Full Version: Bydureon Problems

From: Asedai [#1]
 30 Sep 2012
To: ALL

Hello. I have been on the Bydureon for approx. 3 months now. When I first began injecting Bydureon I had no nausea and no problems (unlike Byetta which I had to stop last year due to nausea and vomitting). At about the 8 week mark, I started to experience the nausea and vomitting on Bydureon that I did with Byetta. This is about right on a timeline kind of thing because the accumulation/saturation point of Bydureon in the bloodstream is at about that time. My BS's have been absolutely beautiful! Mornings are anywhere from mid 80's-upper 90's.! (nod) I was also taking Metformin (1 ~1000mg) at bedtime. But I also started to see a pattern of low blood sugars so my doctor took me off of the Metformin and now I only take the Bydureon but am still having the low's. So here comes the parts of this message that I am concerned with...I keep experiencing low bs's every day which I have never really had to deal with in the past. Usually after injection I am immediately nauseated which then leads into a short period of time to vomitting which stops after about 1/2 hour. I have started to extend the Bydureon injections from every 7 days to about every 10-11 days in hopes that whatever that threshold for me was when I started to get nauseated might be lowered just enough to make it stop. I am also noticing that when my bs's go low (70-lower 80's) it starts with nausea which I can then immediately take my bs reading to confirm the low bs's. This is apparently the way my body reacts and is my trigger to know when bs's are low...immediate nausea and some trembling and shakiness. So at that point my dr. prescribed Phenergan to help with the nausea. The Phernergan is making me wayyyy to sleepy so I guess I will have to change that as well. I can not seem to determine if the nausea is caused from the low bs's or directly from whenever the Bydureon kicks in. It also appears to me that if I eat to many carbs I am then nauseated and vomit. But, if I don't eat enough then I still get the same reaction. And, now to top everything else off, I am also now experiencing the injection site nodules. I have rotated the areas of injection so I really don't know why I got them. So my questions are:

1. Anyone else have the problem of low bs's on Bydureon? Low's are not "supposed" to happen solely on this med. (And, yes I am a healthy eater and do eat regularly)
2. Anyone else notice eating to much (carbs) causes nausea? vomitting?
3. Suggestions?
4. Injection site nodules and itching...do they go away? Anything I can do to make them go away faster or to avoid them all together?
5. Do you stop taking the Bydureon due to these reactions?
6. Also, is it my imagination or does Bydureon seem to come with even more WARNINGS than the other meds? Thyroid? Tumors? Renal Failure? Masses? It's almost frightening to read all that.

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From: RM_in_AK [#3]
 2 Oct 2012
To: Asedai [#1] 4 Oct 2012

1: No. I haven't experienced lows (<50) for years on Byetta, Victoza or Bydureon.

2: Yes, just like Byetta. If I eat past feeling full, I don't feel right. Not really nauseous but definitely poor enough to try and not let it happen.

3: I am still careful to not eat if I'm not hungry and only eat a small amount then wait to see if I feel full yet. The full feeling is not immediate. For me, a cup and a half serving is usually adequate. If I eat anything significant (more than a small bowl) for breakfast, I'm usually not hungry until 12 hours later. And way too full to have anything for lunch.

4: Sometimes but they never seem to last more than a few hours.

5: No, the reactions aren't significant enough when compared to how well it seems to control my BG levels (and my appetite)..

6: I don't know. They all seem to come with a lot of warnings. I just had my A1c checked and it had gone down to 5.7. This stuff seems to really work great at least for me.

Just my opinion....

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From: toneylee in VA (TONEYLEE) [#5]
 3 Oct 2012
To: Asedai [#1] 4 Oct 2012

Hi Asedai. Re the lows and nausea: I recently talked to a long-time poster here--Geri. She hasn't been on Bydureon, but has had much experinece with Byetta and then Victoza. She went through several months of unpredictable and uncomfortable lows, so much so that she was prescribed a CGM (continuous glucose monitor). She needed the warning and the ability to try to identify a pattern. If you could talk to your doctor about a CGM, Geri thinks it might help you, too.

She feels that your nausea and vomiting is directly caused by the lows and says the only remedy is to eat something sweet or take a glucose tablet when you feel the low coming on. Have you tried that?

I agree with RM about watching the mouthfuls of food and carbs--hard to figure out sometimes, I know. Some people find they need to restrict carbs severely; others do better with getting up to 30 grams a day. It's such an individual thing. But eating slowly enough to know when you are full can help a lot.

I don't know anything about the nodules, but I do have a question: Is your doctor an endocrinologist or your primary care doctor? I ask because maybe an endo would be able to help with some of the difficulties you are having.

