apple in the afternoon, and very tiny portion of dinner. I try to avoid bread or other starches–it makes me gassy and I burp all night.

I eat immediately after the injection, so there is virtually no nausea–it was worse the first couple of days but now its more of a mild discomfort.

I eat 4 prunes at night–I’ve read of people who have diahrrea but byetta seems to cause constipation in my case.

I’m going to follow Rachel’s advice and go drink some ginger tea .

I am a Vietnam Vet suffering from Chemically induced Diabetes II. No one so far has stated that INSULIN MAKRES YOU HUNGRY! Not users, drs, pharmacy and then wonder why we gain weight. If Byetta is compared to Gastric Bypass which has the greatest ratio of death? Is Lapband the safer way?

Last time I posted here was on 1/5/08, a month into taking Byetta. As of this posting, I’ve now been on the Byetta for seven months, having changed my dose from 5 mcg. twice a day at first to 5 mcg. once a day to minimize the side effects until I got used to it, and now 10 mcg. once a day. I take the shot just before I eat, and the 10 mcg. once a day lasts all day. Obviously, I made it through the hellish two-month period of getting used to the drug and am glad I did. Only rarely now do I have any twinge of a side effect and it passes quickly. Most of the time, I’m fine. Since I can’t eat nearly as much as I used to - remember my having said in my first posting that taking Byetta is like having a chemically induced gastric bypass - I’ve lost 35 lbs. and am still going down. We’ll see how far down the scale this Byetta takes me. I feel lighter on my feet and have more energy. My clothes fit a lot better, too! My sugar level readings are in the high 80’s to the 90’s. I can still enjoy all the foods I love - just eat less of them, and that’s fine with me.

Before I was diagnosed in 1992 with Type 2 non-insulin dependent diabetes, I was at my fattest ever at almost 190 lbs. I initially lost 40 lbs. after the diagnosis but gained back about 18 of it before finally going on the Byetta. I was 168 lbs. at that time and am now 143 (only 5 feet tall), still too much for a little bit like me but a whole lot less than I’ve been in many years. Taking Byetta has been the only way I’ve been able to lose lots of weight. My total weight loss from my fattest to now is around 50 lbs. with a little allowance made for small weight fluctuations. At the age I am, I’m willing to settle for 130 lbs. which is still overweight for my height, if I can go that low. Will wait and see. It sure feels good when I weigh myself on those doctor office scales with the weights for me to be able to move the metal weight from the 150 mark down to the 100 mark and count up from there. Next time I see my doctor in a couple of weeks, she can no longer tell me I’m morbidly obese, her way of trying to scare me straight. With Byetta, I’m able to control the food intake and am not ruled by my appetite. That’s very liberating, indeed.

Terribly sorry about your husband’s untimely death, Sue Messina, who posted on 1/9/08, and for the death of your mother, Adrian, who posted on 6/29/08 - but for me, so far Byetta’s been a real blessing. Hope it stays that way.

I have been taking Byetta for about 3 years now. It works wonderfull for the morning dose but I have to be carefull at my evening dose. If I eat directely after injections, 1 hr after dinner, my levels drop dangerously low. Be carefull and listen to your body. It is a wonderful drug but use it wisely and drink lots of water.

I have been on and off of Byetta. I have made it thru the adjustment period twice now, and the Dr. wants me on it again. I had a lot of low sugars when I took a single pill with it, and I had nausea all the time.
I agree that it is like having gastric without the surgery.
I am concerned about the possible complications with the pancreas though.
Of course I just lost MY husband earlier this year after what was supposed to be a routine bypass surgery. He was only 54.
Wish I could say I lost weight on it, but did not really.
Working on that with diet and exercise.

It has been a real joy to read these comments and find we’ve all shared the same basic side effects. I think we would all agree that the benefits are wonderful. At 38 I suffered a heart attack and had open-heart 3-way bipass. Needless to say, after 20 years my days of smoking were behind me. However, the effects of that were weight gain. From 208 to 288 in a manner of 2 years, which then had its effects. Along came Byetta, which “re-taught” me what and how to eat. After a year I am now at 246 and still going down. When I begin feeling ill or as most of us have stated “get the burps”, I remind myself, as with anything, no pain no gain. Thanks for all the helpful tips..

