Diabetes.Blog.com

1 - Thank you, Dr., for this new forum. (Comment this)

2 - I got my first pen last week. It was free to me because my doctor gave me a coupon. The pharmacist told me without the coupon it would be $220, which is about $70 higher than my doctor said it would be. I am a veteran and I get all of my other meds from the VA at $7 for each perscription, which is hard to beat. But, the VA won't pay for Byetta. I have medicare, with a Blue Cross/Blue Shield Plan 65. Will medicare or BC/BS pay for part or all of the Byetta?

Gene (Comment this)

3 - Gene, do you have prescription coverage under your BC/BS plan now? Call them and ask, if they say no, call Amylin and ask for help. Remember too a lot of these plans will be changing when the Medicare Drug Benefit goes into effect.

Helen (Comment this)

4 - Report on Medicool Special Protecall Blue Holder for Byetta Pen: I was on the road for 14 hours and the Blue Pen Holder was at 36-46 for almost 8 hours. It is recommended for 8 hours and that is what it does. Cost: $54.00 with mailing and tax in California. You need to freeze the Blue Pen Holder for 8 hours, let stand for 10 minutes outside the carrier. Then you are set to go. Very handy bag designed for carrying over shoulder and many pockets for supplies. You have to look for the Byetta designed carrier and they don't exactly make it to easy. They must have just added this carrier. You can find it on the Home Page as a short note, which is clickable, indicating a special Protectall Blue Holder. Conclusion: Good for short hauls, not reliable beyond those excursions. Expensive and not something I would recommend since you can get more distance from home made devices. But I will use for going to dinner and out for the evening. John Dodson (Comment this)

5 - The Medicare Prescription Drug benefit is not going to be a big improvement for most people. I hate to burst your bubble but they are only required to provide two drugs in each class of medication and in many cases the drugs that have been on the lists I have seen are giant steps back in treatment because they are generic. There will be major treatment changes to comply with formularies and it will be a nightmare for everyone. (Comment this)

6 - I started Byetta 5 mg yesterday. I will do it once a day for a week and up to the 2 times daily next weekend because of what I have read on this blog. Have had some belching, and a slight headache but otherwise nothing I can't handle. I have taken the Pepcid before taking the shot, which has probably helped.
I have been on Avandia for 1 1/2 years and Glucophage for about a year. I quit the Avandia a week ago and have lost at least .5 pounds a day. My assumption is that it is water. I wonder if there is a connection to stopping the Avandia and the weight loss, maybe not so much the Byetta. I have been working with a trainer for about a year to help with weight loss and BG, know what portion size should be and what I should be eating. Follow a pretty strict regimen. When I started gaining weight instead of losing, it was time to call the doctor and get some answers as to why no loss.
Just happened to be at the Diabetes Center for my yearly check-in with them ane when I was up to the highest I have ever been, I guess I kind of cried on their shoulders. They mentioned the Byetta and the rest is history. Called the Doctor the next morning and by the next day, had the goods in my hands.
It has been a real help to me to read all of the comments and encouraging words here. Thanks for being there. (Comment this)

7 - Why did it post my comments twice? I didn't submit twice. (Comment this)

8 - Also, I know that this is supposed to be for long term users of Byetta, however, I found that I could not comment on the other blog. (Comment this)

9 - Sept. blog is closed. See link to side for new blog for October. We voted to do that to try and keep it a little cleaner. all the old blog are archived and liked if you want to read them. (Comment this)

10 - Thanks. (Comment this)

11 - What is the recommended length of time you should be on Byetta? Is anyone afraid of long term use? (Comment this)

12 - Lisa,

I would say you stay on Byetta as long as your MD says you need it or another drug comes out that is superior. You will probably switch to the LAR version (once a week) when that is finally approved. (Comment this)

13 - Charlie,
Thank you for responding. (Comment this)

14 - Aspirin wouldn't make it through the FDA today. If something comes out that says we should be worried, then we strt worrying. I have read everything I could find and made my decision I am staying on this drug until they pry it out of my fingers but I would like that LAR. I went shopping for the first time in a very long time in the regular ladies dress section plus I am off two B/P meds and we will be checking my cholesterol on October 24. Want to make some bets that my LDL is finally below 121? (Comment this)

15 - Hi all,

For what it is worth, I talked to my NP when I went to the Diabetic Clinic about 2 wks ago. Commented that I was worried that Byetta would end up being taken off the market in the future. He feels that will not happen because it contains a hormone that occurs naturally in our bodies. I know that I would be very upset if that happened. I tell all my diabetic friends about our diabetic clinic and especially about Byetta.

