August 01, 2005

Byetta 2: August, 2005

This is the sixth in a series of discussion forums at Diabetes.Blog.Com, and is the August forum for discussions about Byetta. The participants in the original Byetta forum at this website overwhelmingly voted to initiate a monthly Byetta forum: there were 26 yes, 1 no opinion, and zero no votes as of early morning August 1.

The August Byetta forum was activated to allow comments on August 1, and at that time, the July Byetta forum was deactivated to prevent more posts to that forum. However, you can still read the posts there, and search for information throughout that forum by using your webbrowser's FIND or SEARCH feature while at that forum.

Bill the diabetesdoc

Diabetes.Blog.Com is a blogcompanion to our main website, the Diabetes Monitor, which you can find at www.DiabetesMonitor.com

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Posted by Bill the diabetesdoc at 00:00:00 | Permanent Link | Comments (596) |
Comments
1 2 3 4 5 6 7 8 ... 12
1 - Mary, This is as good a post to start the new month as any. Your doctors instructions supercede any advice given here and it does not sound like your sugars are totally out of controll just a little higher in the morning. I would check sugars closely and call him when he returns.

I made a PDF of the July blog if anyone is interested in having it bmbyetta@bellsouth.net and just so there is no confusion I was being a smart aleck when I set up the alias mail box I have no legal connection to Byetta.
 (Comment this)

Written by: Betty at 2005/08/01 - 13:25:50
2 - This is my fourth day on Byetta. The major side effect I have had has been severe nausea. My BG hovers around a constant 85. I am also taking 8 units of Lantus in the morning. After my firt shot on my first day of Byetta, I ate a banana and a granola bar for breakfast. A couple of hours later, I had to lie down because my stomach was so upset. Around 6 that same day, I was feeling better. I took my second shot, and sat down to a meal of hamburgers and baked fries. I lost it about 3 hours later.

I found this board on my second day. It's great!I have been following the tips of the other posters (crackers, sugarfree mints, Diet Coke, etc.) and they have really helped! I was thisclose to giving up on Byetta when I found you guys. Thank you so much! (Comment this)

Written by: Tamara at 2005/08/01 - 13:30:29
3 - Hello to all ....I started injections on 7/31/2005. Did not have any side effects until that night with the second injection. Had a very sick to my stomach feeling for about 3 hours...Then fell asleep. Does anyone know if you can take Phenergan for the sickness. (Comment this)

Written by: Cindy at 2005/08/01 - 13:32:22
4 - In reference to the drops - I tried something this morning: I tried screwing the needle on even tighter than I have been, and no drop! I've had a drop every time before, so maybe I just wasn't screwing the needle on as tight as it should be. I'll try it again tonight and keep you all posted. By the way, hardly any nausea still and bg still good. Did learn my lesson the hard way about fatty foods - tried deep fried shrimp and spent a few hours laying down on the couch, very sick to my stomache. So I learned that although I am not experiencing nausea as long as I eat as I should, I can't push it!! (Comment this)

Written by: juli at 2005/08/01 - 13:48:56
5 - I have been on Byetta since 7/18. My teeth still hurt. I called the Byetta 800 number and spoke to Jim. He said there were no reports of tooth pain in the trials nor had anyone else reported this problem. I explained that there were a number of people reporting this in the blog which he dismissed since it wasn't "clean" data. If your teeth are bothering you since started Byetta perhaps you can call and let them know. (Comment this)

Written by: LauraDawn at 2005/08/01 - 17:30:43
6 - I'm not yet on byetta. I'm still considering. My doctor said that taking it now could really prevent future problems. I've been off all diabetic meds for a full 4 weeks and my readings are always between 99-132...which according to the ADA is #1 less than 110 after an 8 hr fast and #2 that a random blood glucose taken at anytime should be in the low to mid 100's. So, all of you who are taking byetta, where your readings as low as mine when you started?
 (Comment this)

Written by: Debbie Bartkowski at 2005/08/01 - 17:48:21
7 - It's been 3 weeks for me now and the nausea is not really an issue anymore, just a little "twinge" now and then.
I also learned my fatty foods lesson on a spare-rib during week one. (I shouldn't have been eating it anyway!!)
My BG numbers are still a little higher in the morning than bB(before Byetta),but the rest of the day I'm getting great results.
I'm losing weight, thank God, bB I was working out every morning for 45mins. and just barely keeping the insulin weight off.
Now when I go to the gym I feel like I'm makeing progress and not just fighting off the insulin pounds.It was becoming difficult to stay motivated when I was working so hard and not moving forward.
I check this blog everyday.... it's been a great help.
 (Comment this)

Written by: Sue at 2005/08/01 - 17:50:20
8 - Ok, the folks at Byetta are awake now. If you have had or are having teeth pain call this number and report it 1-800-868-1190. They will file an official FDA Side Effect Report. They will need your doctors name, telephone number, your med list, when you started on Byetta, when the pain starts and stops and what you do for it and if it helps. It is important that they get a handle on this so please do this. I told them to expect other calls. If you have any problems with the first person you speak with on the telephone ask for the medical person.
 (Comment this)

Written by: Betty at 2005/08/01 - 18:29:29
9 - BOB the teacher in GA. State Merit said it is not covered. I called Eli Lilly and they ae working on the issue for all of use State Employees in GA that are type 2. I called the provider and Byetta is not even on their web site. I talked to the Health Coach and she had never heard of it. Was interested in how I was doing.