I have been on Byetta over a year with not much weight loss at all. It makes me feel tired I think and sorta weird. Has anyone had dry eyes from Byetta. Mine are terrible. Thanks

I HAVE BEEN ON A “BYETTA ROLLER COASTER RIDE”………..I JUST STARTED TAKING BYETTA LAST WEEK…….MY DOCTOR RX AMYRL AND THE SMALL DOSE OF BYETTA 2X PER DAY……RIGHT FROM THE FIRST INJECTION I WOULD HAVE VERY LOW BLOOD SUGAR 1 HOUR OR LESS AFTER I HAD EATEN…..THE DOCTOR SUGGESTED I ONLY TAKE 1/2 THE AMYRL….WITH THE BYETTA…
WELL 2 NIGHTS AGO I SAT DOWN HAD MY DINNER AND WITHIN 1/2 HOUR MY SUGAR DROPPED TO 46 AND IT TOOK FOREVER TO GET MY SUGAR BACK TO NORMAL…..IT WAS SCAREY….
I SPOKE TO MY DOCTOR AGAIN AND TODAY IAM SUPPOSED TO TAKE NO AMYRL AND JUST TAKE THE BYETTA…….

I WOULD SO APPRECIATE IF ANYONE READS THIS AND HAS HAD A SIMILAR PROBLEM…WOULD YOU PLEASE E-MAIL ME AT JOEBOTTEGA@AOL.COM…………
THIS HAS MADE ME VERY ANXIOUS ABOUT USING THIS DRUG..YET I CAN SEE THE BENEFIT YOU COULD RECIEVE IF YOU CAN GET IT TO WORK……..THANKYOU………

I have been on Byetta for almost 3 years now. My blood sugars are great and I too have lost 35 lbs. I weathered the first couple of months and side effects are mostly gone now.. some nausea if I don’t eat enough. I have diabetes 2 and also take Metformin.. I used to take Glucotrol and one other one , that was suppose to be dangerous… it started with and A I believe and I’m having a sr. moment… I can’t remember the name of it…but I did come off of those two meds.Byetta has worked well for me.

i have been taking byetta for the past week..i take 5cc of byetta 2xper day and amryl …
since day one i have had very serious low blood sugars…my doctor then suggested i take just 1/2 dose of the amryl and the byetta…this too caused very very low blood sugar…46.b/s…
my doctor then suggested i go off the diabetic pill and only take the byetta…i tried that today and 2 hours after eating my sugar started to plummet again….
i did not take the second dose of byetta this evening for dinnertime…..
iam writing this in hopes that someone who is also on byetta has had a similar experience and could please e-mail me as to how they resolved this problem….

this has been very scarey .. when my sugar drops on byetta it just plummets……..

i look forward to any help or suggestions…..
i was looking forward to having this drug help me…but now iam confused as to what to do……………………

please notify me at joebottega@aol.com…
thankyou so very much

I found that I really need to eat more carbs.. the good kind of course especially when I take my supper meds, which include Byetta. I don’t mean potato chips and stuff.. but my supper meal is usually my main meal.. I know that goes against most diets but I kept on loosing and didn’t have the lows.. I also have a snack about 9pm. I eat a really early supper.Another thing I noticed , my taste changed… I’ve never enjoyed buttermilk… now I do… also cottage cheese.
I remembered the drugs I came off of… they were Avandia as well as the Glucotrol. I found that the Glucotrol is what made me have the super lows. I lost 8 lbs the first week I was off the Avandia .
My Byetta dose is the 10 mcg three times a day… the lunch dose is new and I checked with my pharmacist who told me that he researched it ,as well as my doc, and it would be alright to try.. If I have a day where I’m feeling sick.. I just skip the noon meal dose.. since that is a new dose, I confess , I sometimes forget.
By the way, I’m 51 and was diagnosed with diabetes type 2 in my early 30’s .. before that I was told that I had low blood sugar.

Are you guys also seeing an endocrinologist as well as your regular medical doctors?

I too am 51. I have been taking 10 mg of Byetta twice a day for 2 years. I had a really difficult time when I started. It took me months to get past the nausea. I have since learned what foods seem to trigger my nausea, I can avoid them. It seems it is mostly foods high in fat. I have lost 60 pounds, mostly because I eat very little, usually nuts and fruit for breakfast and lunch as I can snack on them and not get too full. My blood sugars are great, I do take Metformin but have stopped the Actos I used to take in addition to Metformin. I feel good unless I eat against my better judgement.