I too am enjoying smaller clothing sizes. I started in March at 30-32 and are now in some 22-24. I;m discovering a wardrobe I haven't seen in several years. I can't wait until I get to the point that I have to buy new clothes because I don't have anything in smaller sizes. I'm averaging about 6 1/2 pounds. That means about 80 pounds in a year. I would be happy with that. Byetta definitely
helps but you have to really be careful. (Comment this)

16 - Betty, my Medicare advantage insurance only has generic coverage right now. According to an article in the paper, they will be adding name brand medications because of the new Medicare drug benefit. So I will be better off. However, I am in CA where many new plans will be offered and there will be fierce competition.

As there is no substitute for byetta, I am anticipating coverage for it. Certainly insulin will be covered and it is not at present.

Helen (Comment this)

17 - Day 40

I've been on 10mcg for 10 days now. Had a little recurrance of the nausea for a couple of days but that seems to have gone. Feeling good, much more energy, still not starvin' like marvin! In fact, over the weekend, I had to remind myself after 6 hours (from breakfast) to eat something for lunch!! Portions are definitely smaller, too. Went to a buffet for a friend's birthday lunch and only ate 1 plate -- not even a fulle plate! LOVE IT!!!!!!!
Dora in Lansing :) (Comment this)

18 - Medicare and Medicare Subtitutes are not the same and yes the HMO's are much more competitive. And California is light years ahead of Alabama. but for example the antidepressants were generic Prozac and Elevil on the nursing Home list saw. i've spent the better part of the last 7 years getting people off Elevil. (Comment this)

19 - I just called Amylin to report the Hair Loss issue brought up on the Sept. Blog. I never had a chance to speak with a representative as they were all busy, they said they will call me back, but not yet. Has anyone else called in to report hair loss and if so, what were you told?

THanks, Dr. Bill for this Blog! (Comment this)

20 - For those who are suffering from side effects I offer my experience after 4 months. I had to deal with the nausea etc. for about 2 months, though 10 pen cycle. Now the last two months relatively free of side effects. Maybe two or three times a month at the most. The first two months I had every side effect reported on the blog. I am lucky I am retired and not sure I could have made it if I had a demanding job. But if you can keep on keeping on, it eventually goes away, almost.

A report from my Endo this morning is that he is beginning to test those who have finished 4 months for C-peptide and will report his findings as soon as he is done with all of us. He has 113 on Byette. He is wondering if we will see Beta cell growth. The 4th month is the end of the natural time of GLP-2 growing beta cell in babies. If anything significant happens I will report it here, you can count on that. As I said before, it does not yet appear what is going to happen with Byetta, we will find out along the way together. John Dodson (Comment this)

21 - Has anyone had any experience with a malfunctioning pen? I have followed the pen instructions faithfully. I checked to make sure it is squirting out the fluid, but I have had no side effects, no weight loss, nothing! I can't tell if my numbers are down because I haven't been keeping track the last five years.

I wonder if I am actually injecting any of the good stuff.

Gene (Comment this)

22 - I have been traveling with my Byetta pen in a container with one of those cold packs. Since we are at the beach I stuck this container down in my cooler and after a long day found it was soaked even the pen was wet with the melted ice water. It was still very cool but I am afraid of germs from it lying in water. Does anyone know if it would hurt me to go ahead and use it. When I took the cap off it appeared to be dry. Please respond as quickly as possible because I need to decide what I'm going to do. Thank you in advance. Leanne (Comment this)

23 - Leanne: I don't believe you will be in any problem. As long as you use a fresh needle and wipe the pen off really well. I did the same thing a while back and I just put in a new needle and it was fine. The only way you could get germs is if you left the needle on the pen when it was in the water. Otherwise the seal would keep them out. Let me know how you came out. I am not a health professional. John Dodson (Comment this)

24 - Leanne: He is correct. without reusing a needle that was exposed to a contaminate, you are not more prone to getting an infection with what you described. PS I am a healthcare person

But a "dain bramaged" nurse perhaps. I got home from a long, busy ER shift this weekend and tossed my travel kit into the freezer and trudged up to bed pooped.