Eli Lilly lady said she woul get back to me in 1-2 days at the most. Too new to be covered--was her guess--it was not even in the system. My school system is the pilot for Definity but it is still PPO State Merit. That plan will go state wide when we do Open Enrollment again in Octotber. Definity is a Defined Consumer Driven Plan and I have been happy with it.

Please email me at home on how you got insurance to pay. I also emailed Dr Bode, my Endo at Piedmont and told him about this.

I went to MEVCO (RX paperwork provider) web site and it shows Byetta as a non prefered drug. I sure will work on getting that changed. I will see John Oxendine this coming Sat at the Gov's Fish Fry and will let him know about this-and how it is resolved. I have eliminated 5 of 7 daily pills and have wonderful numbers--lost 5 lbs too. Only side effect is the weight loss : )

Paying out of pocket will take every cent of Flex Spend I have. I called South Metro Baptist Assoc to see if a little church needs a pianist. I may have to take on a second job to pay for it. (Comment this)

Written by: Marcia metro Atlanta at 2005/08/01 - 18:48:46
10 - mboone@bellsouth.net (Comment this)

Written by: Marcia metro Atlanta at 2005/08/01 - 18:49:31
11 - I downloaded the anthem blue cross blue shield formulary into my PDA last night for Debbie and it showed the same as my Premera BCBS a ? which normally means they haven't made up their minds but my pharmacist ran it for me and it went through as a third tier copay. They don't pay for the needles though. I am on a 30 day free trial. My doctor had some cards from the drug representative. I think this is going to be one of those where persistance and who you get on the other end of the phone makes a difference. I would suggest that you try and see if your physician can get an MD Prior Authorization. My opinion it is a new class of drug. It stands alone. There is no similar or replacement and the insurance companies are on shaky ground denying coverage but they will try. I fought Alabama Medicaid on a daily basis in my Skilled Nursing Facilities. I know how to play word games. (Comment this)

Written by: Betty at 2005/08/01 - 21:04:23
12 - Hello all - I posted a brief message last week promising to return this week with an update.

I have been on Byetta (5 microgram twice daily) for one week now. I have had no side effects at all. I have lost 12 pounds in one week. My appetite is greatly reduced. My blood glucose has gone from being in the 400s (on 2000 mg Metformin daily - which I still take) down to the lower 100s. I'm sleeping better also.

I take all of my medicines right after my morning dose of Byetta (except for the Metformin) with no apparent problems. I take Toprol XL (beta blocker) and Hyzaar for blood pressure. I take Prevacid for acid reflux -- maybe that's why I have no stomach problems from Byetta? I take a multiple vitamin as well as additional vitamin C, vitamin E, and zinc (anti-oxidants). I also take Zocor for cholesterol.
I take the Metformin (2000 mg) with dinner.

I see the occasional small drop of solution at the end of the needle after the injection as some have mentioned. I try to count to "10" instead of "5" to make sure I get my full dose, and also turn the pen dial to the off postion as soon as I have completed the injection and pulled the pen away from my body. These approaches seem to reduce the amount of fluid still coming out of the needle. I inject in the abdomen near the navel area.

I am eating about 1200 calories daily. The following is an example of what I might eat in a day (low fat diet thanks to the advice of this group):

Breakfast: 3 eggs cooked in the microwave with a little bit of olive oil to keep them from sticking to the bowl. Maybe a little fruit (like cantalope). About 300 calories.

Lunch: 1/2 to 1 cup cottage cheese, a small to medium apple, some carrot sticks (10 to 20). About 400 calories.

Dinner: A can of tuna in water (or a couple of hard-boiled eggs, or cottage cheese again), fruit (cantalope or apple), and vegetable (a can of green beans, or spinach, or maybe a dry baked potato). About 500 calories.

Total: about 1200 calories

I drink water and tea and the occasioal diet soda.
I inject the Byetta right before breakfast and right before dinner.

Additionally, I have seen my blood pressure drop in one week from the 200/110 range to 124/80 today. My doctor explained that the high blood sugar makes the blood pressure go up because your body retains water to try to dilute the excess sugar in the blood. When the sugar drops, so does the high blood pressure (at least for me).

I was able to start walking a half hour daily without getting totally out of breath.

Byetta is truly a remarkable drug! If you haven't started it yet, don't be afraid to try it. And yes, sticking your fingers with a lancet hurts much more than the Byetta pen needle. I usually don't feel the needle at all.

