Byetta 12: Discussion Forum for the week of February 26
By the way, you'll also find some information about Byetta at two other Discussion Forums: odds'n'ends, and research about meds.
Also, you can still read the earlier comments (at the other February weekly forums, as well as earlier monthly Byetta forums), and search for information throughout those forums, by using your webbrowser's FIND or SEARCH feature while at the earlier forums, or by searching at the advanced search feature that is at the Diabetes Monitor.
Bill the diabetesdoc
wwq@diabetesmonitor.com
Diabetes.Blog.Com is a blogcompanion to our main website, the Diabetes Monitor, which you can find at www.DiabetesMonitor.com.

Ther are several people here who've been here for some time and we're pretty current on each other's travails on Spit..
And yest there's a number of new Spit users here also... I'd be curious to hear how they're doing with side effects...weight loss etc.. If you respond to this..please indicate how long you've been taking the Spit.
John (Comment this)
Had a BS reading of 87 yesterday before dinner.
Yahoooooooo!
Hopefully it's a sign of things to come. (Comment this)
I have been on the spit for 1 week now (started 2/17) and the side effects so far aren't bad. Some nauseasness about 2 hours after the shot..some tiredness about the same time. As for weightloss, I'm not sure yet due to my scale not accurately weighing past about 250. I'm at 287, but hopefully down some. My morning fast numbers are still hanging around the 120's. Earlier in the week the morning fast was around 130's prior to switching one of my Metformin 500 to bedtime. Thanks. Martha (Comment this)
Hi Martha,
You say your morning numbers are "still around 120 with 130 earlier in the week".. What were those numbers before you started The Spit? How are your 2 hr after meal numbers before and after starting The Spit?
John (Comment this)
I don't really know the before spit numbers because I wasn't testing that regularly because of not being 'labeled' a diabetic. It was pre-diabetes. Not all of my numbers are cooperating to be 'diabetic'. So my doc is taking this to try to prevent all the numbers from cooperating. Does that make sense? Needless to say I'm more obsessive about taking the readings now. My 2 hours post is averaging around 105. The other day prior to lunch I was feeling REAL funny (nauseas, trouble reading) at I tested and it was 90. Does any of this help? Martha
PS..Have I mentioned how much I appreciate this blog and the support everyone so willing gives? Thanks everyone! (Comment this)
I am now quite convinced that the pens become less effective over the 30 days. Perhaps it is my handling of them. I travel 2 hrs and 20 min/day. In this time, the pen stays in a soft mediport bag in which there is a gel pack. On either side of these 1hr/1hr/20min trips, it resides in a thermometer controlled refrig. My thought is that, once the pen is openned, the countdown starts every time the pen is out of maximum conditions. I have spoken to Amlyn several times about when to give up on a pen. (I have to find my note to myself for accuracy). They said that the pen could be used after so many hours in room temperature, I'm sure it was over 100 hours. (For example, I left a pen out in room temperature for 4 days! They told me to use it because I could count on it until around 6 days! out of refrigeration. Please check this yourself. Don't rely on my memory). So, I'm wondering if I could conclude that the time in transit, even though the pen is cooled, should be considered part of the pen's countdown to ineffectiveness.
Also, all this time I've thought that my mediport bag was the same as the Medicool pack. Guess I've got to go back to the pharmacy.
This message really should go into travel, but I'm afraid you Byetta users won't check there. Thank you Dr. Bill for the new forum. (Comment this)
Been on byetta since Sept 05. Lost 44 lbs so far. MY # 2 hours after meals are fine and in normal range. My biggest problem is waking #. Last night before bed 66 took snack and my 1000metforim. This am It was 146 ??Hope this helps.
PatI know they say 4 days out is ok. But I tend to think byetta has proven to be very fussy about the condition its kept in that 4 days is a lot.
No matter which forum you go to the beginning will show in "recent comments" and we will know where you need us. Have a great day. (Comment this)
WELTS - Have those of you with welts tried wiping your skin off AFTER the injection, say after 30-60 seconds. Occasionally with insulin and byetta, a little will seep out after removing the needle.
MORNING #'s - From what I've read there are two causes of high morning numbers, the dawn phenomenon nad the other being the Symogi (probably spelled wrong) effect. The dawn phenomnenon is the morning liver dump to get our bodies ready for the day. The other is a rebound effect from dropping too low during the night. I don't think byetta will help with either until the long acting version. The two situations need different reactions. There was a good article in a recent issue of Diabetes Self-Management on this, but I don't remember exactly when. Maybe having two causes is part of why what works for one doesn't work for another. Or maybe the cause from day to day in a person is not necessarily the same. I know if I get a chance to sleep in (my dogs don't generally allow that often), my bg will be higher than usual by 10-20 points. Pat in Idaho (Comment this)
website (CLICK HERE) and read more about diabetes.
