Byetta 18: Discussion Forum for the week of April 9
This is the 10th in a series of weekly Byetta Discussion Forums, and 44th Discussion Forum at Diabetes.Blog.com. It is now closed to new comments. There is a listing of other Byetta Discussion Forums at a separate webpage: List of Byetta Forums.
By the way, you'll also find some information about Byetta at other Discussion Forums, including traveling with diabetes, odds'n'ends and research about meds.
Also, you can still read the earlier comments (at the earlier weekly and 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
Attention- Byetta users. I am a freelance journalist and frequently write for the Chicago Tribune and also have an upcoming health related feature in the New York Times. I started taking Byetta three months ago with great results. I am interested in writing about Byetta, particularly focusing on patients, doctors and their reactions. If you would like to share your experience with me please let me know by e-mail at SSB1173@aol.com. We can correspond by email and then set up a phone interview. Thanks so much.
Susan Berger (Comment this)
May today find you all side effect free and on your way to only the good gilly has to offer.
John,Ron,Warren and Tim:Your post are still some of the best information and advice we get on the blog!
My byetta Babes:
Love and good health to you all. Have a Great Gilly Day.My blood work is next week and endo visit the following week,keep your fingers and toes crossed for me.Because of all the stress and illness I am afraid She will think Gilly is not working anymore.But I will take Cindylou advice and bring my list of mishaps and misfortunes with me.Have a healthy and happy day everyone I'll catch up tonight.
Warren,new blog so I guess its time for a new injection list.lol Good health everyone (Comment this)
Good Morning Daniel, I sure am sorry this is happening to you. I don't really recall reading that happening to anyone else, especially considering you have been a Byetta patient for so long now. You may want to use the BLOG SEARCH and see if you get any results of anyone else experiencing anything like you are. I was wondering if you have been in to your Doctor for a complete bloodwork to see just exactly what is going on with your body? Your autoimmune system? (Comment this)
(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)It sounds like byetta is working. You may be one of the ones who loses inchs first[your cloths will start feeling looser. Others have said the weight lose was slow in the begining. Give it a week or two to kick in hopefully you will start to notice your eating less and the weight will begin to go down. give it time,Corina, it is a miricle drug for those of us it works for. we are here for you. Don'nt get discouraged.Post if you do. We will help keep you going. YOU WILL SUCCEED!! (Comment this)
Warren is exactly right, change one medicine at a time. I need to add one thing: know what each med does in your body. Avandia is like Actos in that it decreases insulin resistance. Glyburide is like the sulfonylureas(Glucotrol etc.) in that it stimulates the pancreas to deliver insulin. How did I find this out? Google. Just type in the name of the med and usually choose the first URL.
Now, as to dropping one of the meds. In the Byetta trials, sulfonylureas were associated with lows when used with B.
So, my endo and many others(as reported on this blog) had our sulfonylureas decreased in half when starting(that would be the Glyburide for you). Also, as time went on, these were the first to be dropped. Your Dr. should have warned you about lows when using B. with an insulin(or pancreatic) stimulant. One of the best things about Byetta is that it stimulates the pancreas only THE RIGHT AMOUNT when you have eaten carbs, so you don't get lows unless your other meds cause them. I went from 1/2 dose to 1/4 dose of sulfonylurea after a month on B. the off of it after another month. Then the same thing on the Actos(similar to the Avandia) until now after 6 months I am only taking Metformin (500 mg) with the ten pen of Byetta. Others have done the same gradual lessening of meds as time has gone by. Also, for me, due to the weight loss I had to cut my blood pressure med dose in half. If you don't have a diabetes educator, in addition to this blog, read all you can at Diabetes Monitor(above) and use your search engine(if it isn't Google). Good luck!! (Comment this)
I don't think it can be stressed enough that Byetta is a helper, not a magic cure-all. We have to do our part, too: eat the right foods, in the right amounts, and exercise regularly.
I go in for blood work on Tuesday, and then see my endo the next week. I'm really looking forward to finding out what's happened to my A1c.
(Comment this)
Beth and Danielle: Keep us posted on your visits with the endos. I love to see the results that people are having with their numbers. I am still side effect free on the 10. Have been on it for almost a week. Appetite suppression is back like it was when I first started on the 5. After three months on the 5 pen most of the appetite suppression was gone, and my fibromyalgia kicked back in where I had been on a three month pain free period. I hope the 10 takes over and helps me keep pain free again. My arthritist was also much better after byetta so lets hope it stays that way. Have a great week everyone. (Comment this)
Teresa (Comment this)
Here are a couple things to keep in mind about Byetta...
In the clinical trials, Byetta caused nausea on 44% of the patients.
In those same trials it caused nausea 18% of the time in the patients taking the placebo.