I have been on Byetta for about 9 months. I no longer feel ill. I lost weight initially. My problem is the pen. I keep getting bubbles and the medicine does not flow properly. It seems I am always getting a new pen alot early then I am suppose to. I do what I am suppose to
do and do not keep my needle on the pen. Does any one have this problem? Thank you.
Judi Goloff

Hi Judi, I have those bubbles too. I don’t see a way to avoid them. I just make sure when I inject that the needle end is lower than the plunger so the bubbles rise up to the top of the plunger end.

Give the pen a few flicks too to move those bubbles.

To Ken: It’s my endocrinologist who diagnosed me having diabetes and who treats it and my thyroid problem.

To Judi: Sure, I have the bubble in the syringes, too, but haven’t had any other problem using the pen.

To all who are new to Byetta: As long as you aren’t suffering in any way outside of the normal side-effects when you first begin taking the drug, just keep soldiering on with it passed the adjustment period, and you’ll be happy you did.

Ken, My primary care doc is an internist. i see him every three months and he runs blood test everytime. Because I take Lipitor he does checks on liver also.
One of the problems I had was using a needle that was too short. I don’t know what that size was now.. but it was one shorter than what I use now.. Short, 8mm (5/16) 31 gauge.
The medicine would leak out the injection sight sometimes if I wasn’t careful and I didn’t get all the medication. That doen’s happen with this size.
Barbra, I too have a problem with fried foods.. in I also have learned to listen to my body and stop when satisfied

How often should we replace the pen. The material says every 30 days, but my pen was barely used at 30 days? How long does it take you to empty a full pen?

Thanks,

Greg Carwheel

I’d like to find out the answer to Greg’s question as well–the literature in the package says to NEVER ever ever keep using the pen past 30 days—but WHY?? These little suckers are expensive and I hate to toss one that isn’t used up for no reason.

I am planning to start Byetta tomorrow. I don’t have a clue as to what to expect, portions to eat, etc. I think I will inject, immediately (5 minutes) eat a small breakfast and wait and see what happens.

Jim,

Eat something low fat, I find berries and nuts or sunflower seeds to sit alright. Higher fat foods seem to increase my nausea. You will feel full faster and I advise you to stop eating as soon as you begin feeling satisfied. Make sure you eat 3 times a day, minimum. I usually eat within 20 minutes of taking my dose. The only side effect I have is nausea, which I manage by avoiding things I have learned will influence it. My blood sugars are GREAT. I have been taking Byetta for 2 years.

Sarah, Greg,

I think the 30 days is like a disclaimer. It is probably best to not go too much beyond but I doubt it will make much difference. I use my pen until it is gone, I take 10 mg twice a day and unless I miss a dose or so it is usally gone within 30 days. Greg, are you doing the initial steps with the pen, making sure the medicine is flowing? Sometimes it takes 2 attempts before it is. A twice daily does should use the pen up within a month.

Jim — ditto Barbara. I have a piece of fruit and a piece of plain whole wheat toast in the morning within 20 minutes of eating. The nausea kicks in at around 30 min for me–but if I’ve already eaten my breakfast (sounds small, but you will be full)it’s not a problem. The nausea does decrease over time–I found the first week was the worst. I also have periodic dizziness. Don’t eat “heavy” foods–the harder it is to digest, the worse your nausea will be. Also, each much smaller portions–if you eat the portions you’re accustomed to eating, that too will make your nausea worse. Listen to your body–if you’re full, stop eating.

BTW, gentlemen on Byetta–the nausea felt like deja vu to me until I remembered why it seemed so familiar—this is EXACTLY what morning sickness feels like when you’re pregnant.

I have been on Byetta since June of 2006. I have lost a total of 115 pounds. But I do vomit at least three times a day. And yes, I feel stuffed all the time and don’t eat much at any meal. I do have a lot of stomach issues going on right now and am seeking medical help for these problems. But I can tell you this…I have never felt better since being diagnosed as a diabetic in 1998. I hope and pray something can be done to help my stomach issues without me having to go off the drug.