(2) Also: if you haven't yet answered our polls to tell us more about yourself, we'd encourage you to please do so:
(Comment this)Most of us aren't to worried about overnight numbers in the 140's. The "Dawn Effect" hits most all of us and it's frequently the case that the overnight number can easily be higher than any other 2 hr after meal numbers throughout the day. It's tough to understand because it's saying that your highest number of the day is the one furthest from a meal....
Pat,
Yes, Amylin has said that the pen maintains it's potency for 144 hours at room temperature... So, assuming you don't exceed the 144 hrs before your 30 days from starting to use the pen run out...you should be ok.
I've got both the travel bag from Amylin...which is only good for 2-3 hrs and the Medicool pen travel bag ($44 @ www.medicool.com for 12 hrs) and although the Medicool is probably overpriced for what you get, it does the job.
Martha,
Many of us have noticed that when we drop below 90 or so, that we start to feel poorly.. It seems that the higher your numbers the lower your tolerance to less than 90 you have. When my numbers were running around 200 I felt bad in the upper 80's... now that I have excellent control I don't start feeling bad until mid to low 70's...
I continue to find the term "pre-diabetes" interesting because a normal HbA1C is 5.0... The ADA says you're diabetic at 7.0... so there's this range from 5.1 to 6.9 where people are "transitioning" I suppose...
John (Comment this)
I have been on Byetta since December 22nd. I did 5 pen for about 2 weeks then graduated to the 10. Had Nausea at first belching etc. Appetite very low. Then Appetite came back I continued to eat regular. Numbers were all over the place. At 9 Weeks Nausea came back to the point I could not function and ended up going to ER. No one knew anything about Byetta. I started back last Wednesday after 3 day break got started on the 5 then 10 in the morning 5 at night. Now doing 10 both times. No more Nausea but staying busy at work so no time to lay around with chills etc. Weight loss has been constant over 30 Pounds now. Taking Metiformin 2000 every night before bed it is ER and Endo says take them all at once. Also take 4 mg Amyral. Stopped Lantus as she swears it does not work with Byetta correctly. I wonder as my numbers were high I did take some if this did not contribute to the stomach problems? But it's just a guess do not know. Any way morning numbers have been 84, 90, 89 very low. Sometimes I shoot up over 200 during the day depending on what is eaten but they seem to be around 100 before meals. Have been Diabetic 16 years and Lantus, Actos etc. Put weight on me. The "spit" is well worth it especially with Weight loss which to me comes easily. I am sure there is no way I could lose weight and keep numbers down with the other medications. Dieting with almost no carbs ever produced these results. last time I was even close to getting down to a decent weight was in 1999-2000 when I ran 5 Marathons. Today I hardly exercise just work and eat decent but weight and BS down. To say Byetta has been anything less then Marvelous Would be an under statement
(Comment this)
Yep...good to hear.... I've been following your notes and I'm glad your return to Spit has been working..
Your meds are the same as mine except that you're on higher doese..
Mine are 10-Spit, Metformin 1,000 (1x) & Amaryl 2mg.
Smmes to be a good combination here also.
John (Comment this)
I, also, am in the "no-man's land" of not officially being diagnosed. My AICs have been creeping up with my highest being 6.6 this past January. I have been on metformin and zocor for several years. I do not have to test my bgs nor use any other medications. I originally was referred to an endo for PCOS. While I have many PCOS symptoms, I have luckily never had blood pressure or triglyceride issues.
I am my endo's first patient on Byetta. Like someone previously stated, my endo is hoping Byetta will reduce my numbers away from the official diabetes doorstep. The side effect of weight loss was also a big reason for his decision to use Byetta on me. I go back for a 3 month follow up in April. It is the first time I will ever be looking forward to my bloodwork! As of Feb. 13, I had lost 13 lbs. I will stop back in the dr.'s office this coming week to check on further progress.
Finding this blog was a big help in reducing anxiety about possible side effects. I am extremely fortunate to have experienced very few side effects--very mild upset stomach and diahrea. But this blog prepared me for many possibilites. I stocked up my office with crackers, juice, ginger ale, real Coke, etc. to be prepared for nausea. It looked like a grocery store! As has been mentioned before, newbies should not be put off by reading about problems here. People are more likely to take the time to post when they are seeking answers to problems. The wealth of information and general friendliness on this site, has made the journey easier. (Comment this)
Henley, I too was diagnosed with PCOS several years ago. The common thread seems to be the insulin resistance.
