Drug change

My insurance no longer covers Victoza. So trulicity or byetta? What to do? Nancy

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Trulicity is NASTY … but it works !!

Everyone is different, so you may respond to one better than the other. I presume you are asking because Trulicity and Byetta are on your formulary and hence covered (there are other GLP-1 drugs as well). Byetta is the oldest GLP-1, it is taken twice a day before your morning and evening meal. In contrast Trulicity is a once a week injectable. Studies seem to show that Byetta and Trulicity have roughly the same effectiveness. Clearly Trulicity is a much easier medication to use and if it works for you it would seem to be the right choice. You should ask you doctor to give you a sample to try it out, and don’t forget there is a Trulicity Savings Card (there isn’t one for Byetta)

Nasty?? Yes insurance formulary has changed. I doubt my office has any samples. She told me last visit no one comes to see them anymore. I will see what she thinks is best. Thanks. Nancy

Yes … NASTY ??

  • Gastroparesis - unpredictable lows followed by unpredictable highs
  • Nausea
  • Heartburn
  • The absolutely worst tasting and smelling belches

Then there is the possibility of the more serious side effects:

  • pancreatitis
  • DKA - even with normal blood glucose levels
  • kidney damage
  • cancer

Yup … Nasty !!

Yikes,thanks. Nancy

There is some discussion that this class of drugs is so unsafe the entire class will be pulled. There is a lawsuit in the 9th circuit which should be ruled on soon concerning Januvia, Byetta and Victoza over pancreatic cancer and pancreatitis.

Here is a good summary on the lawsuit - https://www.drugwatch.com/januvia/litigation/

As bad as these are Trulicity may be even worse, if that’s possible. It already comes with an FDA ‘black box’ warning about its risks of medullary thyroid cancer and other thyroid tumours. It was approved on the basis of just five small clinical trials (less than is usual for this kind of drug). The FDA has required Eli Lilly to carry out five ‘post-marketing studies’, including an assessment of cardiovascular risks in people with type 2 diabetes as there is concern it may cause heart attacks too.

With any of these meds the risk IMO outweighs the reward especially when the issue T2’s face is none of these T2 meds address the issue which T2’s face which are meal time sugar spikes. If you can control the spike and get back under 100 in a couple of hours you should be in pretty good shape. Only insulin can do this and by far the best for T2s is afrezza. If you can get coverage you may want to give it a try. Many of the current users are hitting a 5.5 target, give or take.

There are many lawyers out there who just make their living chasing ambulances. It is important to understand the risks of any medication. But we all need to actually “read” the prescribing information. The FDA is very conservative and demands a lot from companies in terms of adverse effects. And if there are risks the FDA absolutely will put in a warning start a surveillance program to see if adverse events are happening after a drug is approved.

Here is the Trulicity “black box” warning (you can look at the details here in the prescribing information):

In male and female rats, dulaglutide causes a dose‑related and treatment-duration-dependent increase in the incidence of thyroid C‑cell tumors (adenomas and carcinomas) after lifetime exposure. It is unknown whether Trulicity causes thyroid C‑cell tumors, including medullary thyroid carcinoma (MTC), in humans as human relevance of dulaglutide‑induced rodent thyroid C‑cell tumors has not been determined.

Trulicity is contraindicated in patients with a personal or family history of MTC and in patients with Multiple Endocrine Neoplasia syndrome type 2 (MEN 2). Counsel patients regarding the potential risk of MTC with use of Trulicity and inform them of symptoms of thyroid tumors (eg, mass in the neck, dysphagia, dyspnea, persistent hoarseness). Routine monitoring of serum calcitonin or using thyroid ultrasound is of uncertain value for early detection of MTC in patients treated with Trulicity.

Wow, so rats have a problem with it (and I think most GLP-1 drugs carry this same warning). But apparently thyroid cancer has not been observed in patients taking the drug in sufficient numbers to conclude that there actually is a risk. And literally millions of patient years of GLP-1 use has been accumulated. If this actually is a risk, it’s rate of occurrence is small. Despite that patients who have personal or family history of MTC are contraindicated.

