Any type 1s taking INVOKANA?

Hi are there any T1s taking INVOKANA in addition to their insulin?

A diabetes educator I was working with a while back was a big advocate of the medicine. She had type 1 herself and saw good improvements in her blood sugars and insulin requirements. To my knowledge, INVOKANA is somewhat new and has only been "approved" for type 2's. Likely, this is due to the hypoglycemia risk factor, but I'm always cautious to try a new medication. I'll never say never, :) but I'm interested to know if there are many other type 1's using it. Let me know how it works for you if you decide to try it!

My endocrinologist recommended that I try INVOKANA. This office also participates in a lot of studies, and saw good study results with type 1s. I'm expecting my new Dexcom to arrive any day now; once I'm comfortable with it, I will start the INVOKANA. Told my endo that I did not want to start INVOKANA until I had the CGMS aka "big brother" watching out for me. He was good with that. I'll let you know how it goes!

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I tried INVOKANA a few months ago for a few days but stopped as I felt I was having too many lows. I just started back this week after my visit with my Endo who has me dialing back my levemir and my humalog. So far so good. I almost feel like it will NOT LET you go over 230ish. No matter what you eat or how much medicine you take. It has me asking, do I even need insulin? Could I just take this one pill everyday and no more insulin? I cant imagine that is the case but I have to tell you I like it so far. I'll update later with more findings as the days roll by.

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Invokana is an interesting drug. It is the first in it's class and apparently the way it works is that it lowers the renal threshold for glucose. Normally, your kidneys start to excrete glucose into your urine when you blood sugar reaches 160-180 mg/dl. But Invokana moves that curve, which means that you would presumably need less insulin to handle meals and you may even need less basal insulin. What I don't know is whether it will make control more difficult. For instance, if you use specific ratios for meals (ICR) on your pump, those may work ok for a low carb meal where you don't have much dumping of glucose, but a higher carb meal may have a lot of glucose dumping and the same ICR may give you a hypo. Does that make sense?

Although I am T2 on insulin, I've been considering Invokana. I have chronic fasting blood sugar problems and this drug may offer me some hope. I actually spend a bunch of time at AADE talking with their drug representatives about how it works and the research. It is claimed to be safe, with only some minor risks of UTIs. I don't really trust new drugs, they are approved without full information and can be harmful. So I like to wait until they have out there a while and safety data accumulates. And right now, the drug is considered by my insurance as branded so I would bear half the cost (about $140/month), so I'm going to wait.


Could any of you T1s that have an Endo that prescribed this to you please msg me his/her name/number? Mine is reluctant to prescribe it for me w/o some kinda of confirmation from another endo.


: ) Andrew

Andrew - I'll ask my Endo in a few weeks when I see him if he is OK with being a reference call. I think he will be cool with it. I'll let you know.

??? Wow never heard of Invokana?? Reading some of the discussion here makes me very curious. My current regimen is Humalog+Symlin+Levemir which has worked amazingly well but I will mention this to my Endo and see if she knows about it. I'm gonna do a little research also.

I just went on it today. Scrambler, any updates on how it has been going for you now after a month or so?

I am interested in hearing about type ones on it. Am currently on Victoza as a t1 and am getting good results - but think I should be up to date on some of these newer meds...

Update on my Invokana. Almost 2 months now and still like it but unlike my previous post on this thread, I have busted over 200 and even 300 on a few occassions. So, the drug doesn't keep you from going over 200 like i was hoping for. BUT it still is keeping things better between the lows and highs then without it. It was probably my fault as I was slow to give my fast acting (novalog pen) after some meals...and they were heavy carb meals like Mexican. A note on myself when I started was that I was on a pretty low carb and heavy Fat and Protein diet but let off that a bit over the holidays and that's when I had the higher then highs. I'm going to see my Endo today and will discuss more with him about the drug and circle back to update.

What's the point?.....

I'm interested in knowing why some Type 1's are looking at supplementing their insulin
with a oral drug? Are you looking for a lower A1c, weight loss, I guess I don't understand.
I'm not saying that it's easy for me to achieve good results with just insulin, but what would be a advantage one would like or expect from adding a oral supplement???