My co-pay was $31 for the 5 mcg pen and $5 for 100 needles at Osco (Albertson’s) pharmacy.

Thanks to everyone for the great information and advice shared on this forum. And again thanks to Bill the diabetes doctor for setting this up for us. (Comment this)

Written by: mr smith at 2005/08/02 - 00:29:54
13 - To Debbie Bartkowski:

I think you will find that your numbers are quite a bit lower than most of the people who were put on Byetta. I'd suggest reading the last two months' worth of entries to get a feel for where people started. Betty said she made a PDF file of it and you can reach her at bmbyetta@bellsouth.net, as stated in the top post on this page.

My average readings were about 145 when I started Byetta, and I wouldn't want to go lower than 100 because I get symptoms of a low when I do. Some people on this blog are showing numbers in the 300s and 400s. I think it's up to you and your diabetes doctor to determine if taking Byetta is a good idea for you. (Comment this)

Written by: Mara at 2005/08/02 - 02:47:04
14 - Actually I probably am the only one with readings as low as Debbie when I started because I have Metabolic Syndrome and not Full blown Type II Diabetes. It's kind of a a moot point because at some point without treatment I will progress. Because of the severity of my Coronary Artery disese and because my doctor felt it was imperitive to lose another 50 pounds here I am. There are some other strong reasons to consider it even without BG out of control the prime one being the data on beta cell regeneration. My hope is Byetta will reverse some of damage to the pancreas and losing the weight will give me an edge to perhaps further delay or even prevent Diabetes.

The American Diabetes Association recommends that A1C concentrations should be lowered to less than 7%, fasting plasma glucose levels should be maintained at 90 to 130 mg/dL (5.0 to 7.2 mmol/L), and 2-hour postprandial plasma glucose concentrations should be less than 180 mg/dL ( (Comment this)

Written by: Betty at 2005/08/02 - 03:40:06
15 - It doesn't like it when I quote and chops it off.

The American College of Endocrinology recommends even lower glycemic control targets: A1C concentrations of 6.5%, fasting plasma glucose levels of less than 110 mg/dL ( (Comment this)

Written by: Betty at 2005/08/02 - 03:49:38
16 - I am going to my endo in the morning to see if I have him talked into letting me try the Byetta. I try to eat low carb when I am behaving myself (which isn't very often,and that is why my weight and blood sugars are so high). I understand I am going to have to cut down the fat and indigestion causing foods. I am wondering if you all are able to eat the following things without getting sick: scrambled eggs, bacon or sausage (both are fatty, I know), cheese, cooked brocolli or zuchinni, fresh cauliflower, ranch salad dressing. These are some of the things i eat regularly when I am low carbing and they are all the kinds of things to cause indigestion. If i get to do the Byetta I am not sure what to eat. From everyone elses posts I understand that I need to go low fat and small quanity. Several have gotten sick on pizza. Can anyone eat even one slice or just the toppings? Can anyone eat tomato based sauces in small amounts?

I can't get to the first part of this post to read it or edit it, so please forgive typos :) (Comment this)

Written by: karenk at 2005/08/02 - 08:09:36
17 - KarenK:
Everyone's response to Byetta tends to be individual within the parameters of both the positive effects and negative side effects. I've been doing really well with the nausea, headache, tiredness and feelings of coldness (my wife and I can finally agree on a common room temp). I have eaten scrambled eggs, bacon, sausage, all the items you mentioned, steak, pizza toppings (generally 1/2 slice of pizza plus a couple of toppings from 3 slices) and even tomato/garlic based items. In general, I would inject and then IMMEDIATELY eat moderately of any items desired (MODERATELY is the word!!!)

Last night, however, I did not get the chance to eat until almost 50 minutes. I ate a moderate meal of low carb and low fat spaghetti (1/4 cup noodles, 1 cup meat sauce & 2 slices of low carb light bread with light spread of garlic butter). I've had this meal several times in the past 3 weeks of Byetta use with no problem. But, last night, I started having terrible stomach cramping with severe gas. In order to mitigate the problem, I followed the advice on the board by sipping some soda, consuming a small cracker and taking a couple spoons of stomach antacid. It was still a long night though.

In summary, I've found that I do best by immediately eating a moderately light meal after injection. The variety of food doesn't seem to be as bad as the length of time and size of meal. (Comment this)

Written by: Tim F at 2005/08/02 - 12:35:40
18 - Day 4 on 5mg. No side effects but am not looking for them. I am conserned that my pen is not giving me the proper dose. Today I am taking the pen to my health care provider (who is also taking Byetta) to check. When the initial setup was done (twice), only a couple of drops came out and I am unable to see any medication in the tube.

Being unfamiliar with shots I went to the Byetta web site to reinforce the lesson I got at the Dr's office. Very clear instruction are shown in a video. Lots of good facts but saw no where to get a "welcome pack".

