Diabetes Self-Management Blog

Good grief. Here we go again on problems with a diabetes drug. It seems we’ve just gotten through the possible heart problems with the thiazolidinedione class of drugs and now we’re onto problems with another class. This month—oops! make that this time—it’s exenatide (brand name Byetta), which appears to be connected with pancreatitis.

Exenatide, approved by the U.S. Food and Drug Administration (FDA) in 2005 for use in controlling Type 2 diabetes, is a synthetic form of a substance found in lizard spi…er, the saliva of gila monsters.

Before I continue, I’m going to point out that there were only 30 cases of pancreatitis reviewed by the FDA out of what I’ve heard are half a million or so users. Also, 27 of the 30 people had other contributing factors such as gallstones, alcohol use, or triglycerides that were w-a-y too high.

And now, back to our regularly scheduled blog.

Also according to the FDA:

  • Pancreatitis symptoms got worse after the dose of Byetta was increased from 5 micrograms twice daily to 10 micrograms two times a day;
  • Twenty-one of the 30 people were hospitalized; and
  • Five of those developed serious complications, which included dehydration, kidney failure, intestinal obstruction, tissue inflammation, and abnormal buildup of fluid in the abdomen.

Twenty-two of the reports said the people improved after they stopped taking Byetta. In other cases, the symptoms returned after the person started taking the substance again. Which begs the question: Why? Why, that is, did they start taking Byetta again after going through pancreatitis which, I understand, is very painful? If I do something and it results in extreme pain, I tend not to want to do it again.

At any rate, the FDA has asked Byetta’s manufacturer, Amylin Pharmaceuticals, Inc., and it has agreed, to include information about pancreatitis in the product label’s “precautions” section.

What signs should you look for? Well, if you experience nausea, vomiting, diarrhea, indigestion, and upper abdominal discomfort, those are common side effects of Byetta.

If, however, you have unexplained, severe abdominal pain, with or without nausea and vomiting, you could have acute pancreatitis, which is potentially very serious. Call your doctor or get yourself to a hospital. However, I don’t believe you’ll need to be reminded to call the doc or get to a hospital: A friend of mine who had acute pancreatitis a few years ago said she felt like she was dying and couldn’t wait to get to the hospital.

As I said at the beginning of this blog entry, the information about Byetta and pancreatitis comes shortly after the FDA ordered the thiazolidinedione class of drugs to carry the agency’s toughest “black box” warning that the drugs are linked to an increased risk of heart failure. Brand names of the drugs affected are Avandia and Actos, as well as the combination drugs Avandamet and Avandaryl (which contain the same active ingredient that’s in Avandia) and Actoplus met and duetact (which contain the same active ingredient that’s in Actos).

According to an article by Dow Jones, “Avandia and Actos have long been shown to increase the risk of heart failure, a condition that develops over time and is characterized by the heart’s inability to properly pump blood and is different from a heart attack.”

Back in March 2000, the FDA ordered another thiazolidinedione drug, troglitazone (brand name Rezulin), to be removed from the market because it was shown to cause liver toxicity.

Personally, I’m not too concerned about Byetta, not only because I don’t take it, but because there are so few cases of pancreatitis and most of those had other contributing factors.

But it seems to me that I’m hearing more and more about drugs having adverse affects after we have basically acted as human guinea pigs for the drug companies. Remember hormone replacement therapy and its link to several conditions, including breast cancer and heart disease?

Oh, I know that clinical trials don’t last long enough to get a real picture of what could happen on a long-term basis. And it’s not just diabetes-related drugs that encounter problems after they’ve been on the market for a while. I just know that I have enough problems caring for diabetes without risking my body’s health by unquestioningly taking whatever the doctor prescribes for me.

While I also don’t take any of the thiazolidinediones either, I’m not sure I’d want to take something that raises the risk of heart problems when I already have diabetes, which in itself increases my risk of having heart problems.

What I do is ask questions—a lot of questions. And one of those questions is “is there a drug that’s been around for a while that will do the same thing?” For one thing, safety is more proven on older drugs. For another, they’re usually available in generic form (i.e., cheaper!). To me, that not only makes sense, it makes cents, too.

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Comments
  1. I had used Byetta for just a month. I had recieved the injection style pen from my doctor as a trial prescription. It had worked great for reducing my appetite. When I tried to get it through my prescription plan, I had run into a lot of rejection from my plan. I take insulin and did not know anything about the problems with it at the time. After reading the above article, I am glad I couldn’t get the prescription.

    Posted by tldell |
  2. 30 out of half a million… Hmmmm. Wonder what the chances of getting pancreatitis are if you AREN’T using Byetta? I have a friend who recently was hospitalized. Non-diabetic, she had gallstones.

    I don’t think I’d stay away from Byetta if my Dr decides to prescribe it (we have discussed it, but haven’t gotten to that point yet)

    HOWEVER, I am concerned about being a guinea pig for the drug companies. I, too, prefer to use “tried and true” meds before moving to newer versions. Like Jan said, I already have enough medical problems without adding more because of an untested (long-term) medicine!

    Posted by Ephrenia |
  3. This drug has been a miracle for me in controlling my diabetes! I went from a HbA1C of 9-10 to 6 in a couple months and I have had normal blood sugars for almost a year. I still have to watch what I eat and continue to exercise. I’ve lost 45 lbs since starting Byetta. The only caution I would give people about it is that I had to stop taking it when I had surgery in June. It slows down your intestinal movement and combined with the same type of effect from narcotics for pain I developed a paralytic ileus that quickly resolved once I was off Byetta for a couple days. As soon as everything returned to normal I was put back on Byetta and I have been fine since. I occasionally have nausea but it’s tolerable, especially since my blood sugar is so good.

    Posted by Karen |
  4. After using diferent oral medications to control my diabetes for 45 years, I was finally having trouble to maintain good control. My endocronologist started me on Byetta 5 micrograms twice dailyfor 3 months with out the desired results, but with very little side effects.He then upped to 10 micrograms twice daily. The results improved significantly, in 2 months use.I also ended up in the hospital emergency room. After different tests and blood work, I was told that I had acute pancreatitis,abdominal obstruction and kidney failure.I am now using Lantus with better results wth the exception of weight gain.

    Posted by Rodney |
  5. I have been on Byetta for almost 2 years now… It has been a wonder drug for me… You don’t know how well a drug will work for you, IF you are not willing to try it….

    Posted by Levita |
  6. I TAKE BYETTA, I HAVE NO PROBLEMS WITH IT. I HAD A NEEDLE PHOBIA AND I WAS OBESE, I HAVE LOST 20#’S IN LESS THAN A YEAR, I WILL KEPP INJECTING BYETTA, IT HAS DONE GOOD THINGS FOR ME AND I FOR ONE WILL STAY ON IT!!

    Posted by DOGMAMA |
  7. I have been on byetta for about 6 months and don’t have any of the side effects other then nausea feeling sometimes. I also have other medical problems,but hoping that this will continue to work for me. It has brought my blood level down some and as far as the weight I haven’t had any luck with that working for me. I wish, as I am obese also. Any tips would be helpful. Thanks Diana

    Posted by ladydi265 |
  8. I’ve been using Byetta for one month now and have lost about 15 pounds. I’ve had no side effects and actually feel better than ever.

