Starting insulin . . . so far, so good

I was diagnosed T2 5 years ago. With changes in diet, regular exercise & Metformin, I maintained an A1C below 6.7 for 4 years. Things seemed so steady that, I’ll confess, I stopped testing my blood sugar on a regular basis.
About a year ago, my A1C started heading up: 7.1. My pcp wanted me to add Januvia. I went to see an endo–she suggested three different meds as options. I hesitated, overwhelmed by the choice. I let months go by.
Last month my A1C hit 7.6 & I knew I had to do something. In part because of reading posts on TuD, I decided to try insulin. I’m taking long-acting insulin (Levemir), once a day. Now my blood sugar is much lower. I was worried about hypoglycemia, but none so far.
Feeling well!

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glad you are doing well on insulin. As you apparently know, 7.6 is somewhat too high for long term health. In a few months, will you be getting another A1c test to see how much of an improvement the insulin has made? I’m always anxious to see my A1c results, esp when I’ve gone through periods of higher-than-normal bg’s.

Great–hope it stays that way! How much are you taking and when did you start?

I’m a T1 and for a while I was on MDI (Multiple Daily Injections), which is kind of similar to a pump except you take a long-acting insulin like Levemir or Lantus for your basal requirement, so it’s just one dose for the day (sometimes two) instead of a pump making all those little adjustments you can program into it. In my case the basal was Lantus, about 40-50 u/day. I took it first thing in the a.m. and actually found I could skip daytime meals entirely (breakfast or lunch) without a significant hypo. So hopefully you’ll continue to find it pretty stable that way. Testing more often will obviously help you get a sense of how your body reacts to different stimuli–exercise, different foods–which helps too. Hypos are no fun.

This is so understandable and it’s one of the things that, as a T1, I’m glad I didn’t have to deal with. People are a little freaked out by insulin, and not without reason–the needles, the fact that the stuff can put you in a bad way so easily–but for T1 at diagnosis there’s a lot less to it in terms of agonized decision making. For most (though not all) of us the dx is quite acute and unambiguous, as opposed to slowly creeping up on you like T2, and you’re either going to start taking that stuff right now or you’re going to die. If I had to decide my condition had reached some threshold somewhere along a slow curve, versus hey maybe I can just bear down a little more on the diet ‘n’ exercise and see how things look a month from now, or two, or three… I probably would have acted no differently from you. Just sayin… :slight_smile:

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@Deborah3,
Good for you. I found insulin helped me a great deal.

Yes, I kept hesitating in the face of ascending numbers. If it wasn’t for many posts here re the ease and efficacy of insulin, I might have chosen an oral med (notwithstanding possible side effects).
Adding to the T2 ability to hesitate, I had no symptoms from my high numbers.

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After seeing 2 weeks of my daily numbers that included a few evenings at 180+, the endo recommended that I add Prandin or increase the units of Levemir.
Knowing I could do a little more in the lifestyle department, I asked for another week. Since then I’ve exercised after dinner. Result: my before bed bgl is back down to 130 or lower.

I am amazed how quickly the endo pushed more meds instead of considering diet/exercise! I’m wondering how one finds an endo with a more holistic approach . . .

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Prandin may actually have some benefits. It is the one insulin stimulating drug that appears to be safe to use. It is short acting, only active at meals. The advantage of using it, if it does work for you, is that the insulin it stimulates is produced along with C-peptide. C-peptide has some advantages in protecting nerves, it is believed.

I switched to Prandin from meal-time insulin for that reason and it worked very well for me.

However, whether or not it will work has a lot to do with what is broken. In my case, what is broken is a step in the insulin synthsizing sequence within the beta cell and Prandin apparently bypasses that step. If your beta cells are dead thanks to immune attack then these drugs won’t do anything.

But from my studies of the subject I have concluded Prandin is one of the very few safe drugs. The one big issue with it that people need to be aware of is that when combined with metformin it can be much, much more powerful than when taken alone since it uses the same liver enzyme for the body to eliminate it. This can cause hypos in some people.