Oops! Next morning found my pen in the freezer in the travel kit. Darn!!!! Solid ice! so into the trash! Sigh! (Comment this)

25 - For those wondering how to keep Byetta cold: I bought a stainless steel thermos at Goodwill. I put a few ice cubes in it and it kept the right temperature for 20 hrs. I could add more ice cubes as needed.

It's cumbersome to carry around but, hey, it works! (Comment this)

26 - Gene, respectfully, the only way you're going to tell if the Byetta is really working is to test your blood glucose on a consistant basis. I test 3-5 times a day, and I can show my doctor that it is, indeed, working like it should. (Comment this)

27 - Some messages from our sponsor:

(1) Please spend a few minutes at the Diabetes Monitor 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: How did you find this blog? Tell us about yourself! (3) Finally, if you like to answer polls, there are lots more at the Diabetes Monitor, at Polls. Many thanks, from Steph & Bill Quick

 

 (Comment this)

28 - Everyone on thyroid pills:

Please see discussion of possible interaction with Byetta, at odds'n'ends. (Comment this)

29 - I have been Byetta now for three days. I am on the 5mcg pen right now. I had a little nausea the first evening but very mild and now seem to not be having any at all. My BG levels were up around 220 in the morning before eating and I was taking 4mg of amaryl and 1500mg of metformin. After taking the Byetta for three days I have noticed a downward trend. My BGs douring the day are getting into the normal range and my fasting BGs have gone down belwo 200. I am looking forward to this drug helping control my BGs and hope it doesnt start making me nauseaus when I am switched to the 10mcg pen. I have also noticed a decrease in my appetite. If this medication doesnt work I will probably go to insullin. (Comment this)

30 - I have been using Byetta for 10 days now, and my fasting readings are averaging 200 whereas my readings 2 hours after supper are averaging 110. Any observations?

Gene (Comment this)

31 - As a Byetta user for almost three months I was hoping this would be for long term users...it would be comforting to hear from others who have been on longer than a few days...I also wonder when I have chest pains...is it the Byetta or something else. Will have an echocardio on Monday and a 24 halter monitor...will let you all know. (Comment this)

32 - Regina:
All of the "old timers" are still here. Some of the newbies post here out of confusion. The general consensus was that the long term forum is for Byetta users that have been on it for at least 2-3 months and longer.

As to the lack of blogging activity from the "old timers" on the long term board, it seems as if most of the problems and concerns are worked out during the first 2 to 3 months of Byetta use (if not even the first 3 weeks). Therefore, other than monitoring the monthly Byetta board, there's probably not that much for us to share other than what we post on the current monthly board in order to help those that are just starting. It was intense for the first month, the least I can do is be here to help out those just starting.

Additionally, I'm on a pump; I occasionally switch to Lantus when recreating with my sons; I'm interested in Symlin; and I test my blood sugar constantly. That means that I constantly peruse several of the blogs on this site. They all have helped me tremendously. It's gratifying to think that maybe I can help someone else too.

In summary, Regina, we're here for ya girl don't take silence to mean absence!!! (Comment this)

33 - Byetta scripts started to be reported on 6/3 and for the first week were 271. On 7/1, they were 2229. On 8/5 they were 5181 for the week. On 9/2 they were 8813 and for the reporting week on 9/23 they were 10,971.

The ramp up really started in July so the long timers will start hitting this Forum in another 2-4 weeks.

The weekly script numbers come out on Mondays. You can find them at: http://members.cox.net/mystock/Amylin.htm (Comment this)

34 - Charlie: OK, I admit it, I don't know what scripts are but I think it has something to do with Amylin. Since I am a stockholder now I figure I should know something about it. I also don't know much about stock since I just went into an office and purchased it. I have never been back to talk with the broker.