    Posted by Auntdell |
  9. I look up every little thing on every new drug I have to take. I knew about the heart risk with both avandia and actos (including the small bone breakage with actos) and the byetta along with the anti-depressants I take (ie suicide risks; it’s there if you read it). People need to read up on this stuff and ask questions, no good doctor will ignore questions. I have been on byetta for over a year and am having some stomach problems which I told my internist/endo about just the other day. We discussed it and am having a blood test done and am going for an ultrasound on my stomach. I was prepared for this so I am not so concerned. If we all waited for clinical trials to finish going over every little side effect, there would be no drugs at all.

    Posted by Linda |
  10. So–you all want a tried and true Rx? It takes those of us willing to try new things for something to become tried and true.

    I’ve taken Byetta since June 2005 with good results. I am helping Byetta become tried and true so all you others holding back can reap the results of my willingness.

    Posted by Marcia |
  11. I have been taking Byetta for over a year, with only a little nausea in the beginning. The only problem for me has been low blood sugar, recently, in the evening after dinner. I take the 10mg before breakfast and before dinner. I underwent a treatment for cancer, which caused me to gain 40 lbs. Since resuming Byetta after the treatments, I have lost 15 lbs. I’ll stay with it, if my doctor can help me solve the low blood sugars.

    Posted by SMA1957 |
  12. I HAVE BEEN ON BYETTA FOR 8 MONTHS. IT HAS BEEN A MIRACLE FOR ME. AIC WENT FROM 10.5 TO 6.7 IN 3 MONTHS ON 5 MCG. WENT TO 6.0 IN NEXT 3 MONTHS ON 10 MCG. LITTLE TO NO SIDE EFFECTS. NO WEIGHT LOSS UNTIL I STOPPED ACTOS RECENTLY. BG READINGS SEEM UNAFFECTED BY STOPPING ACTOS (AGAINST MY DOC’S RECOMMENDATION) BUT ALL SEEMS WELL RIGHT NOW. I HAVE BEEN CONCERNED THAT SOME SERIUOS SIDE EFFECT WOULD ARISE WITH LONG TERM USE OF BYETTA. HOWEVER I AM NOT PANICKING OVER THE PANCREATITIS SCARE SINCE THE INCIDENTS SEEM SO LOW. LETS’ ALL HOPE NOTHING ELSE NEGATIVE DEVELOPS. THE GILA IS TO GOOD TO BE TRUE !! PRAY THAT STAYS THAT WAY !!

    Posted by JOHNBOY |
  13. I am one of the 30. My Dr. reported my case. When it happens to you, the pain is such that you will want to avoid it at all costs.

    Posted by rev. kathy |
  14. I started with Byetta 5mcg and then was increased to 10mcg BID. The drug worked great in curbing the appetite and controlling blood sugar, until recently…
    My glucose shot up, my triglycerides shot to over 1500, I had severe diarrhea, and nauseousness in the morning. I also had tingling in my upper legs and side of my head along with blurry vision. i also have tenderness in my upper abdomen. The doctor has now put me on Lantus, Humulin R, glimepride, and glucophage, inaddition to Tricor for the triglycerides. I am going for tests to see the status of my pancreas this week.

    Regretfully, no one was aware of the side effects of Byetta. I found this out after the fact. The reason youprobably haven’t heard more cases is no one knows about it yet. The message needs to be delivered and better publicized. I pray I will be okay along with everyone else.

    Posted by Shadow9 |
  15. I’ve been using Byetta for about 1 year. It’s been great for me. My A1C has been 6.7 the last 2 times I had it checked. Byetta has reduced my appetite and sometimes I do get a little nausea but other than that all is well. So far so good!

    Posted by ray of light |
  16. My husband was on Avandia for Type II diabetis for years and last year he was told to increase his dosage and one month later he developed pancreatitis. One month after that while in the hospital in the ICU and had a heart attack and died. He always took care of himself with the diabetis. I am in the process of sueing the hospital and doctors in the hospital. He was a very healthy person his whole life. I lost my husband and best friend to this drug.

    Posted by lindas66 |
  17. Our choice. I started taking Byetta in November of 2005. It was a new drug and I am ever aware that drugs reach the market with little info on long term effects. I take only my diabetic meds and an occasional aspirin when headaches or arthritus gets to the point of nausea.

    I weighed very, very carefully the possiblility of unknown long term side effects. However, diabetes is a progressive disease and a slow killer. I made a conscious decision that it was worth any risk that might crop up. I feel so much better and my A1c is now 6.2 as opposed to 9.8.

    Folks, we have a responsibility here to keep informed and to be in tune with what is going on with our bodies and make changes as necessary.

    All medications are options. Do your research, make your choice and then take responsibility for the consequences.

    Remeber, the drug companies are in it for the almighty dollar - not because they care about our health!

    Posted by Sherry in Dayton |
  18. My Father began taking this drug in Dec 2006 and passed away June 2007 with 80% of his Pancreas damaged. When looking at the box no where on it does it state that this could be a side affect nor did any one put it together that this drug could have been the cause of death.

    Posted by dm |
  19. I’ve been taking Byetta for about a year now with little to no side effects other than nausea in the beginning. Sorry to say no weight loss in my case. I take it with Glyburide/metformin. My BG has been improved with my last A1c 7.0.(down from 11). Just lately I have had some low BG in the evenings after dinner but all I need to do is eat a little something. I can always feel it coming on in time to correct it.
    All in all, even with the recent warnings I think it’s an effective drug for this disease and will continue using it. I’m sorry for those who have become ill as a possible side effect. Maybe there were other factors involved as well.
    There are risks involved with any medication and we all have to decide what is right for ourselves.

    Posted by kendon11 |
  20. It may seem to those who have not taken Byetta and developed pancreatitis, that this is much ado about nothing. Let me assure you after developing pancreatitis which led to diabetic ketoacidosis, it is not much ado about nothing. I spent 13 days in the hospital, and 8 of these days were in ICU. THIS IS A SERIOUS SIDE EFFECT.

    Alice Brusnighan

    Posted by Alice Brusnighan |
  21. I have been on Byetta for 2 yrs.No major trouble until A week ago. I suffered with severe abdominal pain for 2.5 days. Finally I looked up this web site for info. after reading some of the blogs I took myself to the emergency. After a lung x-ray, EKG, ultra sound of my gallbladder and liver, urine tests and blood tests. The blood tests came back with pancreatitis. Not a drinker, no family history of gallbladder trouble.They told me to stop the Byetta and call my Dr. which I did the next am. The nurse wouldn’t believe what I had told her. Even after I had the results faxed to her.(My Dr. was out of town) She made me go to another ER in a different city. I was put through the same blood test and EKG and after 5 hrs was told pancreatitis. By the time they got all the results the Dr’s office was closed!! Of course this was on a Friday. As of today I’m still suffering with pain on my upper left under my ribs, but much less pain. My blood sugars are rising.( I’m being very carefull of what I eat) I have yet to hear from my Dr’s office. So for now no more Byetta. I will not take it again. I do have a Dr’s appt next week. which happened to have been scheduled a long tima ago.Lucky me!

    Posted by D. Medley |
  22. I’m new to Byetta but I’m not too happy so far. I’m plagued by nausea; to the point that I’m not sure I want to continue the drug. I have been surfing around the web to see what I can find and I’m hearing more about how it can cause heart problems. Somehow it affects the hart so that it does not pump blood effectively. I have very high cholesterol and triglycerides. Untreated my cholesterol is about 1000 and my triglycerides 2500 so anything about the heart worries me. I’m going to try to continue until my next doctor’s appointment so I can discuss all this with her. But I don’t think I will continue the drug.