Thanks Jenny! Should my endo suggest this again, your experience/ideas are helpful indeed.

Jenny, we joined this forum to research Afrezza and to learn about initiating insulin (the topic of this thread) and I recall seeing your posts in a few of the Afrezza threads here and thought you might provide some insight. Sanofi claims on their website that Afrezza is a good choice for those initiating insulin and I am curious what your thoughts are? Is it something special about how Afrezza works as to why a new insulin user would use it versus a basal or another mealtime insulin? Very confusing!

I have been listening carefully to web chatter about Afrezza for the 6 months since it was released, trying to get a feeling for how the inhaled insulin really performs when used by actual people with diabetes in real life, but I have not been able to draw any conclusions because 99% of what is being posted about it online is being posted by investors who are desperate to push up the stock price and by a very small handful of people who post obsessively about it on Twitter in a way that raises the question of whether they are part of an “astroturf” fake grass roots campaign.

The people posting about this drug really stand out because several are known investors (who post about their Twitter posts on investor boards.) Others have some other connection with the company.What we haven’t seen, which contrasts dramatically with what I saw when Byetta was launched, is an influx of new users posting about it who are people we have already met in other contexts online before they started posting about the drug.There are two people who are very visible to the Type 1 community who have publicly posted about Afrezza, but in at least one case, the person’s ability to get responses from higher-ups at Sanofi make me doubt that they are as independent as they sound. How many people here have ever gotten a personal response from anyone at a drug company when reporting problems with a drug? The only time I get that kind of response is when a company has sent me a product, for free, to review–something I try to avoid doing. So I assume Sanofi has been cultivating these people with thousands of Twitter followers as part of its marketing campaign.

More tellingly, almost all the people posting about Afrezza had zero Twitter or web presence before they emerged and began touting Afrezza. Many of them post only about Afrezza. Anyone who posts anything in public about the drug that describes a problem with it is immediately beset by trolls who accuse them of working on the behalf of stock manipulators–this of course points out how stock-focussed these people really are. The nastiness of the investors is such that it probably keeps people from posting honestly about their experiences with the drug unless they are wonderful.

I know a grand total of one person who is someone I knew before the drug was released who has actually tried Afrezza. He tells me it seems to work but causes coughing. I have had a request for feedback from users posted on my web page for 6 months and have received only one response–from one of the very visible people promoting the drug on Twitter who approached me with an email that began with the statement that he was not associated with the company, a statement I have never yet heard from any of the hundreds of people who have written to me about their experiences with other new diabetes drugs.

Sanofi is very limited in what they can say about Afrezza because its label is awful–basically saying it isn’t as good as injected insulin and that it can cause serious hypos. The activity curve published on the label looks like the stuff might actually replace first phase insulin, which if true would make it a very useful tool. But the astroturfers are promoting it as a miracle cure, and the more I hear these claims–always from the same small group of people–the less I trust them.

The people who are reporting these miraculous results with it are mostly Type 1s who get prescriptions for many boxes a month. This lets them do several correction doses after each meal, which are necessary because the insulin is so fast it is gone while food is still digesting. This is not the way the label describes dosing–which is one puff per meal, so I wonder if Type 2s, especially those with terrible blood sugars and no clue as to the relationship between carbs and blood sugar levels will be able to make this work.

Dosing is an issue, too, as the label and what people are reporting don’t match that well. The people posting most enthusiastically are very knowledgeable Type 1s. They have established that 8 u of Afrezza is nowhere near as powerful as 8 u of an injected insulin. We don’t know how linear the relationship is, since a typical Type 2 far past diagnosis might need 20-30 units of injected insulin to get even a mild lowering of blood sugar after a meal, and there aren’t people posting taking those kinds of doses. One of the highest profile “Type 2” tweeters is someone who by his own description posted on an investing board sounds more like someone with pre-diabetes than full fledged Type 2, and someone who, moreover, if he hadn’t demanded Afrezza would never have been put on any insulin at all, since he isn’t taking any other oral drug.