Hi, Tammy,

Wow, I’m so sorry to hear of the price you’ve paid to lose those 115 lbs. while being on Byetta. You’ve been on Byetta for two years now, plenty of time to have gotten used to it by now without the nausea and vomiting. I started Byetta the end of last year. It took me two months of adjustment to get past the side-effects, and I’ve lost 30 lbs. so far. I eat everything I like, just a lot less of it, and that’s fine with me to not be a slave to my appetite, anymore. I, too, have never felt better since I was diagnosed with Type 2 in 1992, and the weight loss has helped. I hope you can stay on the drug, that a solution will be found for you, because I don’t know of any other way for we overweight diabetics to lose the weight and keep it off.

How much Byetta do you take? Perhaps your doctor can adjust your dosage. That worked for me during my adjustment period. I started with 5 mg. twice a day and went down to 5 once a day. That did the trick, and then I went back to 5 twice a day and am now taking 10 once a day. The 10 once a day helped me lose more weight and worked better than 5 twice a day. There are ways to tweak it, so don’t give up yet. Let’s hear back from you about what happens.

My mother-in-law has been taking Byetta for over a month now, and for her it has been a godsend. She had been on Metformin and her blood sugers were far too high. Lately, she has stayed at around 80-90. Besides some initial indigestion, she is doing better with the Byetta than with the Metformin, which made her very sick. I honestly hope that in light of the two deaths that have occurred in the last week that they do more research before pulling the drug, because my mother in law is doing so much better. Before Byetta, she didn’t eat and slept all of the time. Plus, she was irritable and tired a lot. Now she has more energy, and she eats the three meals a day that her doctor recommends. To us-it’s a miracle….sorry for those that have had such terrible side effects and illness. I do hope the medication works out for all of you…..

Sabrina, I’m so glad your mother-in-law is thriving on Byetta, but what is this talk about the drug being pulled from the market? You just briefly stated that in your posting, and I had no idea about there having been two Byetta-induced deaths in the last week! Can you tell us more about it? It would be terrible if that drug were pulled, because it’s been the only way I, for one, have been able to lose a lot of weight and keep it off. The thought of my being fat again because of the loss of that drug is too horrible to contemplate. For all the people who’ve been so helped by Byetta - and there are so many thousands more of those than the very few who die - I’m sure the possibility of the drug being yanked is dreadful. A perfectly good drug shouldn’t be pulled just because of a very few who died.

After reading about the pancreatic cancer and the uncertainty of the side effects, I decided not to take Byetta. Yesterday, the AP ran a story about Byetta and adverse effects nationally.
To those who decide it is good for them to continue.
My personal choice was not to.
Good luck to all.

Jim, Sabrina, Everyone:

Thanks, Jim, for telling us what you’ve decided to do. As you said, it’s a personal, individual decision. If you can find another way to lose the weight, keep it off and feel good, more power to ya! I’m doing so well on this Byetta after having gone through the 2 months of adjustment hell the beginning of this year that I would never dream of getting off it now after having lost 31 lbs. and still going. No side-effects, anymore. Just get full faster and stay full is all and, and that’s exactly Byetta is supposed to do and is what I want. Goodbye voracious appetite and hello to freedom from it!

Sabrina, I tried to post several times the latest FDA warning statement and info on this site which my pharmacist brother-in-law sent me today but for some reason, the ‘puter wouldn’t allow it. Basically, it talked about those pancreatitis deaths, stopping the drug if one is having certain stomach pain and problems but NOT anything about banning/pulling the drug off the market. Too many people are so happy and doing so well on this drug and consider it a Godsend, I guess. Some drugs do get pulled, as we’ve seen happen, but I sure hope this isn’t one of them that eventually does. If I listened to my brother-in-law about a lot of the drugs I’ve been taking over the years which have so helped me lead a better life, I would be in big trouble, but I appreciate his concern.

Do any of you have problems getting this medication covered by insurance? Any authorization requirements or quantity limits?

hi Jan, mine is covered by insurance and I’m allowed one pen per month.

Hi, Jan and Jim - my insurance covers Byetta, too. Same as Jim, one pen a month. If I send away to mail order, I’ll get a three-month supply of three pens. All I do is pay the small copayment. Same with needles.

I have been taking Byetta (10 MCG twice daily)for several months. At first I had no side effects, but now I get nausiated about an hour after breakfast. Sometimes it is very bad. It can last from a couple of hours to most of the day. I am instructed to eat the meal after waiting at least 30 minutes, but not over one hour.