NYTimes - any news on the article that was being written? (Comment this)
I wish I could use meds similar to yours -- probably not as much. I cannot take metformin -- I feel either very drunk or half dead from deep deep sleep -- go figure, noone believes me. I cannot take Amaryl because I have a sulfa allergy. The best I can do is Starlix which is similar to Amaryl but won't cause allergic reaction. It is very mild, and lasts only about 20min. I use it postprandial. I am now testing a 5pen (my 3rd pen of the day - 10/10/5) late night. It is very difficult to time this right, and the danger to me is a locked up stomach. Seems to be the best sollution yet. Tried other insulins with lots and lots of pain. The endo has said, let her go until her dawn #s go to 200. They do not -- usually 150-168. I've had to return to super exercise with weights and resistance. As I read your notes Tony, I am convinced that I have the same kind of diabetes behavior as you, and I'm hoping that your successes will help me find a way.
QUESTION about STRESS:
I am noticing that stress will drastically increase my numbers. No food for 7 hours, too much exercise, and a reading of 225! When I'm sick all 200s. Antibiotics and I go into the 300s! Byetta makes it impossible for me to do another insulin because of the stomach pain. Kindof' a problem Any thoughts? (Comment this)
No news on the article however I did get a follow-on question from the reporter early last week...
An HbA1C of 5.0-6.9 puts a person in between the top rung of bormal (5.0) to the bottom rung of diabetes (7.0). The trouble with the number is that once you start treating a person with any of the classes of bg-altering drugs then their A1C can no long be measured on the 5.0-6.9 scale... but no the number is artificially lowered.
SO...if a person becomes a diabetic with a 7.0 and successfully treats themselves...thus lowering their number down to 5.5...are they no longer a diabetic.? Of course not... Once a diabetic...always a diabetic..
John (Comment this)
I would suggest checking with your doctor re your sulfa drug allergy. I'm allergic to sulfa also but have no trouble with Amaryl.
John (Comment this)
Has anyone seen any thing on web that discusses way to determine proper size? I am not having any real side effects worth mentioning. Before Byetta, I was out of control with 200-350BS range. Now in 3rd week, I am 180-250BS range. With no side effects, could needle(5mm)be problem? I am overweight with a beer belly (I have never drink Beer)but not obese. 5'11" 223lb.
LOOKING FOR A REASON ON LACK OF PROGRESS
I keep my carbs around 60-80 a day. I eat at 9am, 12pm, and 5:30pm Snacks at 3pm and 9pm. Has anyone seen a difference in reading based on when they ate? Do we agree that a byetta shot has an effective life of 6 hours? So, is byetta only covering meals? Why has those that took shot after a meal seen lows. What if you took a shot at say 9am and didn't eat breakfast or lunch until 2pm, when would low occur, if one did?
How does the time you eat affect your #s? What about someone that eats at 6am, 12pm and 8pm? There must be a difference between them and me at my eating times.
Thank you for your assistance.
(Comment this)
here's a paragraph I found on the web that is a little more than the usua' "consult with your doctor"...
>>>In general, longer needles are used by patients with more body fat at the injection site. Shorter needles are used by people with less body fat at the injection site. This is to ensure that the insulin is injected into the subcutaneous tissue below the fat layer but above the muscle layer. The type of injection technique used can also affect the needle length required. Longer needles are used when patients pinch the skin and shorter needles when they do not.
(from The Pharmaceutical Journal)
On your question of "how long does Byetta last?" I think you need to consider the 2 things Byetta does...1) In non-diabetics there's a big pancreas release of insulin once the body detects glucose.. Diabetics do not have this reaction... Byetta starts this sequence in the presence of elevated glucose... and 2) Byetta causes food to stay in the stomach longer....giving that full feeling .
John
John (Comment this)
Yes...stress & illness can definitely raise your bg's...
Sometimes A LOT.
John (Comment this)
I'm using 10 mg once a day but the ... ummm ... 'body exhalations' are terrible. I am burping up these long, disgusting streams of fetid air, which smells terrible and tastes just as bad - and they last all day, every day. I'm also farting like mad, too. And I do not mean normal little poots - I mean these longgggggg, loud, traffic-stopping, ghastly Farts with a capital F! It does not matter what I eat, or don't eat, when I eat, what other drugs I'm taking or not - from the moment I wake up until I go to sleep, I am burping and farting nonstop. I even do all this in my sleep! I swear, I'm a Gas Bag Hag!