I have to say, the behavior of the investors who infest this product seems to have discouraged the other 3000-4000 people who have been prescribed it from speaking up and sharing their experiences. The trolling (which I have personally experienced) is very unpleasant and is making it much, much harder for those of us who would like to know more about this new insulin to learn what it can and can’t do.

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If you search the TUD site there is I believe a video Q&A with the T1 guy (sorry I can’t remember the name) who was trying out Afrezza and had a very positive experience with it. He’d also blogged on it. That encouraged me to ask my endo about it because I’m having some problems with exercise and severe hypos and thought a short acting bolus insulin that cleared faster would be a big help. She wasn’t too keen for a couple of reasons. One issue is that, while the lung retention rate is apparently not as bad as that for Exubera, it’s still something that occurs and raises concerns about lung cancer. For some people the therapeutic advantages may outweigh the risks but my control is pretty decent (32 years and no significant complications; A1C in the mid-6’s), so it didn’t seem worth the possible downsides. Whereas the guy in the aforementioned blog and Q&A was having a much rougher time keeping his T1 in balance.

The guy in the interview is the chief of those who have no online identity at all save as full time Afrezza advocate. What really stands out is that unlike others who post about diabetes, even his diabetes posts are only on one topic–Afrezza. No discussions on any other facet. Ever.

Of course sometimes people who never posted about anything anywhere can turn into vociferous online advocates of something if they’re touched by some extraordinary experience or outrage. I have my own hobbyhorses, as do we all, but yes, given how much else there is to discuss that kind of one-note behavior does seem rather odd.

Jenny,

Thanks for answering my question and frankly I wasn’t expecting such a long and detailed reply. From my reading, and irrespective of the investors who are either cheering for or against Afrezza, it seems to be an intriguing new medicine that works really well for some and not for others. This is probably no different than any medicine or insulin given variances in lifestyle, diet, stress, exercise, sleep, etc… We (my wife is a recently diagnosed T2) have decided to inquire at our next appointment and to ask for a sample. The good news is that if it doesn’t work as advertised we can revert to more traditional options. I’ll report back if we are successful. Thanks again.

In the past week or so, my fasting blood sugar has been decreasing. Several mornings below 80; today 61.
I wonder WHY I’m seeing such low numbers. And if I should be concerned about hypos.
I’m T2, on metformin & 10 units of Levemir at bedtime. Thoughts?

Deborah3,

Did you double check that 61 to be sure it wasn’t a wonky meter reading?

If you did and the reading was real, you might want to cut back on your Levemir because that reading is much too low and suggests you might be losing your hypo awareness. I lost hypo awareness a few years ago without realizing it and ended up in the 40s with no warning and found it very hard to raise my blood sugar back up. Very scary. That episode (actually there were 2 of them) was preceded by quite a few readings in the low 70s.

This drop could be caused by your becoming more insulin sensitive because your post meal numbers are lower. When our blood sugars are over 180-ish we develop a secondary insulin resistance that is due to the high glucose concentration. When we lower the glucose concentration we revert to our fundamental, genetic, insulin resistance (which doesn’t usually improve). So you might be more sensitive to insulin now and need less basal insulin.

Thanks for the reminder to recheck. Given that I’ve had a number of fasting BGL below 80, the 61 seems reasonable.If not desirable.
My doctor told me to reduce the Levemir by 20%. Hopefully I will find a sweet spot in terms of dosage.

Results in from my first A1C since starting insulin: 6.4. That’s down from 7.6. Certainly good news.
Still I’m surprised. Given my daily numbers, I expected that the result would be yet lower.
Though, in reality, my numbers were lowest when I started, but I was also running low in the mornings. With the decreased dosage, daily numbers in the past month (120-170) would be more like a 6.4.
Next up: keep eating healthy & see my endo next week.

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Congrats on your improvement!

When A1c disagrees with your meter, trust the meter. I’ve blogged about several different studies that show how unreliable A1c is for individuals. Its a convenience for docs, who don’t want to read thru logs, but a mediocre prediction for complications. Post meal spikes correlate far far better to complications. Sounds like you are dropping those spikes nicely.