My numbers are down slightly but that may be to the more structured routine I have kept. Am avoiding the scale for the time being. Boy, this stuff requires a routine. (Comment this)

Written by: Sharron at 2005/08/02 - 13:18:23
19 - I’ve been reading this blog for the better part of 2 weeks. I started Byetta 10 days ago. I realize a lot are having the nausea, personally I’ve only had it twice. The first time when I was trying to please my mother-in-law and over ate. The second was due to greasy food. My pre-Byetta readings were averaging 250. Since starting Byetta I’ve had no readings over 175 and only three over 150, the average number of tests in a day is 5-7.

I’ve seen where a couple of people have commented about their fasting readings being they’re highest. I was one of those people. I found that I have to have my evening snack. I was never a late eater so I used to skip it a lot. I found that if I eat my evening snack my sugar levels are lower than when I don’t. I’ve also found an evening snack higher in fiber will keep my fasting readings even lower. This may not work for everyone, but I just wanted to relay my results.

Just remember in the words of Mary Poppins, “A spoonful of sugar helps the medicine go down.” Byetta and nausea is the medicine but our spoons are filled with lower readings and disappearing pounds.
 (Comment this)

Written by: Nancy in Ohio at 2005/08/02 - 13:38:22
20 - After reading the comments about injecting and then immediately eating, I changed my routine and tried this for 4 days. For several weeks I always waited between 45-60 minutes to eat. When eating immediately following the injection, I ended up with nausea during those 4 days, BUT I also noticed that I didn't seem as full as quick and ate more of what was on my plate.

So, for me, I guess I need to stick to the waiting period of at least 45 minutes to feel more satiated and not experience the nausea. Each of us seems to find a personal niche in this regards that works well for them. I'm glad I tested it out though, because injection immediately followed by a meal would make things easier such as dining out, meal breaks during class times, etc.

For the person looking for the welcome kit, go to www.byetta.com/welcome to locate the page. I had to call customer service myself to find it.

Off Subject Side Note...I found a website that gave the details of ancient Indian folklore as it pertains to different animals...the Gila Monster Lizard represented the following: "Remain balanced and determined in order to be successful". It's a little scairey how true that is for us diabetics all these years later :-) (Comment this)

Written by: Beverly in TN at 2005/08/02 - 13:51:26
21 - What I was trying to sat last night when the Blog got mad at me for quoting is the ADA has one set of gudeline. The endocrinologists have another and the cardiologists have started weighing in that an even lowerer BS should be the goal if you have CAD. And that if you have a FBS higher than 80 you should be evaluated for Metabolic Syndrome so that is really how I came to be among you. Actually I have never really kept my BG except AM so I have no records so I have no idea if I'm going up or down but my numbers seem to be going down only slowly if at all and still are in the 90-100 AM and 95-110 range PM. I am trending them on a graph in Diabetes Mentor and there is a slow downward trend. I know most of you would kill for those BG but you also don't have an uncorrected cholesterol of 400 to deal with either or already have five coronary artery bypasses. (Comment this)

Written by: Betty at 2005/08/02 - 13:57:01
22 - Sharron,

You said you were concerned that your pen was not giving you the full dose. I had similar concerns when I started. During my first pen setup, only a tiny drop appeared at the end of the needle. I too saw the video on the Byetta site where it looked like 5 small drops came out. I called the Byetta help line and the representative told me that once you see any liquid coming out, the pen is "primed". I was told that since the pens are slightly over-filled, you can actually do the setup (which means just wasting a dose) about 4 times and still have enough medication for your month. But of course do not do the setup every time or you will run out of medicine. After my first dose, I was worried I wasn't getting the full dose, so I did the setup again (wasted a dose) and saw more liquid come out than during the initial setup (probably 5 small drops).

Keep in mind that the solution in the tube is completely clear (or should be) so it may give the appearance that nothing is in it. Also keep in mind (I'm a chemist, so here comes the technical details) that the tube contains 1.2 mL (milliliters) -- with slight overfill for setup -- of a solution that is 250 mcg (micrograms) of Byetta (exenatide) per 1 mL. Since there are 1.2 mL, this means that the pen contains (total) 300 mcg in 1.2 mL. You take 60 doses a month (2 a day for 30 days) so 300 mcg divide by 60 doses gives you 5 mcg per dose. We all know that -- but what I am getting at is the volume of liquid that is delivered is very small to give you that dose. 1.2 milliliters is also 1200 microliters. When you divide 1200 microliters by 60 doses you see that you are getting a volume of 20 microliters per dose. That is a VERY small volume of liquid. If you look at the grey plunger in the bottom of the tube (near the end you hold - opposite from the needle end) you can monitor the progress of the grey plunger as it will very slowly move up the tube over time (over multiple doses). After 15 doses, I can definitely see that the plunger has moved up the tube (towards the needle end) from where it was when I started with a new pen. 15 doses x 20 microliters is 300 microliters, meaning I have used 1/4 of the available volume in the tube. You should of course verify with your doctor that the pen is working if you are concerned. I just wanted to share that I had similar concerns when I started.