I use Lantus and regular insulin, and heart meds along with pain mgmt meds. I exercise, stay active in my commuunity and work at the museum; I'm an anthropologist. Even though Byetta has helped significantly, if this gastrointestinal problem does not go away or at least become manageable, I will have to stop taking Gilly Juice. I can't work with the public AND be the Gas Bag Hag! (Comment this)
Maybe you could tell us about your diet.. favorite foods etc.
John (Comment this)
This morning # was 145 (OUCH) and breakfast was 1/2 grapefruit, 3 slices thin bacon, tomatoes and WW toast with 1 t. margarine. Before lunch was 68 (never had that before), one hour later 136 and 2 hours later 98. My lunch was eggbeaters, tomatoes, spiral ham and WW toast. I believe I could handle the morning numbers if I got low ones like this during the day. I am wondering if it would matter if I took the other 500 mg. metformin at night instead of in the a.m.??? The Byetta handles my after meals just fine. I might try that and see how it would be taking 1,000 metformin at night. This morning thing makes me angry!! (Comment this)
It doesn't appear that your diet is the culprit here... You're not taking any other meds are you?
John (Comment this)
It looks like gas... I mean GAS is a common side effect of Gemfibrizol.
Have you tried any anit-gas remedies?
John (Comment this)
Please let us know how the 2 weeks goes...
Good luck,
John (Comment this)
TERRY, soy is a great producer of GAS big time. How long have you been using the soy. Also there is a product called BEANO and it absorbs (or is suppose to) the GAS in the system. I used to eat soy but had to stop because of all the problems it caused. Just a thought. (Comment this)
I have just started on Byetta,2-22-2006, and do not use any other oral medications since the previous two med's, Glucophage and Actos, cause intestinal problems and weight gain. My Dr. asked me if I wanted to try it and I told him anything is better then gaining and losing the same 9 lbs. My fasting sugar is 140 in the morning, and after meals has been 120 since starting the medication. Before Byetta was a horror. I even gave up testing becuase no matter what diet I followed I gained weight due to hunger,my bs was all over the map. I am on other medications but they are maintance drugs for thyroid(cytomel and sythroid),allergies(singular), and estrogen therapy due to a hysterectomy from advanced PCOS. My M.D. even gave me a diet pill(phentermine,sp) to assist with the hunger that was like eating candy since ACTOS cause hunger.
I hope I did not give too much information but I just wanted to give background to help with response.
Questions:
1.I was wandering is it essential to take an oral medication.
2.Is that a side effect of Byetta that is not listed in their patient information packet?
3.Can I re-ignite my hope of losing weight?
I have no illusion of being a size 2 just a size 14 or about 75 lbs.
I am thrilled so far with the results and have not experienced any side effects to speak of. I did heed my doctors advice and cut my portions in 1/2 before eating it. It works like a charm and I have learned is a short period of time that even what is considered a normal size portion is too much for me. I have tempted fate in the last day and ended up tired and not feeling well. So I have decided on little meals thru out the day and limiting carbs.Is this a good plan
I apoligze for this long entry but as I write I have thought of more questions than answers.
Marg from Il.
(Comment this)
I have been on it 2months and have lost 20 lbs so you will lose weight if you are cutting your intake and exercising if you can.
Just make sure that you take any other meds at least 1 hr before your morning shot so that you have time to asborb the meds that you need to take.
If you read back on the blog in the archives you will see other side effects people got that may not have been listed in the literature we received from the drug company and you will also learn from others what to do about them,
Good Luck to you and keep us posted on how you are making out. (Comment this)
The question of which to use, Symalin or Byetta, depends on your beta cells, not really your insulin use. Using byetta with insulin is considered off label since it hasn't been specifically tested, but it works just great as long as you have beta cells to produce insulin. Symalin is used by people who no longer have beta cells to be stimulated. I choose to use insulin rather than oral meds because insulin has far fewer potential side effects, generally just the chance of lows and weight gain. That certainly can't be said for the multitude of oral meds on the market. Pat in Idaho (Comment this)
The ONLY new thing in my life is the Byetta and although I love the low sugars, I do NOT love the horrid gas. Nothing works to stop it either! I kid you not - I am a walking talking bag of gas anymore! And I'm convinced it's not from anything but the Byetta. I've taken all the other stuff for years without any side effects at all and within a week of injecting 5 mg of Byetta twice daily, I started exhaling horrible smelling gas out of dang near every orifice of my body. I fully expect my EARS to start tooting next!
