I started on Byetta in April of 2008 (I can’t believe it’s been this long already). I started on 5mcg for 2 months, then increased to 10mcg’s. OMG, I was SOOOOOO nauseous; complete with not keeping food down. It just got to the point that I could not tolerate the side effects anymore. I called my doctor, and she just said, “well, you need these shots. There’s nothing we can do.”
So, one day, I was at work, and I kept dry heaving into the garbage can next to my desk (I’m sorry for the graphics!) This would happen often, but this particular day, I just couldn’t take it anymore. I started to cry! My boss came into my office and noticed that I was not well. I talked to her briefly (she did not know about my diagnosis and I’m never sure how much to share). Then I went to the doctor (which my boss later gave me a demerit for leaving work in the middle of the day). Then my doctor saw how sick I was, and how sick I had been. I had really tried to tolerate this drug.
I took a 2-week break. Then started back on the 5mcg dose. The nausea is not as bad, but it’s still a problem. Soooo, I got so discouraged that I just stopped taking the injections. My sugars have been high for several weeks, and I just kept ignoring it (I’m type 2 - metabolic syndrome). I started again on the injections late last week, but last night I went out with friends and have french onion soup and was SOOOOOOO nauseous. I went to the bathroom several times to be sick to my stomach (is there any “nice” way to say that?)
Anyone else have this experience? Maybe, If I can back on my schedule and eating plan, I won’t be so nauseous anymore? But I got so discouraged, that I kinda gave up with all of this stuff. Maybe I just want to give the Byetta up totally (it’s been a roller coaster with side effects- but it helps my sugars). Is metformin better, concerning side effects?
I have to stop being so discouraged… I have to get back on the ball somehow!
THANK YOU for listening, and for any feedback or encouragement!
Melanie: STOP! Don’t be discouraged. Hasn’t your doctor ever heard of other insulin type therapies? You don’t have to put up with being sick. DEMAND that the doctor switch to something that won’t make you sick.
By the way, didn’t I hear that there was a problem with Byetta recently? Weren’t they cautioning people about it and aren’t they about to remove it from the market? I DID hear something. Please check it out.
Whatever you do, don’t stop any therapy without a replacement one in hand. If your DR is not an endocrinologist, then get one!
Lots of love and hugs!
Lois La Rose, Milwaukee, WI
That is a shame the awful reaction you have to Byetta. I was going to ask about adding it to my insulin for weight control. Not sure now. So far a low carb diet with a good amount of a slow acting insulin and with a bit of fast acting before meals. Seems to do the job. Insulin has no bad side effects except for weight gain that you have to counteract somhow. Many say low carb diet serves them well. Possibly a tremendeous amount of exersice would also do. If you think you could cope with either of these lifestyle changes or even better both, them I would suggest to go on insulin. You can control the BG well without feeling nauseous.
Yes, if you’re type 2 and not on metformin, for heaven’s sake get on metformin. Some folks have gastric side effects, but for most people it is fine and does what type 2s need done, that is, helps insulin get into the cells. It is THE first thing to try for type 2. Why would your doctor put you on a scary drug like Byetta without trying metformin first??? It sounds like this drug is absolutely not working for you, and you need to get off it!
Meet one of the public that can’t take any form of Metformin! I have irritable bowel syndrome to begin with but, when they put me on Metformin, it drove me crazy with intestinal cramping and a damn good case of the trots each time I took a pill!!! Arrrrrrrrrrrrrrrrggggggggghhhhhhhh! Lois La Rose
Dear Lois. did you or any one else try the slow release formulation? I am going to try although in my case I develop severe fatigue after a few weks on the stuff otherwise it is good.
There are not too many choices for insulin resistance except metformin. My body does not like the stuff. In my case Avandia did absolutely nothing for the average BG readings and did absolutely nothing for smoothing the peaks. I even wondered then if insulin resistance was the main issue. I demanded to be put on insulin wake up numbers were getting high like yours. Plus I had no sucess and no control with the oral drugs nor did my brother that ended up with gangreened feet.
Insulin great except for a 40 lb weight gain. Very low carb diet a must in my case or insulin, carb death spiral will occur. Still looking at any other alternatives because I would like to eat more fruits and the occaisional grain product but a present I cant or will end up 500 lb or dead whichever comes first.
You don’t need Byetta. Your doctor has been seduced by the lies of the drug company which claims it regenerates beta cells based NOT on examining beta cells but only on massaging statistics.
Byetta is only effective for 1/3 of those who take it.
You should find a new doctor who isn’t so influenced by drug companies!
You can read about the published research about Byetta here: BYETTA
No, I didn’t. By the time they brought out the slow release, I was probably on insulin. I am a long-time diabetic and this occurred quite a few years ago. Thanks, anyway.
Lois La Rose, Milwaukee, WI
Lois and Anthony, after several years of taking metformin with no problem, a couple years ago I started having regular diahrrea several days a week (in the bathroom 3 or 4 times a morning), but it’s still worth it to me to keep taking it (fortunately I work at home). Those side effects are more tolerable to me than the ones that can happen with other meds. And Anthony, I tried the extended release for a couple months. It didn’t help for me. I hope it does for you. We all have such different reactions to things. And, in my situation, those reactions can change over time.
