Diabetes Monitor - Byetta — experiences from the blog

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Byetta — experiences from the blog

Update: On Feb 20, 2007, a press release announced new storage instructions have been approved for Byetta: refrigeration is no longer required after first use.

By Betty McGreevey RN, MN, CNS, CLNC, CS Gerontology

I decided to try and summarize what we know and what we think we know about this strange adventure we have embarked on together in hopes that it would save some of the newcomers some time and effort in finding the information they need.

Much of this information is from Diabetes.Blog.com. This blog is not meant to replace communication with your Health Care Provider. It is important that you personally assume the responsibility for reporting your symptoms to your Health Care Provider. Communication with Amylin/Lilly should be done by you or your Health Care Provider. Posting to the blog does not get them to the right people. If you call Amylin/Lilly to report an adverse event be prepared to give them the name and telephone number of your physician and all of the medications you are taking.

Here is what I definitely know about Byetta

The US Food and Drug Administration (FDA) approved BYETTA in April, 2005 for the treatment of type 2 diabetes. BYETTA is the first in a new class of medicines called incretin mimetics. BYETTA (bye-A-tuh) exhibits many of the same glucoregulatory actions of GLP-1*, a naturally occurring incretin hormone. It is officially FDA approved as adjunctive therapy for patients with type 2 diabetes mellitus who are taking metformin, a sulfonylurea, or a combination of metformin and a sulfonylurea but have not achieved adequate glycemic control.

Official Amylin/Lilly site for Byetta http://www.byetta.com/index.jsp

Temperature concerns

Byetta must be maintained at 36-46 degrees which means refrigerated. There is a welcome kit available from Amylin/Lilly that includes a wallet and cold pack that is apparently available by coupon in some starter packs and also available on the web site at this address www.byetta.com/welcome. The travel pack from Lilly is only good for three hours. I did some research on the Frio wallets and they only maintain temperatures of 68 degrees and while that will give you some protection from the elements and if soaked in ice water they will keep it cold for a limited time they resolutely return to their advertised temperature of 68 degrees. Requesting a hotel room with a refrigerator as an ADA request should not be a problem in this day and age. You may need to buy a car refrigerator if you take a lot of car trips.

This post from Phillip summarizes what Lilly /Amylin has told us in telephone calls:

We all know Amylin says we should store Byetta in a fridge when not being injected. They recommend a fridge bag for going out to dinner or traveling. Any good fridge gel bag will keep your pen colder than a Frio but only for 8-12 hours. Good for a short trip. Amylin also told me in a phone call we can keep our pens at room temp (~72-75F) as long as 144 hours total over a month.

Another question that has come up several times has been can you drink on Byetta? I don’t drink very often as I’m on metformin and have migraines so haven’t really tested this one personally. There is no official answer. There is a specific warning that metformin and alcohol can decrease blood sugars. Prudence would seem to be in order and the people who acknowledge they have tried it do state they can’t consume as much as they previously did. Enough said.

Side Effects

The known ones are of course our biggest problems but there have been some identified on the Blog that are not in the literature. I ‘m going to address each of them and try to give a synopsis of all the suggestions. Please forgive me if I left out any. It is nothing personal. I have tried to review both Blogs today as I was writing this but I’m sure I have left something out.

Nausea: Probably the worst and most debilitating if you get it. A lucky few escaped with just a little or only a few days. It is definitely dose related and some of the things that have been considered a total day off; starting with one shot a day for one week and then increasing to two and repeating with a dose increase; staying at 5mcg for an extra month or two if you are having problems adjusting especially if you work. Drugs that some of you have been prescribed or are taking Phenegan, Zofran, Compazine Emmetrol, Pepto-Bismol, Pepcid AC and Benadryl. Non-medical things that seem to help some people sugar free mints, Real Coke, Coke Zero, Ginger Ale, Tummy Tamer Herbal Tea, Dole fruit cups, eating immediately, waiting to eat. Other tips are staying away from high spicy or high fat foods. It is a highly individualized thing and some people sail through with few problems. But the ones who are ill are very ill.

Hypoglycemia: While this is second on the list I don’t think it’s been a huge problem for us. Just a few posts and mirroring the Trials it is the patients on the sulfonylureas. You need to be prepared and take precautions and the recommendation is if you are on one of the sulfonylureas you might consider a dosage reduction before starting Byetta.

Jitteriness: No comments on this one.

Dizziness: I believe this one is due to B/P dropping and the cardiovascular effects of this drug which are just beginning to be studied.

Headache: There have been complaints of headache both regular and sinus. No one has posted anything specific they are doing for it. I am wondering if the body is protesting all these shifts to normal that are going on.