Several people here have dealt with the constipation through a variety of store remedies.
As to why Byetta causes constipation, I would suggest that it's because Byetta slows food moving through the patients digestive system.
I've been on Byetta since 1/1/06 without experiencing the side effects... I've lost about 20 pounds and haven't felt this good in years.
As to the "brain fog" I would suggest there's something at work here that may not be related to your diabetes...you should talk to your doctor about that one.
John (Comment this)
I'm having a real issue with Big Brother at the moment. I seem to be hungry all of the time! This has lasted off and on for 2 weeks. It started when I returned home from a vacation where the spit was not with me (a faux pas). I began a new pen upon my return. Lots of carb cravings that week that I was able to resist, mostly. In the last week, resistance is futile. I really stumbled today, when I ate, um, malted milk balls. My BG, which is usually ok, soared to 500. YEOW. Fortunately I was able to inject some humulin ( I am also on lantus). Yes, I was anxious, but in a couple of hours I was back down to 140s and two hous later, before dinner, hit a low of 76. At this point, I changed pens (I just picked up a new one, a week early, yesterday). So far, it seems to be the same juice, had a nice size dinner, still just as hungry. I've had these great swings today, its frustrating. OH yeah, I'm one of the fibromyalgic ones, and this hasn't been a good week in that category. I long for the full fealing and even the nausea if it'll get'her done. Any advice? (Comment this)
4 Months on the spit today. Feel great. Blood sugars perfect. Happy camper.
(Comment this)
Another win with the Lizard.
John (Comment this)
Thank you for sharing your story. You are an insperation to us all. I do drink my coffee black, but today for some odd reason my bg dropped 16 pts. after drinking a cup, and without medication. You just never know.
Tereas,
I have been a diabetic for 16 years, as far back as I can remember I had low energy, brain fog, and a horrible time trying to lose weight. The doctors would do the standard thyroid test and tell me its normal and their was nothing wrong with me. Last year I went to a womans wellness center, they started my on thyroid medication and it made a huge difference for me. Unfortunately, because my bgs were still high I wasn't able to lose weight. I was working out and eatting right, but my weight wouldn't budge and my a1c was going up. I saw new doctor in March who recommended that I start on Byetta. Between the thyroid medication and Byetta I can't remember feeling this great and in the five weeks of being on Byetta I have lost 12 pounds. I have been very blessed not to have had any severe side effects. I have different ones at different times such as chills, stiff neck, sensitive teeth,and fatigue, but overall having better control of
my bg and the weight loss has been well worth it. I say give it your best shot! (Comment this)
Jackie: My advice would be to check your bg before you take your shot. If I'm high when I take the spit, I have terrible lows. John has described the reason for this well...you can do a web search and check out what he had to say...that's better than me interpreting it second hand :) My other advice is to keep glucose tablets nearby until you get yourself more stable. (Comment this)
To all who are "lurking" on the Byetta fringe, I say Give it a chance! Most of us started with the same anxieties and fears. Believe me the rewards are worth it. Although a few people have experienced rather strong side effects, they are very few. Many, like myself have had mild problems
and more than half suffer no side effects at all. DON'T MISS THIS OPPORTUNITY FOR FEAR OF SIDE EFFECTS!
KITZE-- I would advise you NOT to move your 2000 Metformin
to bedtime without speaking to your doctor. I would also advise you not to increase your dose. Remember that 2500 mg
is the max daily dose and at that level some complications
are a real risk. Type 2 diabetes is a progressive disease.
Left untreated it gets worse. It overtakes whatever treatments we have tried. You may need to use an "off label" approach to you fight. I am still using Lantus as a
basal support for my Betta and Metformin. These combinations seem to be working for many of us. However, close monitoring by your doctor is needed if you decide to try it. Good Luck.
PATRICIA-- Just a brief comment... Infections can send your blood sugar readings into orbit for some time after they clear up. This is not unusual at all. (Comment this)
You have no idea what a nice feeling and good start to the day you give me. When I turn on the computor your good morning Danielle is the first thing to greet me. Glad to hear Gilly woke up and has your hunger under control again. Have a great day!You deserve each day to be great with all the help you extend on the blog to us all. (Comment this)
Lynn,how is byetta treating you these days?Cindylou, great report,you go girl!Shari and "The Island girls"see you on the beach later. Have a great one. (Comment this)
My mother in law started using Byetta last Thursday.. Doing well so far, 1 light bout of nausea but ginger ale put an end to that.
So far, instead of 200-260's she's having 2 hr numbers in the 120-135 range...and was able to drop the Glipizide XL 5mg..
Every day above ground is a good day.!!