There is nothing wrong with insulin for good BG control. The weight gain is a big problem. It may be manageable witha low carb diet and as much exercise as you can do. I think I have stopped the death spiral and may be loosing weight. Not whistling Dixie before I loose 10 lb and keep it off for a year. Empirical feelings are that I am much less hungry than on high carbs.
Those are bad odds for something so expensive.
Lies, damn lies and statistics. I was thinking of linear regression that a company was trying to use with selectively chosen data to prove that cloud seading increased rainfall. I am sure Pharma has many PhDs in statistical massage.
Any ways low carb really works to control hunger and there is a multitude of reasons for that.
I was diagnosed with Type 2 in 1994. At first diet worked just fine. Two years later I was prescribed Metformin ER. I am now taking 1000mg in the morning, 1000 at lunch and Actos 30mg in the evening. When I test, my numbers are always good, and I don’t get nauseated.
I would recomend trying Metformin. Suggest it to your MD. It’s worth a try.
Oh, Melanie - I’ sooo sorry this has happened. I’m just about to go on the 10 mcg dose. I had severe nausea and gas/bloating with the first two weeks of being put on Byetta. But, it has done wonders for my sugars and my weight loss. I lost 5 lbs. in two weeks - just from eating less. Metformin, which I’m also on, causes me to have socially unacceptable diarrhea (is there any other kind??), especially when I’ve eaten something bad…
I do hope you find a good balance. Maybe some Lantus would be better?
Keep us up to date.
I’m trying to begin Byetta after researching it fairly extensively. After getting my A1C back down using Levemir injections, I’ve gained weight chasing me blood sugar lows. I’m hoping Byetta reverses my weight gains.
I’ll cut to the chase. Of the many comments that I’ve read of Byetta users, it is VERY very important that the timing of the shots vs the meal be adhered too. The directions say no more than one hour before breakfast and dinner but users report best results doing the injection 15 minutes before the meal.
I know this is more than a month after your message but I just came across it doing a Google search about Byetta.
As a post script, the concern about pancreatitis, as I understand it, is based on incidents that are as frequent for people not on Byetta, so it appears that the concern is just being on the side of caution rather than being directly traced to Byetta itself.
I used to take Byetta for several years with no results…BG wise and weight wise. I was tried on everything from Actos to Januvia to Janumet etc. All with horrible side effects. I was finally put on Lantus and then Apidra. I take 40 of Lantus every eveing before I go to bed and then I use Apidra with meals dosing for the carbs. I have had a huge difference in my BG reading with getting my fastings down to anywhere from 108 to 118 in the am.I have to titrate the evening dose of Lantus to get the effects I want of the BGs in the am and the inbetween meals. I am still having problems with highs BGs after meals even with the Apidra. So the Doc added Symlin to my regimin. What a God send! I have been on this since the 13th of last month and woo hooooooo those PPs are lookin good!
There is some problems with first starting it,Nausea,Belching…etc. But ya have to tough it out and it goes away in a few weeks. I believe it also helps with that weight gain. There is a video on Andreina’s site with Dr. Edelmen and another doctor,he is on Symlin and has been for years and swears by it, Go watch it and if you think it is for you ask your endo about it. It is used by both T1 and T2s that are on insulin. It puts back the Amylin in our stomachs a hormone that that is usually messed up with us diabetics. Just watch the video. I would put a link here to it but I dont know how to do that. So just go to Andreina’s page click on her videos and then go to the one with Dr. Edelman and symlin. I love this Med!
Hope this helps
I AGREE!!! In fact, I quit taking so many of the meds that I now consider “poison” because of the side effects and risks associated. I read Jenny’s book - and I believe it saved my life - but I spent 2 months testing and trying things out and am now off everything except Lantus and Metformin (and a very tiny amount of blood pressure med, which I plan to stop soon) - including NO cholesterol statins - awful, awful, awful.
It’s amazing to me how much we go through to (a) avoid going low carb and (b) avoid insulin - but insulin is, IMHO, the least harmful. Although, I am going to switch to Levemir as I am sometimes experiencing the pounding heart thing that Jenny mentioned in another post - but can’t yet determine if it’s the Lantus or bp med.
Anyway, anyway - I’m so sorry, Melanie - I know this can be so frustrating. But life is too short to feel so awful.
I wrote on another blog, but I’ve been on 1000 mg. 2x’s a day of metformin hlc. for about 5 1/2 weeks. It seems like since I’ve been on it I lost my appetitie, get full quicker, feel bloated, and lose weight really easily when before the drug I had a hard time losing weight. My stomach often feels like s…t., sort of like being pregnant. Hasn’t anyone else had this experience or isn’t it the drug? It has helped my levels though. They have gone from a fasting of over 300 to about 114. Irene
Byetta isn’t for everyone, just as no drug will work the same for every person. If your doctor refuses to change your meds, fire him. There are other doctors out there who may be a better fit for you.
As for going off of medications, watch what you read. There are plenty of people out there who would advise you to never take any type of medication as the pharmaceutical industry is evil. And, while there are things they do that our wrong, many of us would be dead without them, especially our Type 1ers.
Research. Seriously, do the research. There are plenty of reputable places online to find out about medications, diabetes, and any other conditions you have.
Byetta works for me, it keeps my BG down and has reduced my appetite. I have had to go on and off of it with having a nephrectomy (unrelated to diabetes, i have/had renal cell cancer).