    Posted by Victor Johansen |
  23. I’m newly diagnosed type 2 diabetic (3 months) and had previous heart disease. My doctor wants me to first try to control it with weight loss and diet management. He sugegested trying Byetta (no other diabetic drugs) as evidence points to it helping with weight loss and BS control. I started with 5 mcg then after 3 weeks was started on 10 mcg to get better BS control. I have lost 20 lbs to date, probably because of the lack of appetite and nausea, sometimes extreme nausea. I vomited once due to the nausea. On occasion, with the nausea I also get nasal congestion (20 minutes after injecting the med) along with feeling cold even with the outside temperature in the 80-90’s. My diabetic educator (NP) said she never heard of anyone getting congestion and feeling cold with Byetta. Has anyone else experienced these additional symptoms (not listed on the package insert either)? Also, for those who experience nausea, how long did it last before you stopped feeling it enough to interupt your daily activities? I don’t always feel so bad but sometimes it’s enough to make me need to lie down for an hour or two, which is impossible with working in an office cubicle. The news today about Byetta (18 AUG 2008) has my husband suggesting strongly that I stop taking this med but I still have 40-55 lbs to lose. I don’t want to be foolish but and like others have stated, many people have taken this med successfully compared to a smaller group who have had extreme side effects. All comments are welcome.

    Posted by Connie |
  24. Dear Jan. God does not make it easy for diabetics. Here was a drug that could control BG and help you loose weight, one would think a miracle. Reading the comments it appears that pancreatis is a very serious condition. Hope that it is very infrequent with the use of this promissing drug. Again makes you wonder if insulin is the drug of choice for treating diabetes. It has all the advantages except for weight gain sometimes massive.

    Posted by CalgaryDiabetic |
  25. I’ve been using Byetta since November 2007. I lost 25 pounds in the first 40 days and and have lost another 30 pounds since. My A1c is down for 8.4 to 5.6 which I haven’t been able to do in years. Since starting Byetta I have been able to stop using Advandia and Amaryl completly just using Glucophage only along with Byetta now. For me this is a miracle drug, I’m down to a normal weight in range for my height. The only thing I have noticed is I can not eat raw veggies as much as I used to they tend to turn me off for 2 to 3 hours after injecting the Byetta. Other than that all is well!

    Posted by Karen |
  26. Ok, someone put an article in my mailbox today about Byetta. I am going to tell you my observation as a Byetta user since Sept. 2007. I am 40+ lbs lighter. In the beginning I was taking 5mg twice daily. After one month I was moved to 10mg twice daily. The nausea was unbearable some days and even now I have evening nausea after the dinner meal. If I lay down it will go away. I didn’t agree with them when starting the medication “waiting one hour” before eating. That was way to long, I shorten it waiting only 30 mins. after talking with the makers of Byetta. The nausea subsided tremendously after that. Now after nearly 1 year my BS is never above 140 after meals and less than 100 always in the morning before meals. My A1C is a remarkable 5.6 and most of the time I feel great. This is the problem. 3 weeks ago I went to ER with severe right flank pain that I was unable to control. 2 CT Scan without contrast and 1 CT Scan with contrast they aren’t sure what is wrong. They suspect my appendix. After 10 days of flagyl and levaquin my “angry appendix” is back to normal but my pain is still off and on. No kidney stones shown on CT and the doctors say they want to watch me for 2 weeks and do another CT. Geezer, I am about to get over all of this. I have been to 3 doctors and have another appointment with my GP to make a decision. I love the weight loss, my BS reading, but I am concerned about what is going on with my body. Any thoughts? As far as the right flank pain I was told by the doctors that appendix pain can refer to the back. I didn’t know that. Please let me know if anyone has experienced my story of pain. I need some answers to make my decision. Thank you!

    Posted by turncalf |
  27. Hi,
    I am a newbe in the diabetic relm. My doctor started me on Byetta a few months ago and has now moved my dose from 5 to 10. I just read about Byetta and Pancreatitis in our local paper. I am scared to death! Should I continue using Byetta or not? Is there an all natural regime I can use to control BG? My A1c is at a 6.0 from a 6.5! What is the healthy range for BG. I’m glad I’m not nauseated anymore! but these days what is the safest way to control BG? I would feel a lot better doing it the all natural way! My mom and dad have diabetes too. Mom died a few years ago and dad is struggling with his BG. He is constantly eating everything in site. I recommended to my older sister (his caregiver) to have the Dr. put him on Byetta! I hope that wasn’t a mistake on my part! What do I do?

    Posted by carlamae40 |
  28. Hi,
    I was diagnosed with type 2 diabetes in April. I started taking glucophage and then added Byetta. My doctor started me on 5 mg once per day and moved me to 10 mg twice a day about 6 weeks ago. I have learned to deal with the nausea and have adjusted my eating habits knowing what I can and cannot eat. I do have trouble eating any meat and do experience vommiting occasionally. I am losing about 1 lb per week and so far a total weight loss of 14 lbs. I am somewhat concerned about the pancreatitis side effects but will not stop byetta because of the possibilities. My doctor suspects that in 3 months he will be able to eliminate by blood pressure and cholesterol medication. That is something that would not have been possible without byetta. For me the benefits outway the risks. All medication has some risk associated with it. My AIC is the best it has been in 2 years and my cholesterol and BP is almost normal.

    Posted by storey |
  29. Don’t panic! You can get pancreatitis without taking Byetta and you can take Byetta and not get pancreatitis. The number of people who have gotten pancreatitis while taking Byetta is a very small percentage.

    The main thing is to be aware of any adverse symptoms. As it mentions in the blog, nausea, vomiting, diarrhea, indigestion, and upper abdominal discomfort are common side effects of Byetta.

    On the other hand, unexplained, severe abdominal pain, with or without nausea and vomiting, could mean you have acute pancreatitis, which is potentially very serious. Don’t keep on taking it to see if the symptoms will go away: Call your doctor or get yourself to a hospital.

    If you’re uncomfortable taking Byetta, then talk to your health care professional about alternatives. Don’t just stop taking it. Running consistently high blood glucose levels is probably a lot more dangerous than taking Byetta.

    Jan

    Posted by Jan Chait |
  30. Been using the squeeze for over a year now. It works well at reducing sugar levels. Without it I would be on insulin now.

    The only side effect I have seen is related to the gastric emptying. If I eat supper late at night, especially things like lettuce, when I go to bed I have trouble with acid reflux. If I am eating late at night I have to be careful to keep the portion size small, and avoid eating hard-to-digest foods.

    Posted by biff |
  31. I was a Byetta user until last week.Almost a year of severe pain,sickness,vomiting chest pain back pain,a lot of what is wrong with me days!!Sick, go to Dr. go to Cardi.due to bad heart and thinking that was the problem, but told no.Yes the weight loss, but not worth the sickness’s.After reading in the paper about the pancreatitus it all made sense AND scared the hell out of me.I am now being tested, so far not so good,on antibiotics,and waiting for more test results and Dr. Follow up visits.