And Afrezza is no golden child. Afrezza also contains a “black box” warning:

WARNING: RISK OF ACUTE BRONCHOSPASM IN PATIENTS WITH CHRONIC LUNG DISEASE See full prescribing information for complete boxed warning.
• Acute bronchospasm has been observed in patients with asthma and COPD using AFREZZA. (5.1)
• AFREZZA is contraindicated in patients with chronic lung disease such as asthma or COPD. (4)
• Before initiating AFREZZA, perform a detailed medical history, physical examination, and spirometry (FEV1) to identify potential lung disease in all patients. (2.5), (5.1)

I think it is important that we all do our best to understand the drugs that we take and the adverse effects that might occur. Every drug has adverse effects. That doesn’t make it toxic or universally bad. We have to weigh the risk that we take with every drug against the benefit we get.

And for something like Victoza, Byetta or Trulicity the science seems pretty clear. The risk from taking these drugs is far less than the risk that we take every day getting in our cars and battling traffic.

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I have trust in my doctors that they will guide me right. I have taken Victoza and loved it. I have had no issues with it. I will shortly be 65. My diabetes is in pretty good check. Nancy

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This is a REALLY narrow-minded point of view. I have a diabetes-related cancer diagnosis. My haemotologist told me that if I lose weight, control my blood sugar, and exercise, I can control, and even reduce the cancer growth.

So, that explains why weight loss and diabetes control is so very important in my case.

I was stuck in the cycle of elevated blood sugar causes carb cravings … carb cravings and elevated blood sugar cause weight gain … weight gain causes insulin resistance … insulin resistance causes increased insulin and elevated blood glucose.

I tried to stop the cycle on my own with daily calories at 2,000. As far as exercise, I am an avid cyclist & mountain biker riding up to 10 hours a week and doing weight training 3 hours a week. Yet, I still continued to gain weight. This went on for over three years. The weight gain continued to fuel cancer growth - despite continuous endurance training.

Then I went on Trulicity. After the first shot, I immediately began to lose weight. I’ve am now on my 8th week and have already lost almost 20 lbs.

In my case, the reward being reduced cancer growth - definitely outweighs the risk !!

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With these T2 meds what you need to weigh are short term rewards versus long term risk. Thats a personal decision until many of these drugs follow the path of orinase and avandia.

The body is naturally tuned to use insulin to reduce high blood sugar. By far the best insulin for addressing meal time spikes is afrezza. The fact is it is the only one which mimics phase one insulin release.

Brian points out the afrezza black box warning. This was done as a precaution to avoid any issues with COPD patients. If you have COPD don’t use it or use it with full knowledge. Sorry COPD PWDs, no afrezza for you.

Now, afrezza is the same natural insulin molecule the pancreas secrets plus an inert stabilizing particle which is excreted in tack from the body. Trulicity, Januvia, Janumet, Byetta, Victoza are a far cry from natural insulin and insulin is the only thing the body naturally uses to reduce meal time sugar spikes. How Trulicity ever got approved based on the clinicals which were performed is at best shocking.

Brian also points out the risk from taking these drugs is far less than the risk that we take every day getting in our cars and battling traffic. Again, its a personal choice but since these drugs really don’t work all that well why take the risk when you can address the problem head on with something which actually works like a healthy body. It would be like driving a car knowing the wheel is about to fall off.

Look, the reality is the numbers do not lie. 70%+ of all T2s taking these drugs are not hitting a 7.0 A1c let alone a 5.5. A 7 is 154 average BG and microvascular damage starts at 140.

If your raised BG is causing carb cravings get the BG down and as fast as you can. Fact is don’t ever let it spike above 180 or you will see additional insulin resistance but 140 to 150 should be the max target and back under 100 in under 3 hours. These T2 meds can’t do that. In a few years Tim Cooks IWatch CGM will be worn by everyone and people are going to be going crazy if they go above 130.