You said you were on day 4 and your numbers were down slightly. Stick with it - I am now on my 8th day and the numbers have gotten better every day. (Comment this)

Written by: mr smith at 2005/08/02 - 14:23:56
23 - mr smith

Thanks for your info. You have eased my consern but think I'll still check with the provider. Would hate to go a month not getting the 5mg and go straight to 10mg. My imagination can sometimes get carried away. Am trying to go with the flow and not let it consume me. (Comment this)

Written by: Sharron at 2005/08/02 - 14:52:37
24 - Big day today. After 6 weeks on byetta and nothing else, and no daily testing (I was not instructed to do so), I went to get my blood levels. Also worried about liver enzymes that have been naturally high normal, but when diagnosed with Type 2, were high. Seems to be some relationship. Will see what all the tests say today. I will give you the results later today. Wish me luck. (Comment this)

Written by: philliegirl at 2005/08/02 - 16:14:47
25 - Phenegran: Someone asked if you could take it for the nausea....YES! My doctor prescribed it for me to get through this rough stage. I was having a really hard time. Be aware that the phenegran can "knock" you out for a bit. I was taking it with each shot for about a week,(I was on vacation!)and now take it maybe 3 times a week. I am coming to the end of my first month on byetta. (Comment this)

Written by: Jennifer at 2005/08/02 - 16:27:45
26 - Thanks for the comment on the Phenegran . it makes it easier to know there is someone else out there that understands. My 3rd day and I am still feeling sick but sicker at night.Main problem I have to work and this can cause problems. (Comment this)

Written by: Cindy at 2005/08/02 - 17:29:49
27 - At present I am on to 10 mcg and have been for a week now. I went throufh all of the 5 mcg with all of the side effects that everyboby is complaining about-- the getting sick part. I got over it when I thought that it was the milk causing my problems. I have started to 10 mcg and feel that I am back at the beginning again but worse. I have been sick every night with dinner last night not staying where it should. I know that it slows down digestion but what came up sure seemed like a lot more then just dinner , lunch and breakfast. Seem like a couple of days worth. Has anyone else had this problem? Plus I did not get the education on what to eat and what not to eat, so I am sure that that has some thing to do with the stomach problems. Is there any meds out there that can help stop being sick. Plus my morning shot does not effect me as badly as the evening one. It gets bad enough that even water makes me sick. Thanks for listening. (Comment this)

Written by: Al at 2005/08/02 - 17:55:07
28 - I had no trouble at all with drips on my first pen, however, with the second, sometimes no matter how long i hold it in, there seems to be a miniature drop on the end. Wonderered if it could just a slight difference in the manufacturing of each pen? with mine, during the setup, i can see a stream come out when pushed. it seemed very obvious it was working. however, with the second pen i used, nothing came out the first try, and it was on the second that i could see the byetta come out. i agree, that with colorless med it is hard to tell what is happening when the doses are so small, but mr. smith is right, it IS reassuring to see the grey plunger move toward the needle more and more. you do know it is injecting! still jealous of those of you with low blood sugars - mine was 348 fasting the other day on byetta and 10 mg of glucotrol a day. i really wonder what makes it so work for some and not others, although most of you with lower numbers seemed to have started with lower numbers. i would LOVE to see a 150 now and that is what many of you started with. i found that if i wait 45-50 minutes to eat after the shot, my appetite is VERY curtailed. if i give the shot and eat within 10 minutes, i eat way more. NO side effects at all in this 2nd month, just wondering whether it will work for me or not. even the excess stomach acid seems to be mostly gone, however, lasagna is not a good choice i discovered last night! (Comment this)

Written by: kathyg@troycable.net at 2005/08/02 - 17:59:39
29 - Hi. Just started yesterday with Byetta 5mg and was a little quesy today. I also have had a headache and stuffy ears today. Are these side effects or possibly the onset of the common cold? (Comment this)

Written by: Trudy McRoberts at 2005/08/02 - 18:19:43
30 - Everybody is an individual and the trend of your personal data is what's impotant. So I have been graphing my data daily and watching a nice pretty little downward graph. It isn't anything dramatic but it is progressive. You can't compare you to anyone else. You are unique and while we can share and support and suggest ultimately it comes to down to you and your your personal health care provider.
I urge all of you to keep good trendings for your physicians to review. It's kind like swimming as a competitive sport. You work against your on times and try to beat your own times. (Comment this)

Written by: Betty at 2005/08/02 - 18:28:07
31 - I have been on the Byetta since 7/15 and had 2 days of nausea then it subsided but I still have the 2 hour after effect of feeling kind of lethargic/ low energy and just not myself totally .....this too is getting a little better but I worry about when my dosage increases.....now though , I have started having a sharpish backpain on the left , under my shoulderblade , towards the spine and sometimes also a sharpish pain under my left breast, I know this isnt heart related. ....this is new to me and I havent had this before.....anyone having new backpain? I do worry about the newness of this med. and what they may find out about it later.....I also get the leftover drop on the pen and the periodic bruising.... (Comment this)