Regina, I have been on Byetta 4 months but don't have anything to add to the conversation right now. Although I have been running rather high numbers 190 and my Endo wants me to keep a close record over the weekend. If I learn anything I will post of the blog. So don't get discouraged as Tim said we are all still here and I check this blog daily. If I can help in anyway I want to try. I think Betty is also here and she is terrific. I always defer to her. But I am willing to put my 2 cents in and that is about what it is worth. But everything is valuable, even when we need correction, it means we are learning. I will be interested to know what you discover on Monday too. So even if you don't see me, figure I am here. I find the blog very valuable. John Dodson (Comment this)

35 - Hi all,

I was diagnosed with Type 2 in Jan. of 04’. I have been on Byetta for 3 ½ months. I had my A1C a couple of weeks ago and it went from 6.1 to 5.8 and I’ve lost about 30lbs. Great news.

I had extreme fatigue and a very drugged out feeling the first 8-10 weeks, but that has improved a lot. I still feel a lot of fatigue but I take a lot of medication that has side effects of, “may cause tiredness”. I take Topral and a diuretic for my blood pressure, Lipitor and 1000 Glucophage 2x a day. I have sleep apnea and I still have about 145lbs to lose, also. So as you can see, I have a lot of reasons for feeling tired. I had nausea the first 8 –10 weeks too. It was mild to moderate most of the time, with occasionally it being worse, but it was tolerable because it was only for short periods of time.

Over the past couple of weeks, my BS readings have been higher, especially my fasting BS. They have always run anywhere between the 110’s to 130’s but now, more times than not, they are running in the 150’s. Even my daytime BS are running a little higher than they have in the past. I’m not overeating, but I could probably improve on my food choices and I’m exercising most days. Why would my BS start going up? Especially after losing weight. I was hoping my BS would go down and I would need less medication after losing weight. Of course I still have a lot more weight to lose. Any ideas anyone?

Lisa in TN

 (Comment this)

36 - I am about a third of the way into my 3rd pen, so I don't qualify as an "old timer" yet. BUT I have a question. My numbers seemed to be more stable on 5mg than on 10mg. Did have a setback a few weeks ago after receiving a steroid shot (BG went to 346). On 10mg the numbers spike and drop more than the 5mg. Yes have mentioned it to my dr. - we are monitoring it. Have any of you seen this yourselves? (Comment this)

37 - John,

Scripts are prescriptions. What I was talking about above was the weekly number of new and renewed prescriptions as reported by IMS prescription data.

For instance, here is the data for the month of August:

#Scrips______Month of August 2005
New__________27,153__Pct Increase: 74.2%
Refills______ 3,872__Pct Increase: 331.8%
Total________31,025__Pct Increase: 88.6%

The point I was trying to make was that the number of new prescriptions is really taking off. I would not be surprised it they are 12,000 or so when they are reported on Monday.

Thus, the number of Newbies will continue to utilize the monthly Forums and the Byetta long-term use Forum will be gaining posters from July starters then August starters, etc. (Comment this)

38 - Thanks for the report, I had no idea. That is a really important point of reference. So we should see the blog get increasingly busy. My DCE and Endo were unaware of the blog, they will be checking it out this weekend. A good reference for patients who are starting Byetta. John Dodson (Comment this)

39 - Thanks for this forum. I had posted a while back on the September blog. Started Byetta on July 15th. I am going for my three month blood work on Monday and will see the Endo and get results on Friday.
I have had some up and down with blood sugar numbers, but seem to remain between 120 and 180 most of the time post prandial. Fasting remains higher. I am not losing any weight and in fact may have gained a couple of pounds--all in the belly according to my clothes. Prior to Byetta, I was on Metformin (Glucophage.) I stopped taking Glocotrol last year because I could not lose weight on it, but could when I went off it. I avoided most carbs. Now, with the Byetta I can eat bread, etc. but I think that may be pulling a little too much insulin into my blood stream, hence the weight gain. I am going to ask Endo for an insulin test. I'll let you know. Terrie (Comment this)

40 - I would like to know what others are paying for their pens. I am paying $220.

Also, does anyone know if the new Medicare prescription drug law will pay for any part of the pens' cost?

Thanks in advance for your responses.