I recently has a great discussion with a well know expert and asked him his opinion on all these T2 meds. He equated them to trying to put out a burning house with a garden hose and there is a pretty good chance the house will burn down. If you have a fire hose why use the garden hose?

Simply put, I suspect my dr. would deny my request for insulin when Metformin is helping control my T2 diabetes.

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Again, you are making some broad-based statements based on some statistically average results. Trulicity DOES work for some outliers. My A1C was over 10 until I started Trulicity now my readings are consistantly below 125. The carb cravings were far stronger then the cravings for cigarettes when I quit smoking many many years ago. Trulicity eliminated those cravings overnight.

I appreciate that you can read. Perhaps, you can even read scholarly research papers. It doesn’t seem, however, that you are recognizing that there indeed exceptions to the average.

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So, this isn’t a great way to conduct an informative (or informed) conversation. You’ve made your point of view pretty clear here and elsewhere: you don’t think the risks or effectiveness of oral medications for Type 2s are worth the risks. You also have stated numerous times that you believe Afrezza is the answer to mealtime spikes.

We get it. You like Afrezza (don’t most people who can afford it and get it prescribed?). But pulling the whole “I talked to someone who is an expert and they said …” isn’t that useful. It is more useful to either link to a source for such claims, or to have that “expert” share the information they have. But in the way you’re presenting it, it just sounds like hearsay.

Many people find oral medications work well for them, and they make a choice to use them. Many people find they don’t work, or have side effects they don’t like, and choose not to use them. My job in a forum like this is to share my experience and knowledge, not to tell people what they should or shouldn’t do.

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Here’s the real flaw in your argument. If I could have stopped eating the carbs and got my BG down on my own, I would have years ago.

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Micheal - its like anything else you need the right tool for the job. Pounding a nail with a screwdriver does not usually work out to well.

If you pancreas was healthy it would get you BG down after meals with a robust release of insulin which would not only blunt the spike but turn off liver glucose production. It will then continue in a phase 2 releasing moderate bursts until you BG is under 100 and then you glide back to 83, give or take in a couple hours. At that point you are back in a fasting state.

Up until recently the tool to provide that robust release and mimic first phase insulin release was not available. So about the best you could do is what Dr Bernstein has promoted since 1970, reduce the carbs, replace them with fat and eliminate the spike. Whats Dr. Bernstein say fat is not evil and that it is required for survival since much of the brain is made from fatty acids The funny thing is back in 1970 everyone was mocking that “crazy engineer” later turned doctor. The bottom line was Engineer Bernstein was working with the tools he had and he didn’t have a fast enough insulin.

Now you don’t need to stop the carbs you just need to deal with them like your pancreas would. Carbs no longer need to be the evil because we did not have a tool to deal with them. The tool is now available although until recently there was a lot of doubt in the community that it works as well as it does.

I was talking with a very knowledgeable PWD today who is also a CDE. Two years ago she said she would never ever touch afrezza. It doesn’t work. It’s no good. It will explode her lungs and a few more reasons. Sitting next to her monitor showing a Dexcom “cloud” display of a BG graph was an afrezza inhaler.

She explained to me she started using it for corrections but is now using it more and more. She said is was really hard for her as a long time PWD getting use to it because it is totally different from every other insulin she has ever used. In fact she said for all these years everyone wanted a faster insulin and now we have one but sometimes its too fast for her.

I asked her if she was still on the carb restricted diet when using afrezza which of course she was. OMG, it hit her, moderate on the carbs and lower the fat to speed up carb absorption reducing the need for follow-up dosing. No PWD following Bernstein would ever do this.