Written by: Vicki at 2005/08/02 - 19:04:28
32 - Vickie, Call your MD, you do not know it is not heart related without it being checked out. (Comment this)

Written by: Betty at 2005/08/02 - 19:14:49
33 - I started the 10mcg 11 days ago. I had moderate nausea on and off the first two days. But now only mild nausea every now and then. I've lost about 12+lbs and my Bs are down. The side effect that is the biggest problem for me is the extreme tiredness. On Sat. I took a 3 hour morning nap and a 2 hour afternoon nap. Everyday I think, "just let me get thru the day."

I've noticed that if I don't have my finger on the button when I pull the needle out, there isn't a drop on the end of the needle. If I eat immediatley after my injection, I can eat a lot more, but still less than before. I haven't noticed any patterns for the nausea. I try to eat healthy, but when I eat something fatty or spicy it doesn't seem to affect me. I push myself to exercise 3 to 5 times a week but it's really difficult feeling this tired. If it wasn't for the tiredness I would be feeling great.

I know that no one has been using Byetta for more than a couple of months, but I would love to hear other's experience with the tiredness, what they did about it, has it gone away or gotten better over time? My Dr.'s appointment is the last week of Sept. If I'm not feeling better by then, I don't know if I will be able to continue taking it.

I love this Blog! I feel so grateful for it.

 (Comment this)

Written by: Lisa in TN at 2005/08/02 - 19:17:05
34 - I felt pretty dumb a time or two (maybe even three times!) too.

I stuck needle into my skin but had done no moving of the arrows,or pulling out. Had to redo it right. Ouch, I did feel those!

Reading is a wonderful skill! I have to remind myself to practice once in awhile!

I like to blame these actions on microvascular changes in my brain due to my metabolic syndrome of HTN & diabetes (both of which are improving w/ Byetta), but I know the truth is that sometimes I just goof up! Duh!?!?

Question for some of you clinical trial folk that have used Byetta longer than us newbies: does the tiredness ever pass?!? Am sure looking forward to it!

Because of my diminished appetite and dietary choices, the weight would come off easier if I had more energy to move! Am walking 2 miles 4-5 times a week but know I could do more, if I could stay awake after the shots!
At work, I find the sluglike feeling very annoying. I am on my feet most of 12 hrs every day at work. No naptime in the ER!

Glad to hear each of your stories. Thanks for sharing. Learn all you can about your disease, where you are in it's cycle & work with your docs to get those sugars down!

 (Comment this)

Written by: Doris at 2005/08/02 - 22:30:01
35 - Kathy G-
Similar to you, when I started byetta my am bg level was 280-320 and if it was a really good day, it might get down to 180, just might, before I went to bed. My A1c from blood drawn on June 1 was a 10 which means my average bg level over 3 months was 275. For me, byetta was like flipping a switch in my body. However, before byetta, nothing worked for me and my endo changed my meds every 3-4 months without any impact on my diabetes. Byetta is like other drugs, what works well for some may not work well for others; for example, I know lots of people that I have envied over the last 2 years who got good results with the same pills that were doing me no good. Hang in there for a while, maybe you'll begin to see results within a month, if not, definitely discuss it with your doctor. This has been such a great med for me that I am hoping it will work as well for many many others that take it. (Comment this)

Written by: Beverly in TN at 2005/08/02 - 22:34:18
36 - Doris -
I am in week 9 of byetta and my tiredness has definitely passed. I am very disciplined with my sleeping patterns, same time to bed each night (w/in an hour) and up at 6:30. Before byetta, my bg levels were so high that I actually catnapped as much as possible, up to 3-5 hours each day (I kept a log to show my endo)...you wouldn't beleive how clean my house is and the lack of dirty laundry sitting around here since I started byetta - it made a huge difference to get those hours back as waking hours. Are there any other possible medications you are on that might cause sleepiness? Or are you experiencing a great deal of stress - you might be sleeping, but not necessarily resting. If it doesn't get any better maybe your doctor may want to do some tests...thyroid, etc.

Your walking program is awesome - I can't imagine doing anymore than that! Kudos to you!
 (Comment this)

Written by: Beverly in TN at 2005/08/02 - 22:40:13
37 - HAPPY NEWS. I spent 4 hours on the phone with Eli Lilly and my insurance to see why it was not in the data base. Today, MEDCO emailed me to say it had been added. It will be covered. THANK YOU ELI LILLY---for your help.

I checked around for prices and found they vary by as much as $150 for a 90 day supply. Walgreens ($695), my normal drug store was $120 more than Sam's Club ($575) I decided to go with Kroger Grocery Store for $580 because the drugstore is open longer hours and is closer. I shop there on Wed for the Senior discount!