    Posted by Ruth F. |
  32. To Connie, You mentioned congestion 20 min after injection and feeling cold. You are the only person besides me who ever has said this. I asked the endo about it and he said he hadn’t heard this. I have been on Byetta for probably around 2 years. I started with the 5 and lost about 25 lbs over about a year, and started to plateau and went to the 10 and lost about 10 more. My A1C is 5.5, which had been 9.5 originally with the diabetes diagnosis. In the beginning of the 5 and the beginning of the 10, I experienced the coldness. I am back on the 5, as after about 6 mos on the 10, I guess my weight kept going down and the 10 had started to have too much nausea effect on me, and so I went back to the 5 and am happy with it. I no longer experience the congestion or coldness, but then, again, it is summer, and hotter. I expect that this winter, I will be colder, but not probably like I was with the Byetta cold. I do understand exactly how you felt. I had more of a runny nose than congestion, and think it was a reaction to the liquid they use to suspend the Byetta. I am really over that now for sure. I feel this drug has really been a miracle for me and hope that nothing terrible develops for me, and they keep it on the market.

    Posted by mj |
  33. I have been on Byette since it was released and After first reading about Byette and this new threat of pancreatitis as a side affect, I stopped Byetta in November 2007. I then tasked the physician with finding a MED that would work. Well after 6 months of playing around having many HIGHS and many LOWS, I finally listened to my body and went back to Byette! A1C dropped dramatically, weight gained by taking ACTOS is gone.

    I recommend every person LISTEN TO THEIR OWN BODY. For me Byette works well and I plan to continue the use. My fears have subsided because I feel much better then on the other drugs.

    Posted by clarajane |
  34. As I posted in 2007, I lost 15+ pounds taking Byetta after gaining 40 pounds with a cancer treatment. I continued to take it even though I was very nauseated at first. It eventually went away, BUT, I’ve had four different kinds of cancer prior to taking Byetta. My endo had prescribed Avandia for me for my diabetes. My husband was very concerned after reading about some side-effects, so I spoke to my doctor about going off Avandia. He poo-poo-ed any concerns I had, saying it was a very small trial and I should ignore the negative reports and to continue taking the Avandia. Well guess what? Even though I have excellent blood pressure and cholesterol levels, I had a heart attack and underwent quadruple heart by-pass two days after Christmas, 2007. Needless to say, I quit taking Avandia, much to my doc’s objections. He was still saying it was a small trial.

    Now I hear this about Byetta! I had been doing well with lower BG levels with only Byetta and Metformin/Glucovance. THEN the doc took away the Metformin/Glucovance and added Novolog and Lantus injections along with continuing Byetta. Ever since, I have been struggling with weight, hunger, and extremely low blood sugar every evening about two hours after dinner. So far I’ve been able to feel it dropping and am able to eat or drink something to bring it back up.

    Like so many of you, I am so leery about some of these new treatments. I see my doc next week and I am going to review all these meds and the problems I am experiencing. I feel for any of you or your family members who have exerienced bad effects with this medication. My father worked in the shipyards in the 1940’s and, unknown to the workers, the asbestos that was sprayed all over the work area was going to kill many of them. My father, who had always been very healthy, died of it in 1983,40 years after exposure. And now, because my dad came home with the asbestos on his clothes and his clothes were washed with our clothes, I have evidence of asbestos exposure in my lungs…60 years later. So heed the warnings and proceed with much care and knowledge.

    Posted by SMA1957 |
  35. I was diagnosed with diabetes about 4-5 months ago. I have been on glucophage for several years trying to hold off the diabetes. When diagnosed, my doctor asked if I was willing to try the Byetta. After agreeing, he put me on 5mg twice a day. I have been taking it with no side effects, not even the nausia. I have lost around 35 pounds since beginning the drug. I do continue to watch what I eat. My BG level stays around 95-100 most of the time. My weight loss has really slowed down at this point. My doctor has just given me a prescription for 10 mg to see if we can get the weight down a good bit more. I still have around 55 lbs to go. I couldn’t be more pleased with the result from the Byetta. I will continue to take it and pray I don’t get side-effects with the increased dosage. If so, I will return to 5mg. I do however feel lucky to be educated about the possible Pancreatitis and the symptoms, so that I can look for them. I am very sorry for the people this happened to with no warning. I am a definite advocate for Byetta in my particular case. It has been a God send for me. I am feeling better every day than I have in a number of years.

    Posted by Donna |
  36. My father has been taken byetta 3years now. At first he did lose weight. His ACI are great now. His blood sugar are ok. It drops around 50 atleast 4 times a week. He takes Latus 100units twice aday. Novolog 85units 80units 85units 3times aday. and the byetta(25mg)twice aday. But last week is triglycerides were over 564.

    Posted by sharon |
  37. I have been taking Byetta since June 2005, right after it came out. I was on the 5 mcg for a while (can’t remember exactly), then up to 10. I had slight nausea one day, which might actually have been motion sickness as we were driving a windy mountain road. Some dramamine type stuff took care of it. I did lose weight nicely, and my numbers were good. After a while my A1C did come up, and my provider (she is a NP and CDE who has a primary care practice) added oral meds.
    I have had a series of intestinal stuff (IBS which I had a long hx of) and some upper abdominal pain. We did consider that the discomfort might have been related to the Byetta, but I really didn’t think so. I had some flu stuff twice last winter with nausea and some vomiting (mostly dry heaves), and the second time, in March, I ended up going to the ER with shoulder and chest pain. No evidence of heart problem, which was what I thought. I had an abdominal ultrasound that week (already scheduled due to the abdominal pain), and all was normal. I occasional have the discomfort (feels like indigestion, Tums and Gas EX usually take care of it), and sometimes don’t feel like eating much. I have lost about 30 LB since last September (I had been higher before I started the Byetta).
    I did not hear about the pancreatitis risk until I read it on this site after August 18. I didn’t think of checking on the web about Byetta after I had been taking it so long. I now take it 10 mcg 2x day, along with Amaryl in AM and Janumet in AM & PM. There have been occasional periods when my numbers have been up due to illness or medication, and we have added additional metformin. At my last appointment my labs (cholesterol and triglycerides, kidney tests, etc) were great. I am not due for an A1C until next appointment.
    I don’t know how typical this experience is but maybe it will help someone.

    Posted by jmouse41 |
  38. Over a year ago, I was the first patient to try Byetta in my Endo’s office. Started with 5-moved to 10 twice a day. It was presented to me as a miracle for us diabetics who have a stubborn metabolism, & have gained weight on Actos, & other diabetic drugs. My Ac1 went down, & I was all excited to start losing weight…only 20lbs., & then it stopped. I live on antacids, & have the awful nausea, and many other abdominal, & gastric symptoms off and on. I’m also on Metformin & Glyburide, & now my Ac1 is slowly creeping up.
    Been having some pain in my upper left side, & now I’m wondering, since this is the first I’ve heard about the pancreatitis thing. I don’t know about anyone else, but I’m getting sick & tired of feeling put down by the naturally thin, & lean ‘naturalists’ who claim I could get over diabetes if I lost 50-100lbs., and become an athlete, and the doctors who assure us that the drugs they push are safe & effective for us!

    Posted by Gloria |
  39. I appreciate your blog, thank you. I take actos, and have never ever, even by my own doctor; been told that it causes heart failure. I ask my doctor about any and every medication he prescribes for me: but not at any time of me having asked about actos, was I told by him, that it could cause heart failure, a risk to my life. Is there anything that can be done about your personal doctors not telling you the truth about medicines, especially when you ask them, and they know you want the truth. I do not feel that it is right for a doctor to lie to you, especially when he knows, you will not take the medicine, if you know the truth. Again thanks for your blog. Irma Richardson

    Posted by Irma Richardson |
  40. Hi Irma

    You can get information on your own by asking your pharmcist to give you a copy of the patient information for any medication you take — or you can go to , key in the name of the medication, and get information that way. Remember, however, that the number of people who had problems were a very tiny part of those who take it on a regular basis.