Take care,
John (Comment this)
I recently started on Byetta 5, for the second time, about a week and a half ago. I first started Byetta in June 2005. I did the usual 5 for a month and then 10 for 3 1/2 months. I had some nausea, but the most problematic side effect was a very groggy, tired feeling. I had a fuzzy head and drugged out feeling. I thought it would go away, but it never did, so I decided to stop taking it. That was in Sept. or Oct. of 2005. But the tiredness and fuzzy head never really went away.
About 3 1/2 weeks ago I found out I had really low ferritin (iron stores), which explains the fatique and fuzzy head, and I started taking Trinsicon (iron supplement). After this discovery I asked my Endo about trying Byetta again.
This time around I haven't had any nausea, but I am very sleepy and I seem to have some muscle weakness. Although the muscle weakness could be from the the ferritin and may go away once my levels return to normal. I do hope the sleepiness goes away because Byetta works wonderful for my BS control and my weight. When I took Byetta last year it had stopped working on my appetite by the time I stopped taking it. If that happens this time, it would still be worth taking just for the BS control.
I've seen a lot of people complain about constipation. The first time around I had it too, but not this time, even though I'm taking an iron supplement, which also causes constipation. I eat a gnu foods food bar everyday that has 12 grams of fiber in it. As long as I eat one of these a day, I have no problems.
I'm happy to be back on the spit and happy to see so many people on this blog sharing information and supporting each other. Diabetes can be a very difficult disease to manage. Having support makes managing it a whole lot easier than doing it alone.
Take care everyone,
Lisa B (Comment this)
Tim Slim (Comment this)
Yes it is possible for us to "overpower" the satiety experienced through Byetta. I've noticed that it's easy for me to eat more and push the satiety point up. The weight loss stops and BGs increase.
At that point, I climb back on the horse and really listen to, or "become one" with, my body. At that point, I can again distinguish between head hunger and stomach hunger. Byetta satiety again kicks in after a couple of days and I'm off to the races again.
When your eating pattern seems to be picking up again, step back from the mental desire to eat and ask "am I really hungry?". Take your BG, if it's not low then try to analyze your "hunger". Is it psyco-physiological response to stress or could it even be as simple as the evening munchies while sitting in front of the TV?
This approach has helped me tremendously because yes...the initial response to Byetta does wear off. I've had to fight each of the situations mentioned above.
Just trying to help,
Tim Slim (Comment this)
I feel your pain, one of the side effects of Avandia is weight gain. I strugggled for years on Avandia with the extra weight and tried everything to lose and could not have any real success and then my doctor asked me to try Byetta. The lizard is now my best friend. My bg's have stabalized, my A1c is great (5.2) and I have lost over 20 pounds, all this in 2 1/2 months. I have been blessed with no major side effects. Everyone is different, you may get some side effects and them again you may not, the risk is well worth the reward. Give it a try, we would welcone you into the club. (Comment this)
Be cautious, Missy. John has said that the BG will crash only if you are at 600, or near that number, when you do the spit. However, Cindylou, Marlys, and I have found that this can occur with a Bg of 200 or even less at the time of injection. Tim Slim has mentioned this as well, just recently, so you may have remembered it as John who had posted it. John has not seemed to share our experiences or our conclusions in regard to this issue. This plunging BG may occur within one half hour or less. It seems to be a similar phenomenum as occurs when eating and then doing the spit. (Comment this)
to the doctor 4-11 hope everyting goes well (Comment this)
(Comment this)
I would agree, but with each person, their response to medications may be different than another person's. Quite a few of us are medicating differently than the clinical trials were performed. Additionally, there may be other medications, that are not for diabetes, that may affect our sensitivity to Byetta.
Therefore, it's not a case of one of us being less or more accurate in our assessments, but, just a difference of reaction. John's comment of BG at 600 causing a crash after Byetta injection, is totally accurate within the medication/condition statement of his assessment. However, I think that it is always best to control your BG and keep it as close to normal (90-110) pre-meal pre-injection.
It is good long term complication practice to keep your BGs certainly 150 or below (130 or below is even better but difficult). Thus, just by doing our part, along with our endo, we limit adverse reactions by practicing concientious behaviour. (Comment this)
Most of us did not experience weight loss until we had our BGs controlled to the point that we were able to decrease/eliminate some oral meds. Avandia & Actos, especially in combination with insulin, causes fluid retention and/or fat weight gain.
First work on normalizing BGs with Byetta, then work on limiting food intake to keep the fullness feeling perpetually (after eating fullness feeling). Then, cooperate with your Endocrinologist and other physicians to decrease your oral meds to the point of control.