Hi, Alvin H.,

The instructions on the Byetta say one can eat the meal as soon as one takes the shot and for up to an hour later but not more. It might help if you ate the meal immediately after taking the shot before the nausea has time to kick in. Am not your doctor and don’t want to usurp that function, but why not ask your doctor about this and different ways to tweak how you take the drug. Everybody is different. Don’t know why after all this time you’d have such a reaction.

I was put on Byetta 5 mcg’s twice a day starting last October.
I did not like being put on Byetta, in fact I argued with my Primary Care Physician to the point of being told that I had no choice in the matter.
Finally in August the Endocrinologist that I have been seeing agreed with me and took me off of Byetta.
I did some research on Byetta and discovered that Byetta was conflicting with another medication that I am on.
Byetta makes your gastic digestion slow down, hence making your system think you are full.
However I was placed on a medication by my Gastroenterologist the speeds up the gastric emptying.
In the 10 months that I was on Byetta, I never saw any positive effects from the use of Byetta.
I did lose some weight, maybe some 8-10 lbs over the period of time that I took Byetta.
However I don’t know if it was worth the side effects of nausea, vomiting and injection site bruising.
Am I glad that I no longer have to inject Byetta, you bet I am.

I have been on Byetta since May, and doing OK, but my glucose levels still are higher than they should be, but lower than without Byetta. It seems like when I start a new pen, I get more reaction and as the 30 days go on ,less . Does anyone else have this problem?

I started Byetta in February. As long as I eat within 10-15 minutes of a meal, I have really had no more than mild nausea, and my BG is much better. My issue is that even with insurance, it’s a bit more than I can afford.

Other than that, I’ve not had any problems, and have even lost some weight.

Janet:
I agree with your statement about the cost of Byetta, even with insurance.
I nearly had a “heart attack” when I saw my co-pay charges for the Byetta plus I had to pay an additional co-pay for the needles that had to be used with in.
As I stated in my previous my Endocrinologist has discontinued my use of Byetta.
My personal thoughts are that your physician(s) should look closely at all of your medical conditions and all the medicines that you are taking.
In my case, I ended up doing some research, and discovered that the Byetta slowed my gastric digesting and a medication called Reglan was speeding up my gastric disgestion.
The two medications were conflicting with each other and none of the physicians that I see had picked up that.
When I mentioned it to the Endocrinologist said that he had never thought about the possibility of the two medications conflicting with each other.
Everytime that I see a physician, I take a list of the medications that I take with me.

I’ve been on Byetta since November of 2006, I take 10mcg 2x a day. I had no idea nausea was a side effect of the drug, outside of the occasional familial bouts of the flu I haven’t thrown up in the entire time (or wanted to). It was prescribed by my endocrinologist who does blood tests 2-3 times a year including a 24 hour urine test once a year.

I have lost 40 lbs, most of it within the first 6 months on Byetta and then just maintaining that the last year + and hoping to get another kick start to get the rest of the weight off. I have had type 2 for the past 25 years since I was 11 yrs old. Thankfully I was diet controlled for 20 of those and didn’t put on any weight until after the first 10 years. However the cost, $40 copay for 3 mo supply for the Byetta another $40 for the needles (not to mention the insulin, those syringes, the metformin and thyroid meds) really kills me and I wish there was something that would fit the bill and not break the bank.

Taking Byetta or other drugs to manage your diabetes should also incorporate a component of your choice in the matter if you are not physically and emotionally comfortable with the drug, especially when we know the side effects such as nausea,vomiting, and in more serious cases pancreatitis etc.A
bad experience such as Byetta will also impact on the stress level of the individual which is not at all conducive to the well being of the diabetic. Other medications may not lower your glucose levels to near normal range or weight loss benefits as in Byetta. You can always try regular exercise, healthy eating and a few life style changes with the help and support of your friends and family. Thank you.