    Jan

    Posted by Jan Chait |
  41. I was on Byetta for 3 months last year. I had done some research but when I started in July the info about pancreatitis had not yet come out.

    As the weight loss and lower BS was an attraction I decided to accept my doctor’s offer and go with it.

    Yes, I lost weight, no it didn’t reduce my blood sugar and in the end the doctor had to take me off it because I was in so much pain. Although off it, the pain did not improve and just got worse until, in January my digestion completely collapsed.

    It was only by adopting a gluten and dairy-free diet that it has started to recover. I do believe that if I had remained on the Byetta, the damage would have proved to have been Pancreatitis and I would have been a lot worse off.

    My doctor, who by his own admission, knew little about Byetta, should never have given it to me as I was already on insulin. For those whose predominant problem is insulin resistance, not lack of insulin production, it will probably work ok, for those who produce little or no insulin it will not work at all.

    Had I been party to that information I would never have taken it and would not have had to go through more than a year of hell.

    Posted by AliB |
  42. I have been on Byetta for about 6 months and have had some side effects including pain in my back but so far nothing severe but now i am worried about this pancreatis thing. I had pancreatis in 2002 and it took 6 months of the most horrible pain for anyone to figure out what was wrong with me. My pain started in my upper back between my shoulders and i would fill like i was on fire. I also had alot of vomiting. My ribs hurt so bad that I wanted to die and even considered suicide to stop the pain so if anyone has any pain like this go to a hospital and make them do a blood test and check everything. I almost died my enzemes in my pancreas were over 70,000 and I am lucky to still be here, I also had my gallbladder removed and my liver was infected. I had to have a tube put it my chest for 3 months and it is just horrible and this was without taking any type of medicine that this happened to me so if byetta can cause this I am very worried and everyone else should be to because this pain is unlike anything you will ever experience in your life so I hope everyone stays safe and get tested every other month.

    Posted by angie |
  43. Angie, if it were me, I would remind my doctor that I have had pancreatitis, call the doc’s attention to the information about Byetta and pancreatitis and have a discussion about whether or not you should continue on Byetta or if there is alternative medication you should be taking instead.

    Don’t ever hesitate to question. I am reminded of the time I was in the hospital and a doc was about to run an IV antibiotic on me. I asked what was in it and was told penicillin. I’m allergic to penicillin. Had I not questioned what was in the IV, I could have been in big trouble!

    Jan

    Posted by Jan Chait |
  44. I have been on metformin for a few years now. Was also doing Gliburide, but felt sick all the time and being overweight already, couldn’t deal with the weight gain from the gliburide. Had A1C of 8.3 this past Summer when I went of gliburide and added Januvia to the metforman. Now have an A1C of 10.4. Doctor is pussing Byetta (won’t use Actos or that class of drugs due to cardiac concerns).

    I’m extremely needle phobic. I’ve had the Byetta patient education information, including samples of the needles, but am still freaking out over the idea of sticking a needle into my skin. Also am very concerned about the pancreatitis as I do have elevated triglicerides and will be starting a new med for that too. Have high BP and cholesterol however they are under control with meds.

    What other options are there for me? I won’t do insulin, can’t begin to even imagine using those needles.

    Is Byetta the safest choice right now?

    Posted by Karolynn |
  45. Well I’m back with an update. My last blog was on Aug. 19 just after I started 5ml of Byetta. after a few months my doctor bumped me up to 10ml of Byetta twice a day. OK I lost 25 lbs but every day I was sick with aweful bloating in my stomach and had heartburn too. Dr. moved me back to 5ml but insurance wouldn’t ok it until the Dr. contacted him, which I guess she didn’t because it hasn’t been approved and Dr hasn’t returned my phone calls yet. I took myself down to 10ml once a day for a month and still got aweful bloating. It felt like my stomach was going to explode! So I stopped all Byetta and now 2 months later I am feeling better. my A1C is a 5.5, Colost. 146 and bloodpressure is good. I am trying to control my blood sugar with a low sugar diet. Some days are better than others but I think I’m doing good. I am now looking for a new Dr.

    Posted by carlamae40 |
  46. I have been on metformin for 4 years. After being placed on a steroid medication for ongoing sinusitis, my cholesterol became out of control and my triglycerides were 314. My Endo put me on Byetta 5 mg. then 10 mg. two times daily and I have experienced rapid results. I tend to have a bad reaction to pizza and can no longer tolerate coffee, but no real nausea to speak of. The needles are so tiny that the pain of receiving the shot is no more painful than testing my glucose levels. I am never hungry which is a great response, since I am German and love to eat. I now find myself making healthy meal choices and even not eating fatty foods. I love the reaction that I have been experiencing with Byetta, I no longer feel like I am dieting. I just keep a closer eye on my carb count and the medicine does the rest.

    Posted by Pamela |
  47. Have been on Byetta among other drugs for diabetes since Aug 05. Have lost 70 lbs. Byetta alone was not enough to bring sugars under control.

    Posted by sujoly |
  48. age 54, found out that i was diabetic in june 2000 . took only glucophage off and on for the first 6 years, quit being so active a couple of years ago and my diabetes has gradually gotten worse. quit taking the glucophage because of it causing me heart problems, cleard up immediately after i quit taking the drug. the doctor gave me glyburide and then actos, at first the gly. worked well, but soon faded, then he added the actos. took for maybe two weeks but stopped after unusual pain and mild illness. a few months ago because of lack of sugar control i started to take the actos again,for about two months,then quit again because of negative body feelings, in early jan. of this year 2009, i was diagnosed with barrett’s syndrome, the pain was huge and robs me of my sleep. doctor gave me cimetidine which helped some, but there was something else wrong and on march 21 had to go emergency room for extreme pain in abdomen without vomiting. hours and tests later i was diagnosed with pancreatitis. no family history,no booze,trauma etc.. . have appt. the 13 of april and should find out that they do not know the cause. after doing research on the internet, i know now what probably caused my pancreatits,it is the pills they give you for diabetes. they all help contribute,actos may be amoung the worse and is probably the main cause with all the other one’s softening me up. i hav equit all the pills except tylenol/codeine. the pain is horrible and have been in pain for almost three months straight. now that i know the cause, hopefully complete abstinence of all pills will return my pancreas to normal, i will stick to lantus as it is 100% pure and natural. i knew my body hated chemicals but this is way too hard of a way to confirm this. good luck my fellow pain pals. randy

    Posted by randy |
  49. I have been use Byetta for two week everything was fine..and now I have noticed that I have build in my stomach a mass the zise or orange and its warm….I dont have any other side effectss..what can I do?
    thanks…

    Posted by Samara |
  50. Jan,
    I am 61 and have diabetes. My father and aunt had it very bad. Dad died from complications of it.
    I have been diagnosed with it for over 10 years. I was given metformin for 7-8 yrs and seemed to be doing OK with BS. However I had such problems with my colon as I have colitus. It got to the point I had to carry wipes and know where the bathroom was at all times. Many accidents too. Then had Actos added. Bad news! I ended up in the ER twice in two days while out of state! Really bad experience. Got home and went to DR and he said “oh that is a side effect of the metformin and all the water retention and swollen ankels are from the Actos. The heart can’t deal with it”. I thought I was dying! So then he put me on Amaryl and then a year later on Januvia. That went well until my A1C went from 6 to 8. He then added Byetta. Started with disabilatating nausa for a week so he gave me Fentigrin (sp) and then I sat on the couch for a week and drulled on myself. I have gone from colon dumping to constapation! From 10 BMs a day to none for 4 days! I feel bloated! The nausa went away and he then wanted me to up the Byetta from 5 mcg to 10 mcg. That was 3 days ago. So far the only thing is the lack of stool! Every once in a while I feel slight nausa but the weight loss (12# in first month) was great! My sugars have come down to an average of 150-160 from over 200. My cholesterol is extremely low at 56 hdl and 23 ldl. He is more worried about that than the nausa. All in all, never take metformin or Actos! Terrible stuff! Jury is still out on Byetta. I agree, we are all different and the only way to find out what works for you is to try it. Weigh the risks and if you feel like the only way to keep going is to take something to balance your BG, then see how it goes. There are thousands of dedicated people who work in research to help us live good lives and we need to help with the testing as how do you get ‘tried and true’ drugs without someone taking them?
    Jack

    Posted by Jack |
  51. Almost fifteen years on progressive oral meds, now two AC1 results over 9, and I start Byetta tomorrow. Glad I read this site so I can separate the typical side effects from pancreatitis.