Gene (Comment this)

41 - Gene, I went to a Training seminar this weekend that included an excellent lecture on Part D medicare. The forularies are supposed to be out in the next few weeks and it is looking better than /i originally tought. There is a good possibility that you may be able to choose a plan that will provide coverage but you will need to be bery careful in your choice of plan. When the plans come out I will help you because it will vary by state and it gets very complicated. But in it's simplist form there should be plans from about $14.00 a month to about $ 60.00 a month in each state. (Comment this)

42 - John Dodson--what is C-peptide? Thanks. Terrie (Comment this)

43 - Terrie, here is an answer which may give enough information. If more then get back to me:

Why get tested?
To monitor insulin production by the beta cells in the pancreas and to help determine the cause of hypoglycemia

When to get tested?
If you have type 1 or type 2 diabetes and your doctor wants to determine if you are producing enough of your own insulin, if you are insulin resistant, or if it is time to supplement oral medication with insulin injections; your doctor also may order a C-peptide test if you have documented hypoglycemia

Sample required?
A blood sample drawn from a vein in your arm and sometimes a 24-hour urine sample is taken (Comment this)

44 - Gene, I pay $186 a pen which is reimbursed by Blue Shield of California for 80% costing me in actual cash out of pocket $37.00. I will also be interested Betty to learn more from you at the time it is available. I am not sure that Medicare will cover as well as Blue Shield. But at any rate I am still interested in learning more. Blue Shield told me not to sign up for the new Medicare program, they take care of it. But this is California and they are doing things differently. (Comment this)

45 - If you have been told not to sign up by your carrier than their coverage has been certified as equal to or better than the Part D coverage and you should not do so. There will not be a penalty for signing up late should you lose that coverage as I understand it it. This is going to be the most confusing pln our government has ever rolled out and the biggest problem is that doughnut hole in the middle where there is no coverage but for many Americans it will be the first time they have had any drug coverage but the scary part is who is helping them make these decisions because I can barely wade through it and I do not consider myself the average consumer. (Comment this)

46 - John, I too have higher morning fastings than during the day, even after meals. I think I have what's called the "dawn phenomonem" where your liver dumps glucose into your system during the night. It is better with the Byetta than it was prebyetta, but still there, about 50 points up in the morning.

Im going to discuss taking my prandin (which he took me off of) before bed. I've also heard that apple cider vinegar before bed helps with that, but don't quote me, I've never tried it.

Had my first bout of nausea after being nausea free since the start (2 months). Dinner was a sandwich and an apple with peanut butter (very large scoop for dipping) Evidently, the fat is the big culprit. Those with nausea might want to go low fat for awhile until they adjust. (Comment this)

47 - Thank you Betty for your helpful insights. I am concerned about the confusion this program will cause. And of course for the people who get left out. As always it will be those who can least afford to be left out. John (Comment this)

48 - Lisa, I can definitely say that 1 or 2 glasses of red wine before bed helps with the dawn phenomenon. My GP strongly insisted that I consider starting this in the evening for cardio/cholesterol health. Pre-wine days, my morning levels ran about 130. Now they are running 85 - 95 in the mornings.

For the record, and with deference to the wine aficionados out there, drinking red wine is strictly medicinal. Due to the possibility of carbs, I drink and extremely "dry" burgundy or merlot. It's not my favorite flavor to say the least. (Comment this)

49 - It is my understanding that if you are retired and covered under your employer's Medicare supplement and they say their coverage has been certified as equal to or better than the Part D coverage and you stay with that plan and they later drop retiree coverage that you can then sign up for Part D.

Please let me know if I am wrong. (Comment this)

50 - Charlie as I understand it that is correct. And it is also correct that there should be at least one plan available in all States at about $ 14.00 a month. You're also going to get what you pay for though and that will be a very low restrictive plan. The problem is that doughnut hole where you have a deductable and then they pay 75% then you reach a ceiling and they pay nothing until you reach another ceiling and then they pay 95%. So your out of pocket can still be over $3000 a year not counting premiums. That is a lot of money for senior citizens on fixed Incomes. It is my understanding that CMS is supposed to have a web site available soon that will let you actually put your drugs into it and it will tell you which plan makes the most sense for you. All I can say is hang on it's going to be a bumpy ride. (Comment this)