So, I emailed my Endo's nurse and requested a new RX for 90 day supply called in to Kroger. I also left her a voice mail. The Kroger Pharmacist has already been dispensing it although he had none in the store. I am still in their data base and no doubt will transfer other RX to that store. The Pharmacist said it is to be refrigerated at ALL times--no exceptions. I have a note from the Endo stating that I am to keep a refrigertor in my classroom. I am in a trailer. Besides at that price, I would not keep it in the Teacher Lounge.

It will cost me a 10% co-pay so you see why price is a consideration. That will be $58 every 3 months. I was beginning to think I might have to pay for it out of pocket and was prepared to get a second job to do so. I am not currently playing for a church--as pianist, but have asked to be placed in a church $150 per week is what I would get. I will do that if they find me a church. I can always use the money for a SEP IRA.

I have been takaing Byetta for 3 weeks and have not had a single problem. Today was the first day back for teachers at school. I went to bed at my normal time of 1:30 AM--yes that is correct. I got up at 6:40 and was at school by 7:30. Ran all day--6,988 steps, and left school at 5:30. Plenty of energy although some have posted they are having a problem like that. I forgot lunch though. At 2pm, I thought--have not gone to lunch, so I tested and was at 89. Had a snack and ate when I got home at 5:45. Have lost 5 lbs so far. I will start 10 mcg sometime next week. Students start next Monday, and I hope to have the same results with the higher dose. I will be take 10 mcg dose for 90 days no matter how I feel. I am the kind of person that keeps on going no matter how I feel. Hope to keep my record intact! (Comment this)

Written by: Marcia metro Atlanta at 2005/08/03 - 00:07:47
38 - I was just told that I have to fly to Arizona on the 24th and return the 26th for work. Does any one have any suggestions as to how to travel with Byetta, and the needles? Do I need something from my doctor? I guess I need to let the airlines know what about airport security? I am too concerned about putting the Byetta in bag and check it so I'll put it in my purse, but what about the xray machine? (Comment this)

Written by: Mary at 2005/08/03 - 06:43:22
39 - Good news....I saw my endo today and he said I can try the Byetta. So, I have my video and supplies and one month pen. I am going to wait to start it until Friday, which is my day off. I sure hope this is my "miracle" cure for both my blood sugar and my weight.

TimF...I am glad you are able to eat many of those things that I am hoping to still be able to eat.

I would still like to hear what more of you are eating or what type of diet you are following. (Comment this)

Written by: karenk at 2005/08/03 - 09:40:13
40 - Mary....I don't think you should have a problem with the airport, especially if you carry your pen in its box. I think most of the airlines allow diabetic supplies with out any question. I flew a few weeks ago and getting through security was much easier than I thought it would be. There were 3 of us flying and they did not hand inspect any of our stuff on either flight, and we did carry on our luggage. (Comment this)

Written by: karenk at 2005/08/03 - 09:44:59
41 - Have been on byetta for 8 days now. A little nausea but a little soda does help. I have lost 2 pounds and for me thats great. My bs are in better control and I have been able to back off on the lanuts by 20 units per day. So all and in doing good on it thanks. (Comment this)

Written by: Matt at 2005/08/03 - 12:55:58
42 - My Glucose was down from 200 to 111. Also, liver enzymes coming down slowly, but very happy with numbers. This medicine is really unbelievable. (Comment this)

Written by: philliegirl at 2005/08/03 - 13:02:55
43 - Hi everyone! Thank You for this blog site. It's wonderful.
This is my first time writing. I was just told by my doctor at Joslin Diabetes Center in Boston, MA that he wants me to try Byetta. My morning blood sugars (after a cup of coffee) are about 179 if I don't exercise and about 129 if I do. When I take by BS during the day it ranges from 98 to 130. I am on Metformin and Actos. I am very nervous to try this drug because it is so new and I worry about being so tired and unable to work. Not to mention the nausea. I am also wondering If I will have low blood sugar symptoms. Have those feelings subsided at all for those of you who have had severe side effects? Thank You and I will keep reading. (Comment this)

Written by: Paula at 2005/08/03 - 13:46:02
44 - Hi! It's me again. I forgot to say that I have to go to a nurse educator next week who will show me how to inject the medicine and hopefully give me some info. Iwill be taking my first shot at that time so I have a week to read as much info as I can until then. Thanks (Comment this)

Written by: Paula at 2005/08/03 - 13:50:18
45 - When I recently flew from SFO to St Paul I took the Byetta Pen in a cold pack with my carry on luggage and it went though without question.

For breakfast I often have 2 eggs scrambled, bacon or sauage, perhaps some cottage cheese. Lunch: two pieces of chicken, V8, Dinner: Tuna salad, brocolli, Artichoke, green salad with cucumbers and Avacado. I have not had any exceptional problem with the food, it doesn't seem to me that the food I take is related to the symptoms of adjustment. They just happen or don't happen.