Now as far as oral T2 meds working well, that simply is not supported by the facts. If it were the ADA would not have a step program which ends with insulin. It would end with metformin, or Trulicity or one of the others. Whats the average meal time spike of a T2? No one knows, right? It doesn’t matter as not one of the T2 meds could handle it anyway. What we do know is a nice walk and a diet change works twice as well as metformin. In fact metformin was no better than a placebo in preventing diabetes in a landmark study. For those that like links - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1370926/

In a few years not only PWDs but everyone will be walking around with some form of CGM with their IWatch, or Google watch or whatever. At that point who is ever going to believe an average BG of 154 (7.0 A1c) is acceptable? They are going to go crazy knowing a non-PWD never goes over 130 and they are at 135 after lunch. For those that like links -

The good news is now there is a tool to address the lunch carb spike like a healthy pancreas. We don’t have 2 or 3 or 4 of these tools. If we did I would tell you about them too. There is only one today and based on what was shown at ADA 2017 there are no efforts near or long term to develop another one. It took 95 years to get the first one but its finally here.

Again, you are presenting a “one size fits all” response. Like I said, I tried all you said and it didn’t work - for three years. My endocrinologist handed me a sample of Trulicity, and now 7 weeks later, I am down over 15 lbs and losing 2lbs a week consistantly, and my BG readings have dropped dramatically and never goes over 125.

The academic “one size fits all” approach may support what you are saying. Yet, my anecdotal evidence seems to suggest a different story.

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Agreed.

I think it is easy to get caught in the trap where somebody starts to think that their way is the correct way and the only way and all other approaches are wrong.

It also always becomes more difficult to follow somebody’s line of reasoning when facts and opinions are so intertwined that the one can not readily be discerned from the other.

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Actually, it doesn’t. I’m a biological researcher by profession, and read a lot of diabetes related research (for fun, not for work…but I’m qualified to understand it, if that makes sense). The academic research community around diabetes understands implicitly the “YDMV” conundrum: there are hundreds of different presentations for T1, T2, MODY, MIDD, T1b, physical DM, and other variants of our shared disorder. The academic community also understands that effective treatment is tailored to an individual, while population-wide public health measures are tailored to population-level effects.

The reason why we have so many of these pointless arguments on here and other forums (insulin vs. orals; obesity causes T2 vs. T2 causes obesity; etc.) is because people don’t understand how scientific research works. We all want to understand our diseases, and that means we want the diseases to be simple, relatable, and like basic math: Diabetes + Insulin = Health. Or Type 2 + Diet*Exercise = Health. Or… you get the point.

Diseases like diabetes mellitus are terribly complicated, multifaceted, and poorly understood. Why? Because the pancreas is an incredibly complicated organ, biochemistry is really complex and difficult in and of itself, and blood glucose regulation is not just a matter of “beta cells produce insulin.” Biological regulation of blood glucose is performed in a healthy human by a system including the pancreas, the liver, the brain, the upper and lower GI tracts, fat and muscle cells, and probably half a dozen other components that haven’t been identified yet. Each one of those organs or constituents is a system in itself. So, blood glucose isn’t regulated by beta cells: it is regulated by a system of systems, half a dozen hormones, complex autonomic signaling, volitional choice, carbohydrate digestion, gluconeogenesis, fatty-acid metabolism, …, ad infinitum.


Trying to boil treating diabetes (in anyone, of any type) down to “take insulin” or “take orals” or “change your diet” is incredibly short-sighted and almost always wrong. Such advice is based in knowing just enough about a disorder to use all the key words, but not enough to understand that solutions to systems-level problems are never simple.

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Maybe it’s always been this way with humans, but it seems like this is getting worse. Maybe I’m just becoming more aware of it as I get older. So many people seem completely, absolutely limited by their own experience that they can’t conceive that what is “truth” to them may not be to someone else. It’s not just medicine, it’s politics, religion, education, economics, etc.

“I figured out what works for me, and now everybody else should just do what I do!

In what world has this ever made any kind of sense? I feel like people don’t just lack critical thinking skills, but also lack basic human empathy and sympathy in sufficient quantity or quality to understand that other people may experience life differently.