I've tried switching the Byetta to night time but it doesn't matter. I've never had a problem with any med, ever ... so I guess it's just my time to finally have found one that has a bad enough side effect for me to stop using it. I simply cannot go around whistlin' like a toxic Dixie. Can you just see the museum patrons running from me? HeeHee! If I could run from MYSELF right now, I would!
Thanks for all the attempts to help out but I think going off the drug for two weeks to see if the gas stops is my best bet. I'll just have to go back on the ketogenic diet for a while, I suppose. My endo will work with me - yet again - to try and figure this out. I was SO hoping Byetta was the final solution - I've never felt better, or looked better but no one could live with this gas like I've been doing. My poor teen son says he is going to have to put a clothes pin on his nose to live with me! LOLOL (Comment this)
Linda in TN Lorraine and I are going to try to ignore that morning # and not let it drive us crazy. We keep trying differant things to get it down. And will keep trying but try not to let it get you down We are trying to remind ourselves its just one period.of the day. Hang in there. (Comment this)
I've been on Byette since Jan 16 and have done well.
Morning readings are still high 175-214. But I feel much better. I'm now at the 10 dose and except for the original nausea have tolerated it well. I've lost about 15 lbs.
My question is has anyone else had a hive at the injection site? This only recently started. The last few times with the 5 and now with the 10. the site itches for a couple hours then goes away. I've tried wiping the site afterwards and keeping the injection site clean. Any help would be appreciated. Thanks (Comment this)
Will the "fullness" feeling start when I get to 10mg and also, is that when I should notice some weight loss
Has anyone else experienced the "not full" on 5mg but noticed it more on 10mg? (Comment this)
How the side effects will affect you is hard to predict. I would not expect that you would need to plan time off.
My worst night was the night BEFORE I started the shots. I got myself all spooked about needles...shots..lizards.. will it not work etc... I made myself nauseous...and I NEVER get nauseous.
Next day I took the shot...no side effects and I noticed my numbers were better with 1 hour.
That was 1/1 and it's been smooth ever since.
BUT, test often while you're getting used to it and watch out for lows..
Do not take a shot once you start eating or afterwards... I tried it... BIG mistake...extreme lows..
Good luck.!!
John (Comment this)
(Comment this)
I will repeat Johns advice test often the first few weeks and watch for lows. lows can bring on the nausea. So does over eating. Keep in touch with us. If any of the side effects do happen we will gladly help you with them. Good Luck and Health. Welcome to the blog and the Gilly Club[byetta users] (Comment this)
Dave in MD (dg_mooreATcomcastDOTnet) (Comment this)
Hello Ellen, Ditto to John, Danielle and Dave's post to you. Welcome to the blog and soon you'll be a bonafide spitkin! Many more spitkins do better with it than those with really bad ititial reactions. You could always carry some ginger altoids or gingerale or seabands with you just in case and I find gas-X chewable tablets really helped me when the belching and belly heaviness started I chewed a couple of them and felt better. I never did vomit (came close only once), mostly had mild nausea or queasiness, belching and chills--still have the chills daily. All of this was a bit uncomfortable but I could still work and such, I certainly wasn't bedridden or anything from it. I think the spitkins who are actually vomiting a lot are just a very few. I occasionally have a runny nose with it, and of course these pesky welts, (but that is a small and rare group of us apparently and we don't know why that is happening to us). All in all your odds are much better for a positive experience rather than a negative one. Those 3 gave you some good advice and all gillyspitkins wish you the very best. (Comment this)
Thanks for your great words of encouagement. I am to mentally make myself feel full. Tonight I went to dinner with some friends..alittle to early for me..4pm--ordered antipasta salad and zuccheni strips--(I know I spelled it wrong)..I ate a quarter of the salad and 2strips of zuccheni with 1 slice of bread..I took the spit about 15minutes before the meal..I felt somewhat full..when I got home 30min. after dinner, my bs was 99---really good for me. ... about an hour later I took my metformin and Amaryl .since then, I have had 2 pieces of dried fruit, and soon I will eat a few tables of cottage cheese or yogart before I go to bed to hopefully prevent the dawn dump...I guess what I am trying to say is that I am psyching myself into feeling full....my bs is now 187
Hopefully when I start the 10mg, it will make me fill full and loose some weight.
Congrats on your great loss...you are doing great.....I am sooooo jealous... (Comment this)