Dr. “Roger” M. Natarajan
District Diabetes Awareness Chairman, N2 District Lions

Thank you, Dr. Natarajan for your “doctorly” comment. I take Metformin along with the Byetta (10 mcg. once a day). Have lost from my very fattest weight 52 lbs. (gained back 20 lbs. of it before I was on Byetta and lost a little over 30 lbs. since I’ve been on the Byetta). I could not have done it without the Byetta. Don’t get side-effects and the only way I can see my way to keep the weight off is to be a “lifer” on Byetta. For some people, the struggle is just too great. Diet and exercise just don’t do it. Need a way to give us an even chance, kill the appetite that makes us a slave to it - and Byetta’s been it for a lot of us. I have more weight to lose and will speak to my doctor about upping my 10 mcg. to twice a day so I can lose more. Am at a plateau now. I eat everything I want and enjoy - just a lot less of it.

Jennifer, perhaps your health coverage plan isn’t such a good one. Don’t know your circumstances. Sometimes drug companies offer special programs of free drugs to those who are hardship cases. Might try to look into that and see if you are eligible.

I’ve only just heard of the problems showing up with Byetta.

My husband started Byetta, then soon began having regular abdominal pains. He always kept a drug list with dosages with him. Doctors diagnosed it originally as “gas” and after 8 months of being at doctors’ offices & urgent care facilities finally went to a local ER and they immediately saw the problem. Only later did we find out that the original CAT scan 8 months before did show a problem, but no doctors ever thought it was important or anything but “gas”. He was diagnosed with pancreatic cancer (adenocarcinoma)in February 2006 and died in April 2007 at age 57.

He was a big proponent of Byetta, it had done so many good things for him. Never in all that time did we imagine pancreatic cancer could be a side-effect. To think that I lost him after 36 years of marriage due to a potential side-effect to a drug makes the pain and loss much worse.

Please don’t worry about weight - make the decision to take Byetta for the right reasons knowing the potential side-effects (which may include death). AND whatever you do, don’t let the doctor’s get away with making you feel like you’re a hypochondriac because they can’t figure out what’s causing the pain especially if you’re taking Byetta.

I had him for 14 months after diagnosis; maybe, just maybe, if the doctors had listened and diagnosed the disease before it was Stage IVb he may have had a chance. Obviously they didn’t know about the Byetta side-effects - or at least I hope so. They sure didn’t tell us.

One last thing - be vigilent - the average life expectancy for adenocarcinoma is less than 6 months - that’s not a lot of time. Don’t waste time if you don’t get a good answer from a doctor.

Dear CJ,

Am so very sorry for your devastating lose of your dear husband. Someone else on this site wrote a similar story earlier in the year. Yes, it can happen. For me, though, so far, so good, so VERY good, so I’ll stay with it. Isn’t it something how often the doctors “miss it”? And when they do, the consequences are catastrophic and permanently life-altering for the worse.

My mother was prescribed Byetta about a year ago and has had nothing but problems - a steady decline in her health. As of the date of this post, the doctors are running tests to confirm pancreatic cancer. This is breaking my heart.

If you are taking ANYTHING that causes nausea,vomiting, and any other side effects, LISTEN TO YOUR BODY. Those negative responses are telling you that you are putting poison in your system. When it comes to your body, YOU are the expert, not the doctor.

Be well and many blessings -

About two months ago, my endocrinologist recommended I take the lower dose of Byetta twice daily as my insulin and sugar levels are borderline for diabetes. I am also overweight. However, we have been fighting my insurance company since they state I have to try “other regimens” such as metformen, and other drugs first, and show they do not work for me before they will approve Byetta. After reading all the comments on this site regarding the side effects and possibility of death from pancreatitis, I am starting to wonder if maybe my insurance rejection might be a blessing in disguise. Maybe I shouldn’t be using this drug. I have already lost 11 lbs from cutting my food portions. Maybe that is the way to go. Any comments? I was going to pay for this drug myself just to get some serious weight off and hopefully get my blood levels back to normal, but now I am somewhat apprehensive about this drug. My doctor never said ANYTHING about side effects, except to take it right before a meal and he did warn me about possible pancreatitis - but that was with the higher dose.

I’ve been taking Byetta since June, 2008. I started with the lower dose and had minimal nausea. The weight came off, which was good, but more importantly, my blood glucose readings, which had been incrementally increasing despite Metformin, dropped below 100 and stayed down.

I tried the 10mg and found it too strong (I’m small and female). My endocrinologist agreed that I could drop back to the 5 mg, which works just fine and doesn’t have the more devastating side effects. On the 10 mg I had much stronger nausea and stomach pains (a warning sign my doctor had said to immediately report). Since going back on the 5 mg, no problems.