Finally, exercise & diet are very necessary components to diabetes control. I have lost over 50 lbs and continue to normalize BGs by walking 30-45 minutes twice a day. It's amazing how a fat-burning level of exercise will decrease BGs. Fat-burning exercise is lower than cardio (60-70% vs 70%-85% heart rate). The higher cardio rate will cause a cortisol release and stimulate liver release of glycogen thereby raising the BG. So, a light walk at least once a day for 30 minutes or more will do wonders for BG control. (Comment this)
There is however something I would like to know. When I started byetta in October everything was fine, then about a month ago I started to notice that when I would lay down I could feel my heart beating in my pulse points, especially in my neck a upper chest. It wasn't that bothersome becaue if I shifted positions it would stop but it has gotten increasingly stronger and happens if I am sitting in the recliner and when I go to bed. It doesn't seem to bother me during the day and when I am busy but it is starting to become really annoying. Does anyone else have this problem I know if I mention it to my cardiologist he will want to do a heart catherization which I am deathly afraid to have done. I was just wondering if anyone else was experiencing this problem? My pulse has also gone from the high 50s and low 60s to around 70 but my blood pressure is holding steady. So if anyone has any insight into this I would be very greatful. Thanks (Comment this)
Just so that you want think that I am "preaching", I am on metformin 1000mg 2x daily, insulin pump at 27 units basal daily, Tricor (triglycerides) and fosinipril (BP control). Pre-Byetta, it was ACTOS 45 mg, metformin 1000mg 2x daily, insulin pump at 98 units basal daily, Tricor (triglycerides) and fosinipril (BP control).
I did not start weight loss until I was able to discontinue Actos and decrease my insulin basal but not sacrifice BG control. (Comment this)
I do walk 2 miles a day and try very hard to do the "right stuff" but I have been just very frustrated with my body i guess. I go back to my endo on May 22 and she said we will see about cutting the Actos in half but I am hoping to be able to stop it altogether. I did not mention but I also have to take Lasic as well for the fluid retention. But I was unaware that Lactos could cause actual fat gain. I have gained 30 lbs since I have been on it. I am just very excited about the information I have gathered. I am 38yrs old and just feel too young to feel this bad. Thank for all the imput I can get, and I can take the "preaching" LOL! Lin (Comment this)
I have about the same background, except I'm 42 and male on a pump instead of syringe for insulin basal. You will need to keep a close watch on your BGs through testing a minimum of 4 times daily (6-8 is better but difficult I know). As you adjust to new diet, BG control, and Byetta use, you will run an increased risk of hypoglycemia especially with the insulin use.
You must check with your endo and run everything by him, but this is my insulin/Byetta interaction experience. I found that my insulin use at night for combatting the pre-dawn (morning) BG rise to remain the same pre & post Byetta. However, be sure to check your BGs throughout the day. Byetta changes your insulin sensitivity for up to 6 hours post-injection. This means that from 7am (assuming 7am injection) through 1 pm (post-lunch) your 70/30 injection will be much more effective. Thus your BGs may decrease unexpectedly. YOU WILL NEED TO KEEP AN EYE ON DAILY BGs ESPECIALLY. Be prepared to adjust your morning 70/30 injection with your endo's help.
Above all, be increasingly aware of hypoglycemia and carry some glucagon or quick carb pills with you just in case. (Comment this)
I am a male age 42 and was diagnosed at age 31. Diet/exercise worked until age 38. At that point, I was hospitalized and put on metformin/Actos/Insulin and weighed 210 lbs. From Aug 2002 until July 2005, I had gained over 80 lbs up to 290 lbs. On Actos, I was unable to control or slow my weight gain even with good eating/exercise habits. The first 2 weeks of Byetta, no weight loss. Endo and I discontinued Actos and I started losing, more slowly than some due to insulin use, but I was losing.
As an experiment 1.5 months later, and 20 lbs lighter, I restarted Actos for 1 week and gained 5 lbs while feeling miserable. Discontinued Actos, felt better and started losing weight again. I am a big opponent of Actos. That particular medicine is terrible and related to congestive heart failue (heart failure due to fluid build-up putting pressure on the heart).
Don't be alarmed, just relating my experiences. There's no rush to change medicine, afterall, we need to keep in mind at our ages, that we are trying to minimize long-term diabetes complications. (Comment this)
You say you're taking Actos 80's... I believe they only go up to 45's..
The weight loss begins at about the same time the appetite supression sets in. For me it was immediate...but others here have a delayed response...days...or weeks..
Shari,
I may've misstated the bg of 600 business.. What I meant is that if a person already has a bg of 600 then taking a Byetta injection will cause an immediate Insulin first response...no waiting for bg's to rise.
Matter of fact...I suspect it's fairly easy to crash from 200's... That's pretty much what happens when a person takes a shot during or after a meal..
Happened to me a while back...pretty scary and something I sure won't be doing again.
Take care,
John
(Comment this)