    It strikes me that many commenters here completely miss the point that what ails diabetics is either caused by and/or badly impacts the…

    PANCREAS!

    http://en.wikipedia.org/wiki/Pancreas

    The second entry under “Pancreatic Disease” is Type II Diabetes…

    http://en.wikipedia.org/wiki/Pancreatic_disease

    For my part, I am planning on living forever. If I ever get sick or old, it will certainly be the fault of the medical and pharmaceutical professions. Maybe the insurance company too.

    Posted by Bob |
  52. I started taking Byetta 2 months ago. I am waiting to get my A1C results back from the doctor. I can’t wait to see if it is really working at bringing that down. I know my readings are hardly over 110 all the time. I LOVE BYETTA. I lost 9 lbs in a week and I am looking forward to losing more. My primary doctor would only tell me I had to have gastric bypass surgery. I’m not a fan of that surgery and don’t want to have it. Byetta will hopefully be my gastric bypass surgery without going under the knife. I personnally have had almost every side effect they list on the papers from the pharmacy. But the nausea was the worst. I found if you take a few bites of food and then take the injection and continue eating, you don’t have the nausea. Also, stay away from pizza, they don’t mix too good. I get tummy aches when I eat pizza. But now I know and can stay away from it.

    Don’t let the pancriatic stuff get in your way of trying a drug that is wonderful. if you don’t have a problem now, you shouldn’t later. If it is meant to be it will be. Now I have 180 lbs to lose and some diabetes to get rid of. LOL

    Posted by Kim |
  53. I am 42 and was diagnosed with diabetes 11 years ago. My former, idiot, doctor did not see the symptoms as far back as age 22. I don’t know if I am a rare case so I thought I would post. At diagnoses I weighed 140lbs. Meds worked right away but within 3 or 4 years my blood sugars went back up. New meds were added, and combinations tried. With watching my diet and some exercise I managed to get my weight down to 210lbs. This helped my blood sugars but only to a small degree. Just a little stray from a strict diet and my sugars were running 300-400 even with all the meds. I got busy exercising and started to loose more weight. I felt great but my blood sugars still ran 200-300 on average. Rarely did I see numbers below 200, which was my goal at the time. I got down to 185lbs. “They lied to me”, I thought. 185lbs is a respectable weight for a “big boned” guy. Still my blood sugars were in the 200-300 range. At times my blood sugars spiked to 300-500 range and I started to get worried. My mother died, depression set in, and I stopped exercising. At the same time the doctor decided to put my on insulin. I was like a balloon. Back up to 240lbs in 8 months. I decided, on my own, to take as much insulin as it took to regulate my blood sugars. I was taking 300+ units (a boat-load) of Novolog and 92 units of Lantus. Success at last. I had numbers that ranged from 45-250 but very few in the extremes. I had a formula that worked. The problem is that now I don’t feel good like I did when I was 185lbs. I just visited the doctor again and he said 2 things to me. Byetta and bariatric surgery. I started taking Byetta (a previous drug that had been tried and stopped prior to insulin) on Monday 7/6. Today, 7/7, I took only 73 units of Novolog and have normal blood sugars (70-110). Is this going to be the thing that works? And, for how long?

    Posted by Dennis Smith |
  54. i have been taking this drug since it came out on the market and have not had one problem with it and it has done me a lot of good. i have losed over 100 lb with the help of this drug and i sure in the hell hope they dont take it off the market cause it is keeping me alive right now. thank you very much=:)

    Posted by Rebamay |
  55. Well I guess you can add me to the 30. Interestingly, my problem seems to happen when increasing the dosage from 5 mcg to 10 mcg 2x day. The first time, it made me really nauseous for about 3 days, I vomited and it seemed to go away, but I had quit taking byetta at all. Recently that familiar pain high in the abdomen, this time with fever. CT revealed inflammation and likely beginnings of pancreatitis. Dr’s orders to stop byetta. On 5 mcg, with Avandment and Glimepride, my blood sugars seemed to be under control running in the normal range 90% of the time. I think the byetta was helping control the sugars. I find it interesting that another user posted here that the change in dosage afftected them as well. I’m thankful I don’t have full blown pancreatitis…yet. It seems that some people tolerate it well. I can’t say at this point whether I would or wouldn’t take it again. We’ll have to see what the GI doc has to say.