No one knows what causes pancreatic cancer. Certainly I haven’t found any documented link between pancreatic cancer and Byetta. If anyone does find such a link, let us all know, but I worked with two guys in my office who died of pancreatic cancer at a young age, and neither had diabetes or took medications of any kind.

I’d recommend trying the 5 mg and staying there and seeing if it works. You’ve already got half the plan down well by cutting food portions. The Byetta should help immensely in reducing glucose levels. Exercise is another important factor–even a 20 minute walk per day is helpful.

Good luck–Sarah

It was only during that eight-week adjustment period when one first starts Byetta that I had those terrible side-effects (terrible nausea, the vomiting, the gas bloat, tiredness, etc.) and almost didn’t stay on the drug. For me to have given in then would have been such a terrible mistake, because I would never have lost all that weight and feel as good as I do now. I started on the 5 mcg. twice a day and when I hit a plateau with the weight loss, I moved it up to 10 mcg. once a day. Don’t know why, but the 10 mcg. once a day works better for me than the 5 twice a day did and I lost some more weight. No side-effects after upping it, either. Different strokes for different folks, I suppose.

Polly, how’s your mother doing? I hope the tests didn’t come out positive for the pancreatic cancer.

Karen, it’s ironic about how you said your endocrinologist never told you about the possible side-effects one could have when one takes Byetta. Why? Because my endocrinologist never told me either when I first started the end of last year. Therefore, when I had them during that eight week period of adjustment, boy, did it flummox me! She “strongly recommended”, basically forced me to soldier it through those eight weeks. I did and am glad I did. In my case, it worked. What your doctor said are the general directions for how to take Byetta. I must admit I’m puzzled as to why neither of our doctors told us about those horrid side-effects that one might experience during the adjustment period. As for your taking the chance on Byetta, well, Karen, you’ll never know unless you do try it.

Sharon:
Having just read your recent comment, I have to state that in October 2007 I was put on Byetta 5 mcg twice a day.
I did not want to go onto this medication but was told that I had “no choice” in this matter.
I was originally told that this was to be a one month trial after which a decision would be made about placing me on the medication on a permanent basis.
In November of 2007, I returned to my PCP and was told that I again had no choice in this matter and that I would be on Byetta period and that there was never anything said about a one month trial.
At that time I handed my PCP a copy of the October 2007 FDA warning about Byetta. My PCP asked me how I got a copy of the FDA notice, and my reply was that I had gotten it from work. In fact to this very day, my PCP does not know that I have been taken off of Byetta by the Endocrinologist that she sent me to.

From everything that I have seen in recent years, it appears that a lot of Doctors get educated about medicines, like Byetta, by the Pharmacy Reps who visit their offices on a regular basis.
Also remember that with the most recent warning about Byetta, the FDA is also making Amylin and Eli Lilly place stronger warnings about a possible link between pancreatitis and Byetta in the packaging of Byetta.

George Evans

Thank you Sarah and Sharon for your responses to my apprehension about Byetta. It does make me wonder how my endocrinologist would not mention side effects. One thing I wanted to add is that my PCP has very strong feelings about me NOT taking Byetta because of the possible pancreatic ca side effects. I have been having as diplomatic a discussion with him as I can (without even having taking the drug yet!) defending Byetta and why I believe I should try it. It is so frustrating, but I guess like you said Sharon - I won’t know unless I try. My endocrinoligist is now appealing my insurance company, however it doesn’t look good. I might have to take some other medications first. This whole thing is just so upsetting. I just want to get started.

I was on Byetta for one year 10 mg 2x day. After about 6 months I started getting abdominal pains, a few times so badly I missed work. I did lose weght and my sugar was controlled so I stayed on it. Finally my sister read about the side effects and said it sounded like me. I stopped the Byetta a couple of months ago and went to a Gastroenteroligist to find I had an inflamation in my pancreatic and gallbladder ducts. However every week now I feel better and finally am starting to feel normal. I did not regain the weight yet. I do eat less now.

Hi Folks, thank-you very much for posting up your insights and comments on Byetta. My heart-felt condolences for those of you that have had bad dealings with this medication. From the bottom of my heart.