I could see a benefit if it eliminated Hypo risk, weight gain, or DK like a mixed regiment could when on pump therapy.

Hi John,

The post prandial rise is mostly the point. Now if you go to 160-170 post meal, you are having less of an impact on your red blood cells and the sugar they are carrying because it is being processed by the kidney and then into your urine. I have been on now for 11 days. Just increased from 100mg to 150mg today. My insulin requirements for carbs have gone from at some meals a 1-5, 1-7 to 1-10, and my bolus vs basal is now at 37% bolus, 63% basal where previous those were almost flip flopped. I can't speak for anyone else but for me if it wasn't for the darn food my a1c would be 5.0. Hoping that this will smooth things out further and make the screw ups, when they do happen and they will. less on the blood cells. I am also on Victoza. I am a T1 for 41 years & a pumper for the last 12 years. Let's go FDA on the Vibe already!!!!

Point for me was: 1. Lower A1C and 2. Less lows and highs.

Both have been achieved to some extent.

1. A1C dropped from 7.9 to 7.6 after 7 weeks
2. I feel like I have a lot less lows and highs

The fact that i'm in the high 7's might be a topic for another thread (?)

I'm hoping in about 2 months after I go in for another A1C and therefore been on Invokana for a full 3+ months I'll see the A1C go to low 7's

I dont have any A1c new numbers yet, but my average BG over the last week was 107 with a standard deviation of 39. Never had control this tight in my life. The drop in insulin has been insane. Prior to Invokana taking somewhere in the range of 50 units per day, now more like 32units or less.

I have but I developed insulin resistance. It works, you will pee like never before, and you need to stay hydrated which leads to more peeing but it has helped me to get control over the insulin resistance that I developed while working on my masters degree.

Update: A1C now 7.1 after another ~3-4 weeks.

I feel like at this rate i'll drop below 7 in next month visit...will be the first time in years and years. I hope, like others, there are major side effects come about as this is really helping. I'm thinking about adding metformin also in addition to this but will wait a few more months and see where my A1C levels off before making other changes.

I just saw my Endo today and she prescribed this instead of my Humalog (for now anyway). I will start on it tomorrow in addition to my usual Lantus. FYI endo is also a T1 and taking the drug- so that makes me feel more comfortable.

Her feed back was that while its not a lot of fun while you're acclimating...apparently you have to pee all the time and you may get an UTI because you're urine contains more sugar than usual- it balances out within a couple of weeks. On the plus side you may loose weight as you're loosing a couple hundred extra calories a day thru your urine. She reports good success with her patients and herself.

I'll check back in after I've been taking it for a couple of weeks and let you know.

Dr. Bernstein in his latest teleconference talked about his accumulating experience with the SGLT2 drugs and commented that he observed that they may take a couple weeks to achieve effectiveness and that some patients seems to experience some diminished effect over time.

Hello! I am a Type 1 for 26 years. I have been on samples of Invokana for almost 1 month now. I have had to gradually reduce my basil rate by 10 units per day so far and bolus MUCH less. I wear a Dexcom G4 and have not gone over 170 since this medicine started kicking in (about 2 weeks ago). I am having a lot of lows (2-3 per day under 60), however I am seeing such wonderful results I am committed to battling this with constant blood sugar supervision and gradual reductions on my basil and bolus rates.

I would NOT recommend taking this medicine if you are not on a CGMS all of the time. For myself, the results were pretty dramatic fairly quickly.

As far as side effects other than the hypos.... I am 5'5'' and weigh about 130 lbs and have also noticed some weight loss probably due to the decrease of insulin. It is also important to be very, very hygienic "downtown" due to the sugar in your urine and the added risk of UTI's. :) I have not had any problems there so far, but was warned by my endocrinologist.

I will try to update this post next month at this time to let you know if my sugars have leveled out. As of right now, my endocrinologist has offered me samples, so I will be investigating costs, etc. as well.

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