This is my 47th day on Byetta and while I have had some tough days with Nausea, diarrehea, coldness, headache and tiredness, they have been few (5) and some days nothing at all. My numbers have averaged 137. I was taking 100 units of Lantus.

I have a hard time reading the signatures so I will sign mine here. John @ jLd65@aol.com (Comment this)

Written by: John Dodson at 2005/08/03 - 14:04:00
46 - I haven't had a problem with a drop on the needle, but I have seen a bead of Byetta on the injection site. Don't know how much I am losing or if there is a way to stop that from happening. (Comment this)

Written by: Bonnie at 2005/08/03 - 14:30:50
47 - I want to thank you for this site. I have gotten lots of good info here. We are all different in our responses to medicines, but it helps to hear what others are going through. I started byetta on July 15 and took it as directed until Aug 2. In those 18 days there was possibly 2 days I wasnt sick. The nausea was dailey, some days worse than others. It was only nausea with the exception of July 16 and Aug 2, on those days I actually lost all that I ate. I have lost 18 pounds since taking the drug. I have to force myself to eat small meals just to make the nausea better. Well, yesterday was the last straw for me. I cant function feeling this way. I am retired and dont know what I would have done had I still been in the work force. I am thrilled about the weight loss, however I know that when you loose weight that fast it will most likely just reappear. I called and advised my doctor yesterday of my decision to discontinue the byetta, and I have an appt to see her today. My bs were very level during the past 2 weeks never below 82 and never over 135. So I know byetta works at doing what it is supposed to do. I am just so tired of being sick at my stomach.
Again I do want to say thanks to all of you who have shared your thoughts. It has helped me hang in there for the past 2 weeks...good luck to all ..... (Comment this)

Written by: barbara at 2005/08/03 - 15:11:53
48 - I thank everyone for their posts on thei board. They have been extremely helpful. I am in my third week of Byettta now and have had a few minor reactions. I got slightly nauseated for the first 10 days at times. I get a little sniffling and sneezing right after I take the injection. I have noticed a huge increase in my energy level since I started on this. My husband says I have come back to life! The most major bad reaction I have had is that my teeth hurt terribly. In fact, they feel like they are about to fall out. I have talked to Byetta about this and I am going to the dentist in 2 weeks. I'll let you all know what he says. At first, I wasn't getting the full dose because I wasn't pushing the pen in all the way or was taking it out too soon. I could tell immediately by my numbers if I had gotten the full dose. When I do get the full dose, all the time now, my numbers are consistantly around 95. I used to have terrible bouts with hypoglycemia. But since on Byetta, I have not had a single low blood sugar episode. I have lost over 10 pounds since I have been on the drug. I stopped taking Actos about the same time I started taking the injections , so I don't know which has been more effective in my weight loss. Actos casued many problems for me, especially a HUGE weight gain in a 3 month period, dipsite exercise 5 days per week and going to Weight Watchers.
Can anyone answer this question? Once you stop getting sick or nausiated, does you appetite come back? Are we losing weight because of the loss of appetite due to the nausea or does the drug itself cause us to lose the weight. Once our bodies have adjusted to the medication does the weight loss continue? I have to seriously consider the benefits of this in regards to what it is doing to my teeth, which is not improving over time. (Comment this)

Written by: Gloria at 2005/08/03 - 15:18:41
49 - I have had minimal nausea after 6 weeks on it. I have lost about 17 pounds, but I think it's because I'm on Weight Watchers and am following the diet strictly. I do feel a "full" feeling about an hour after I take the byetta, but my appetite is no different as far as wanting to "pig out". I just DON'T because I'm trying to behave on the diet. In other words, I think the nausea is definitely affecting your appetite in that you don't want to eat (or can't). But for me, as soon as that would dissappear, the enjoyment of food is there. I don't think
that will ever disappear for me. Does that make sense? (Comment this)

Written by: philliegirl at 2005/08/03 - 15:46:43
50 - In response to the question about what causes weight loss. I understand Byetta does three things in our gut. First, it slows digestion by slowing the stomach release of nutrients into the small intestine, thereby creating a feeling of fullness. Second, it nurtures production of Insulin in the Pancreas which is matched with the release of food into the small intestine. Third, it supresses the creation of sugars in the Liver. All three actions are controled by the protein conained in Byetta, Exantide (sp). There is a good explanation of this process on the Amylin website. Thus it is not nausea that is causing weight loss but rather the feeling of fullness which sends the signal that you do not need to eat more. I am sure that my explanation is full of mistakes but it is my understanding of the process. One reason I wrote it out was to receive more accurate information. I know we are all trying to understand how this new drug works. So the conclusion is that weight loss will continue after nausea goes away. I have read every blog since the website began and I have found them all useful and helpful. It is good when people share their experiences openly and honestly. Thank you, John Dodson (Comment this)

Written by: John Dodson at 2005/08/03 - 16:14:48
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