    Posted by Mark |
  56. I took Byetta briefly at 5 mcg with little to no problems; after I switched to the 10 mcg dose I could literally feel an effect on my heart after going to bed one night. I have since read online that several cardiac events that caught researchers’ attention re: Byetta and cardiac issues ensued quickly after a switch to the 10 mcg dose. I had already considered taking myself off Byetta after a warning from my naturopath in San Francisco about Byetta having been found to affect the heart. That gave me some concern because I had not had a good experience with/reaction to two different beta blockers I had used in the past: Metropolol for six months at full dose and half dose for another six months after stenting but before triple bypass, and immediately after bypass during hospitalization, I learned that a different beta blocker, Atenolol, was WAY slowing down my post-bypass recovery in the hospital — every time I took it I felt like I’d been hit by a Mack truck. I concluded that I did not want to EVER take anything that acts as a beta blocker again because beta blockers (and statins, BTW) impair your liver’s production of CoQ10, an important nutrient for heart action at the cellular level (along with four other items: oxygen, L-carnitine, d-ribose and magnesium, per Dr. Stephen Sinatra). In addition, beta blockers have been implicated in slow induction of heart failure (which happens at the cellular level, per Dr. Sinatra, by virtue of said deprivation). The theory behind their use is that they desensitize your heart’s norepinephrine receptors to your body’s own adrenalin/cortisol — which is supposedly beneficial to your heart because it supposedly STRENGTHENS the heartbeat and cardiac output, but I suspect from my own reading/research and experience that just the opposite may be the case. In addition, if you have high triglyceride issues as a primary problem, as I do, guess where all that fat settles if your heart gets slowed down? That’s what I believe I observed between my first stenting and bypass while looking at the lovely angiograms they showed me; I was the only one who was asking the very obvious question: where the heck did all those little flecks of fat come from in that year and a half interval? At any rate, imagine my surprise when I learned that Byetta is a CARDIO-SPECIFIC beta blocker…I think the comment that someone in the blog made about the Byetta being more beneficial the more insulin production you still retain is a salient point. Perhaps if your own system is still largely functional there are less side effects from the introduced item. Some doctors believe that Byetta actually restores your pancreatic beta cells. I don’t know what to believe about that at this point; I think it’s more likely it only spares them, which insulin will also do if you start it soon enough, according to Dr. Richard Bernstein, the first proponent of the individual/portable glucometer — who, incidentally, is in communication with some researchers who may have found the killer cell responsible for diabetes and hope to collaborate with him in selectively targeting the killer cell for destruction in order to effect a cure. What I am doing for now is trying to use an adequate (high?) protein diet, severely limiting my carbs and gradually increasing my exercise (to cardiac tolerance per measurements during cardiac rehab exercise at a nearby hospital), supporting my health with a few pharmies (aspirin, Plavix because I have actively exposed stents from a post-bypass stenting, Diovan, Welchol — a fat/carb grabber). I am considering Tricor (although I’d like to avoid it), as well as consulting with my naturopath again, who has reversed about 15 cases of both types of diabetes in both young and middle-aged patients by balancing pancreas, liver and adrenal functions/hormones. I’m not pleased with my current blood sugars, and I am looking at using raw vegetable juices (low-carb) and more fish in my diet. I have a rare familial Type III dyslipidemia (”broad beta” disease) that is arguably my primary problem, but insulin resistance and early prediabetes are in that picture, as well. I intend to check out Drs. Kane and Malloy at UCSF Research clinic. I use Dr. Joseph Prendergast’s L-arginine approach to help keep my arteries clear, and I will be using DeToxMax Plus (oral chelation) per Dr. Sinatra. I have just finished a 35-session run of Enhanced External Counterpulsation Therapy to develop new arteries in my heart, which the L-arginine should help to keep open. Based on something I learned from an online person based in Sweden, I took a chance on a high sat-fat diet to see what the effect on my triglycerides would be (my cholesterol follows my trigs up and down), and my HDL jumped and my trigs and total/LDL numbers improved, along with my hs-CRP. The reason for this is what my VAP panel (lipids) revealed: that I am a Type III dyslipidemic. However, after an initial dramatic weight loss, I have gained, while learning that my TOTAL caloric intake, as well as the balance between protein, fat and carbs, and the spacing of my meals, and exercise at an optimal level, makes a big difference in my weight gain or loss. It’s a real balancing act, but I think I may be able to lose the weight very slowly without using more pharmies. Definitely the liver plays a part in this: if your blood glucose is too high because the liver over-produces glucose, you simply don’t burn the fat, apparently — increasing your exercise, if you can, CAN help but I can see limitations in that area in my own case. I weigh daily and I try to keep track of what I am eating (unfortunately, the internal variables seem to vary day to day) and what my blood sugar is doing. I am on standing labs for lipids, etc., in order to determine what is working and what isn’t. I intend to use herbs, vitamins, minerals, other food supplements, and anything else I can find to stay off the pharmies and, hopefully, gradually reverse this — if that’s indeed doable. I use a CPAP every night to keep my cortisol levels down (still have some oxygen blockage from the last event, not sure if or how much actual muscle damage occurred — reversible, according to an Oregon woman, at 18 grams vitamin C per day, and supported by research on mice), so I’m endeavoring to do that, as well). I have recently started on a low dose of natural thyroid to see if there is some help there (most docs won’t put you on thyroid if you’re post-bypass, though — and I’m not convinced they’re correct in that). There is a man in Colorado, Thomas Smith, on the internet who has reversed his own (early) Type II DM by reestablishing blood sugar control (he terms it the BSCS, blood sugar control system), but he allows himself sweet treats very rarely; he implicates the high use of omega 6 and 9 oils in our American diet, as well as high use of sugar and refined flours. The doc who wrote The Edge Effect makes a very good case for brain hormone deficiencies playing a part in chronic age-related disease, including DM2. Cortisol probably also plays a part due to its interaction with insulin/blood sugar.

    -SWilson

    Posted by SWilson |
  57. I have been taking Byetta for about 1 1/2 yrs., I have not lost much wt. maybe 15 lbs. total. I don’t have a real problem with taking the Byetta but I would like to know if you can just stop taking the medicene? What will happen ?

    Posted by Mike Tomlinson |
  58. I have taken byetta for 3 years with no adverse reaction or problems. One of the best things about taking byetta is the weight lose in the first year I lost 45 pounds and about 20 after that.Every time that there is a medicine that has done more good then harm they want to pull it off the market compare the numbers do the math. I have also taken avandia since it first came out and I have had no problems . I see the doctor every three months and have regular blood work to make sure everyting is okay. I would have to say talk to your doctor ask question evet time I have my hc1 blood levels checked evey 3 months they are around 7.1 or better since I have been on byetta.

    Posted by sue kuhn |
  59. I am going to speculate that the incidence rate is under reported. I happen to be 1 of 5 patients in my physician group practice that aquired pancreatitis using Bietta. That is out of a total of 25 patients on Bietta. I do not drink, use drugs and my tryglycerides are all within normal limits. I was ruled out for gallbladder stones and other diseases. I have been using Bietta for over a year. I too had weight loss and normal A1C.

    I ended up in the hospital and I did have an enlarged pancreas. I was unable to eat without emesis. I had significant mid-epigastric pain radiating to my back. It took me 2 weeks to be able to eat a normal diet. Although I was happy with the results of Bietta till this point I do not want to end up with an injury to my pancreas or other disease process. 5 out of 25 of us have experience pancreatitis.

    Posted by uldrich |
  60. I have been taking Byetta for about 2 yars. I have no side effects such as vomiting etc. I do have excess fat around my stomach now. I have lost about 45 lbs. my psorisis is worse.

    Posted by Sharon |
  61. I have taken byetta for about 2 years, 5mg and though I lost may 15lbs. it worked great on my sugar. Now the bad news………Over the past 6 months my kidneys have started to fail. That news came out of the clear blue sky. I stopped the byetta about 1 month ago, gained back all the wt., see a nephrologist and now take lantus. Byetta worked buy keep a really close eye on your kidneys.

    Posted by jeannette kern |
  62. i have been using byetta for almost 2 years and have had great success with it …it has helped me control my weight and my A1C readings are in the 6-7 range and my sugar has been controlled…i also take metformin as well as 1 shot of lantus at bedtime …i have blood work done every 90 days and in addition to my edocrinologist i also see a cardiologist and an internist on a regular basis cross monitoring my situation …incidently although i am obese my triglycerides from my last series of blood work done in march of 2010 were 67 and my cholesterol was 124 with the “good” and “bad” cholesterol all within acceptable normal limits…further my kidney and liver functions are all within normal levels …so i guess i am one of the lucky ones as far as taking byetta is concerned

    Posted by art saltzman |
  63. I was recently put on byetta . The 5 was ok made me a bit sick but not bad . Did not loose much weight . My dr put me on ten raising the dose . It made my back hurt so much . I still am not sure if its kidney pain or what . All my dr said was stop the meds . Now I wake every night in desperate pain in the back . I get queezy feeling and bloated still . I just stopped the meds after being two months on the 5 pen and one month on the ten . I am scared and do not know the cause of the bad lower back pain bi lateral . Both sides of the back and stomach pain .
    Will the side effects go away completely ? What now ? My dr wants me on another similar pen and I am scared the side effects are worse then the diabetes . In the few months I only lost about ten pounds and my blood sugar went from 280 to 150. It gave me tremendous heart burn too .How do I get my back pain to go away ?