I’m a Byetta newbie. Just on my 2nd day of taking 5mg x2. After reading every one of these posts after waking up at 3am this morning with the worst indigestion, stomach pain, gas, burps, I’ve learned quickly, eat within 15 minutes of your injection,, for me anyway. Breakfast and supper today have been no problem except for gas and burps.

A little background, I’m 47 years old, diagnosed with Type II one year ago. Started with metformin, added Actos 3 months later, and just last Dr’s visit, she took me off the Actos, stayed with metformin and added Byetta. Other than really loose stools and a little bit of idigestion, I think I can hang with this till my body gets used to it.

I’m glad I found you folks at 3am this morning because I was hurtin’. I got some good tips from here too and thank-you all for your posts.

I know, Goobr is a weird name but it’s what all my motorcycle buddies call me.

Don’t worry about your nickname, Goobr, because a little good-natured fun and humor never hurt anybody. It’s really a sweet name. Your motorcycle buddies must really like you a lot.

I’ve been noticing, as I’ve written here before, that the appetite-suppressing effect of Byetta is “wearing off”. Been on it since the end of 2007. After the two-month adjustment process, there were no problems with side-effects, and the appetite-suppressing was great. I’ve gained a couple of pounds and that does scare me after having struggled so hard to lose all this weight, even having bought some new clothes. I don’t eat like I used to, as noted by Eleanor, who I’m so sorry to hear had such an adverse reaction to Byetta, but it does worry me. As I said in a previous posting, my endocrinologist doesn’t want me to increase my dosage, but I want to. I will talk to her about it again when I see her later this month. She wants me to exercise - FAT chance of that happening…

My son who is 21 was diagnosed with diabetes when he was 15. He also has Autism which makes it harder for him to understand the devestating effects that uncontrolled diabetes can cause. He has been been on Metformin for years and until the last 9 months was doing realy well on this. His blood sugar levels are high. They added Avandia to see if it would help bring his number down. It didn’t help very much at all. Then his doctor said something about Byetta but told me this week that there was a new study out that it could possibly cause pancreatic cancer.

I have read all of the posts here so I have read the good and the bad experiences. I was just wondering and should have asked the Doctor at the time where this study is but wasn’t thinking straight after he told me that. So basically my question is has anyone else heard about this study or any news as far as Pancreatic cancer being caused by Byetta?

I have the prescription but have decided not to use it just yet. Since my son has Autism he has never been good with eating right or exercising. He will sneak food. I have talked to him and he does understand to a certain extent how important exercise and eating right is. He does much better if he has a schedule to go by. I have decided to put him on an eating schedule and an exercise program schedule. He said that would help him.

I think my husband and I have decided to go this route to see if it will bring his numbers down before trying the Byetta.

I was really excited when I first learned of Byetta but now I have alot of worries about it.

Anyway sorry for rambeling but if anyone has heard of this study please let me know. In the mean time I will continue to research. I am also going to call his Doc again and see where he heard it from. If I find anything out I will post it.

Thanks,
Madsy

i recently took my husband to er with bad stomache pains raiding to his back very scaring didnt know what was wrong with him finally they gave him a cat-scan showed kidey stones but im ready on the symtome on pancriatic cancer he has all those symtoms im wondering if he has that too cause the pain has not gone away he did have the stone remove but still has pain need some advise should i tell the dr to check for that

by the way he has been on byettta for about 6 months 5mcg

Dear Adel, I would leave no stone unturned regarding your husband’s health especially if you want to have him around for a long time to come. No one will fight for his care better than you who love him, so make a pest of yourself, if need be. Have heard too many tragic stories of about people who didn’t follow through and found out too late a loved one had cancer. Maybe it’s all a big nothing, but you want to know and need to know - one way or the other. Follow your instincts.

I have been on Byetta sinse March of 2008. In the beginning I got very ill.Always had a really bad stomach ache and diarria. I was asked to hang in there. I did.It brought my sugars way down and I lost a alot of weight. Once in a while I do get a tummy ache but not bad. If you can’t take it your body is telling you something. Do what you think is right. Only you know how you truly feel. Good Luck!

Good posting Donna. You said, “Do what you think is right. Only you know how you truly feel”.

That is so true. I’ve been on Byetta for 2 weeks now and I’ve seriously adjusted my eating habits. I am actually looking forward to my next blood test in a couple of weeks to see if any changes and what kind of changes.