Dyspepsia: another frequent complaint and can be rather embarrassing. Belching at inopportune moments. A prescription for a Proton Pump inhibitor helps but does not eliminate nor does adding Pepcid AC for me. Avoiding particularly gassy foods has been helpful to some people. Sipping coke to make the belches come was one person’s solution.

Asthenia: a fancy word for weakness or lack of energy and strength. Lots of people have mentioned tired or fatigue or no energy and the only thing here is apparently time.

Decreased appetite: Most of us were counting on this one to work and for most it is. The weight loss seems variable and most dramatic for those of us on drugs that caused fluid retention but there is most definitely a real sustained weight loss for most people with this drug. There is a description of a feeling of fullness with less food and no real hunger. People are saying they have to be reminded to eat.

GERD: Gasrtroesophageal Reflux disease. A fancy word for the burping we are all doing. I think most of us already had this anyway.

Hyperhydrosis: Excessive sweating I seem to have missed this one and there hasn’t been a lot of comments about it.

That’s the official Byetta List

The Uncharted Territory: Our List of things we have discovered

If you have anything on this list it is important that the manufacturer be notified either through your Health care Provider, your Pharmacist or self report it by calling the 800 number noted in the contact section earlier.

Teeth Pain: A number of people have reported increased sensitivity in their teeth despite good dental hygiene and previously healthy check ups. No one has particularly remarked as to what they are doing about it but I have tried taking a couple of Tylenol. Thankfully my teeth were cleaned not long before I started. Something to think about if you haven’t started.

Male dogs chewing up their owner’s underwear. Two reports. It is a hormone. It is excreted in the urine and Dogs have very sensitive noses. One solved the problem by putting the hamper in the closet and the other started using panty liners.

Feeling cold after an injection: Several people are complaining of this. It is a blessing with the temperatures we have been having this summer but seems to be for a couple of hours after each injection and is sometimes followed by a flush.

Decreased number of bowel movements or constipation:Universal complaint. Slows gastric emptying and apparently all of peristalsis.

Sneezing, nasal congestion, allergy symptoms: numbers of these seem to be growing and I don’t know if it is because it was reported and the connection was made or if it is occurring over time. This is another one I think definitely needs to be reported to Lilly. Some have reported using antihistamines. I haven’t had this but I take regular antihistamines anyway so it may be masking it.

Diarrhea: and today a report of abdominal cramping.

For completeness sake

I am including for completeness sake all of the links that are on the Byetta site. All of these can be reached from the main page but thought some might appreciate a one-stop approach.

Explanation of Incretin mimetic: http://www.byetta.com/hcp/200_incretin_mimetic.jsp?reqNavId=2

Safety Profile Information from Amylin/Lilly: http://www.byetta.com/hcp/230_byetta_safety_profile.jsp?reqNavId=2&subNav=3

New Patient Information: http://www.byetta.com/consumer/300_byetta_patient_information.jsp?reqNavId=3

Videos: http://www.byetta.com/hcp/140_incretin_hormone.jsp?reqNavId=1&subNav=4

5 mcg dosage instructions: http://pi.lilly.com/us/byetta_5_user%20manual.pdf [PDF file]

10 mcg instructions: http://pi.lilly.com/us/byetta_10_user%20manual.pdf [PDF file]

Physician Prescribing Guide for Byetta; has the study results: http://pi.lilly.com/us/byetta-pi.pdf [PDF file]

Patient Information guide for Byetta: http://pi.lilly.com/us/byetta-ppi.pdf [PDF file]

Contact Information: http://www.byetta.com/hcp/400_byetta_customer_support.jsp?reqNavId=4

For answers to questions about BYETTA, please contact the Amylin/Lilly Customer Support Center toll-free at 1-800-868-1190. They are only open 7AM to 11PM Eastern Time, M-F, 7AM - 5PM ET Saturday, Sunday, and holidays.

About me

I am an Advanced Practice Nurse, more specifically, I am a Clinical Nurse Specialist trained at the Masters level in Adult Health Medicine. I first got involved with diabetes in 1974 when as part of my Education Instructor position I suddenly found myself teaching diabetic classes. I think I was a Certified Diabetic Educator before the position was officially recognized because I went through a week long course at Grady Hospital in Atlanta, Georgia with Dr. John Davidson and received a certificate. I started a Mother’s Group when I got complaints there was nothing for children and one of those moms went on to be instrumental to be a founder of the Juvenile Diabetes Foundation so I have a 30 year history in nursing and I have kind of come home after many years to catch up on diabetes. I have insulin resistance and severe coronary artery disease so I am not the typical Byetta patient but for many reasons I am here too with all of you.