    Posted by Judy |
  64. I started Byetta in January 2006 after many years of trying many pills. Started with 5 and after two weeks went to 10 twice a day in addition to Metformin and Actos. Was very ill from the moment I started. Threw up all the time.I was in bed for one week not able to eat anyting but rice cakes and strawberries. Drinking anything was a problem.I lost 40 lbs. in two and a half months which I have kept off for these four years. I became very sensitive to smells. This nearly drove me crazy. Everywhere I went odors would make me sick. I had early on, several spells of severve stomach pain that when through to my back. At the time I did not know what this was. I now know I was problaly having pancreatisis.
    After about four months the throwing up was reduced to spells every three weeks or so. But I still remained nauseated a lot. The scents still bothered me. My blood sugar levels dropped immediately. Prior to Byetta I ran 200 to 250 all the time with A1C running in the 9’s.
    After Byetta my blood sugars run 100 to 115 with A1C running 5.5 to 6.0.
    I too, have a problem with being cold when it is not resonable to be cold. I live in the South and have found myself wrapped in blankets in 100degree weather.
    I have been diagnosed with gastroparesis, which exacerbates the problem with the slow stomach emptying.
    But all in all I have been willing to deal with the side effects in order to keep the blood sugars under control.
    Now lately I have been having a nagging ache in my lower back and I am starting to worry about my kidneys. I go to the doctor next week and will ask about this. Hope the news will be good.

    Posted by wanda |
  65. I took Byetta from May 05 to 2/09 and I felt great. My BS was good and I really felt good. My Blood sugars were 87 in am and less than 150 all the time. I started having pain in my abdomen in Feb 09 and dr suggested that I come off Byetta until they figured out the problem. They took out my gall bladder but I still had the problems with loose bowels and terrible abdominal pain. Then my doctor took me off Metformin and my loose bowels and pain went away. Now my doctor wants me to go back on Byetta, but after reading these posts, I am very scared that the problem I was having was associated to the Byetta afterall. I will again speak to my doctor about my fears.

    Posted by Sherian Carlson |
  66. i have been on Byetta since 6-2005 and had about nine months ao severe nausea,and lost at least 45ilb. I have started having abdominal pain constantly along with heartburn and uncontrollableshivers and being cold. i am having cat scans and endoscopy and fear I may have pancreatis. hearing about the cold others feel may be from byetta it works great but I amconcerned. keep your messages coming it may help someone from being a victim of pancreatitis.

    Posted by Shirley |
  67. Jan 2010 started taking Victoza for uncontrollable BG after having taken steroids for pnuemonia. It’s the best thing that ever happen to me as far as total control. I do 1.2 in the evening. I have dropped 75lbs. and was a 9.6 and now for months consistly in the 4.6-4.8 range. I have recommended this to everyone I know that has type II>

    Posted by JanetK |
  68. A little background:
    I’ve been on Byetta since 2006. My experience does not include pancreatitis. I used the 5’s for several years, lost weight but experienced significant gastro side effects and headaches when I started so did not increased until 2009. My BS started to creep up so I decided to try a 10 in the AM and stick with 5’s before dinner. I’m a planner and knew I’d probably be sick so I waited until summer break, I teach to increase the dose. The AM 10 worked well, additional weight loss, improved control of BS several months later I’d become increasingly sensitive to various foods in particular lactose intolerance. I attributed my food sensitivities to aging or allergies. After about 10 months I started having sudden severe vomiting incidents at home and at school - imagine running down the hall with a waste basket with students present. Weight loss was accelerating, a good thing. However, my Doc. pointed out these were Byetta side effects so I went back to straight 5’s.

    Now, the reason I’m posting:
    I have had a familiar Byetta headache for at least 2 months and experienced that sudden severe vomiting of yore. Have any of you long term users experienced increase side effects over the course of your treatment? I don’t want to go off Byetta because it has been a miracle drug for me but I can’t work if I’m vomiting like this.

    Posted by AliceB |
  69. I was a good patient. Hung in there through constant nausea as my Byetta was increased to therapeutic dose. Other than the nausea and that’s no way to live) all went well. Then major abdominal pain put me in bed for several days and finally went to ER. I had never had any internal problems, only GERD. No drugs or ETOH. Only medications prescribed for health maintenance.
    Pancreatitis was diagnosed but I was sent home to to the late hour. I drove myself back to ER the next day. Admitted for a week. Treatment is no food and major IV pain medications. It was suggested that taking my gallbladder would make me feel better. Discharged from hospital and told to resume all medications. Took one inj of Byetta then began to look up info on ALL my medications. Obviously the hospitalist or any other MD taking my case in the hospital didn’t have a clue. I dropped Byetta like a hot potato!!!
    Acute pancreatitis is extremely painful (reference pain threshold: I have had 3 babies at home!)
    I now live a life of some underlying fear that something will go wrong with my pancreas in the future. Eventually I did have my gallbladder removed. Pathology on it showed it to be healthy. Not fatty or stones. But now I have a life of lots of nausea and avoid anything fried or with oil like a snake!
    Take Janumet now and hope no side effects show up with it at a later date. Very thin now since I can’t eat much or often (hey but I look sexy in my bikinis in Hawaii!)
    I have a A1C of 5.3!
    Through all if this I forgot to mention I am a nurse practitioner. Had heard lots of info from Byetta reps but when I had a problem they acted like it was never seen in trials!
    If a lawyer would take the case I would sue. It’s one thing to switch meds because something doesn’t work for you but quite another to harm a patient’s pancreas and run up expensive hospital bills. More people need to know about the possible effects of this drug. For those happy on it, great! But should you have major upper abdominal pain, get to a hospital, have a CT scan and labs run. If you have increased enzymes stop the drug immediately and see your Health Care provider ASAP. And remember, if you are suffering from pancreatitis, the pain and enzyme levels will go down gradually. It doesn’t happen immediately. Eating will cause you more pain so try to stick with a liquid diet for several days.

    Posted by Helen |
  70. I have taken Byetta for over 4 years with only a few lower abdominal pain issues. I believe they were due to eating to much before my injection.
    I lost 100 lbs and feel great.

    A few weeks ago my blood sugars dropped into the 40’s for a few days just in the morning and I was advised by my doctor to stop take it and monitor my sugar levels. They have been running OK for now. I am only taking metformin for my diabetes. I did gain 20 lbs back but it was Thanksgiving and I can certainly notice I have a bigger appetite without the Byetta.

    It looks like Byetta isn’t for everyone but it has been a life saver for me.

    Posted by Coy |
  71. My father was started on Byetta in the fall of 2009 and developed all the symptoms of the drug. He was rushed to the hospital in early November 2009 and diagnosed with acute Pancreatitis and extreme pain. Was told in the ER that he would be admitted and go home in about 3 days or so. Fluid was drained from his pancreas which had already started to poison his system. To make a long story short, his kidneys started failing, he was put on slow dyalisis several times a day and he passed away in the hospital on December 19. He turned 73 while lying in his hospital bed. Prior to starting Byetta he was a pretty normal and healthy man. We actually had all met for a family dinner at Red Lobster just a week or so before he was rushed to the hospital. The only change in his routine was the addition of the Byetta and I know without a shadow of a doubt that is what took him from us! Please pay attention to what you body is telling you. When his symptoms started…. nausea, vomiting, diarrhea, indigestion, and upper abdominal discomfort…. (Yes, he had all the symptoms)…. the doctor’s told him that was to be expected when starting a new medication. Because of this my dad kept trying to push through with the Byetta. Let me tell you, when a loved one is taken from you prematurely, it does not matter if they are one of the few!

    Posted by Richard Brown |

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