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From: Asedai [#7]
 4 Oct 2012
To: toneylee in VA (TONEYLEE) [#5] 5 Oct 2012

Thank you for the replies. I very much appreciate it. Yes, I kind of think the nausea is from the low's and I can immediately know I am low by that queasy feeling coming on. I have had to really make sure that I have snacks with me (quick reach) or keep a regular soda around just in case. It seems to me that I need a "good" breakfast of 2 slices of toast and an egg and maybe some fruit for breakfast. Sometimes by 10:30 ish in the a.m. I start to go low and have a quick peanut butter cracker or similar. But usually in the evening...the less I eat the better but I end up having to eat small amounts twice in the evening. I have never had to MAKE sure and eat so all of this aspect is new to me. Before Bydureon, I could have a protein shake or protein bar walking out the door but not anymore. But in all honesty, my BS's were "ok" prior to Bydureon...not great...but still under 7 for A1C. But now since Bydureon they are excellent and I am in the high 5's. I wonder if my body is still adjusting to lower "normal" blood sugar levels as well. I haven't really lost much weight...only a few
pounds (fail)

I will ask my NP about the CGM. I am wondering if she would think this is not severe enough <?> or be unwarranted. I have now been spacing out the Bydureon at at least 12 days apart and still ending up with some low's but I am more aware of it so have made adjustments. I need to take my next Bydureon dose but am afraid to until I get some more information on these injection lumps/nodules. So no one has experienced these bumps? /shaking my head....I should have won the lottery 10 times over for the type of luck I have with these medicines! :S But those injection site nodules (pea size) are bothering me and until I get some firm understanding about them, why I am getting them etc. I don't know if I should take the Bydureon.

I go to an Endocrinology & Diabetes Center. The head doctor is an Endo but I see a person by the name of Sabrina Wood, Nurse Practitioner, Np, Cde, Cfnp. I did see the Endo several weeks ago, and he ran a test ... hmm...can't recall the exact name...fructosium or something like that. It was to measure what my BS's have been over the last month rather than the past 3 months or so as with A1C's. I came in at 216 which I was told was really good but I don't know exactly what that means as far as an actual scale of reference..lower end...middle...high etc.

Any other information is really appreciated and again I thank you for the replies I did get.

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From: toneylee in VA (TONEYLEE) [#9]
 5 Oct 2012
To: Asedai [#7] 5 Oct 2012

Yes, it can be a fight to get a CGM--I know Geri's doctor had to struggle to get hers approved. And you are right that your lows aren't that low. But Geri just suggested that I mention it to you. I also think you are right that your body is still adjusting to the lower (and great!) numbers, and it can take some time before you feel normal again. I hope you adjust soon!

I just can't remember anyone talking about nodules with Bydureon. It is very new, after all. I do remember people having trouble with rashes at the injection site with Byetta. People here developed the theory that it was caused by a tiny drop of fluid getting on the skin. Many used a method of rotating the needle before withdrawing it--kind of like wiping it off inside so no drops would be left on the needle. I don't know if that is a similar problem, though. Sorry to have little to suggest, but I do hope your doctor will have some ideas. You are actually doing terrific with Bydureon--I hope the problems go away with time or that you find an answer. Have you thought about calling the company's help line and asking them? I know they have a Byetta help line. Maybe they would have some idea?

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From: Asedai [#11]
 5 Oct 2012
To: toneylee in VA (TONEYLEE) [#9] 6 Oct 2012

Great idea! Duh....dunno why I didn't think of that. Of course, they will do all within their power to make sure you keep taking their product so I am not sure how confident I would feel in their reply. But it is worth listening to at least.

I decided to just make an appointment with my dr. and bring my list of questions to be answered. Seems easier when you are one on one in person asking questions. Geesh...now I am going to pay a co-pay just to ask questions! (fail) But I think at this point in time would make me feel better and not worry so much. I will let you know the responses after Tuesday.

Thank you again for the replies! Nice to have people to throw out questions to that might be having the same issues or need some support from.

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From: cathy (CATHYHARJUND) [#13]
 6 Oct 2012
To: ALL

Hello, Are you feeling better? Please let us know how you feel. :) god bless you

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From: Deb (TINKERBELL63) [#15]
 5 Aug 2013
To: Asedai [#7] unread

I know what the nodules are. My dr. explained them to me. I personally haven't gotten any to speak of but i read these forum and many people do deal with them.. But they are nothing to worry about. This medicine is mixed with dissoveable stitching type stuff and Byetta this becomes Bydureon longer lasting . That why its long lasting it releases into your system. The balls or nodules are just that stuff coming together and waiting to be released. What I do is rub the spot where i give myself the shot and that helps it to spread out and so far I have no lumps or bumps. Hope this was helpful. And don't worry it goes away.

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From: fgris [#17]
 8 Aug 2013
To: ALL

Does anyone know a way to keep the Bydureon needle from clogging?

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